Personal Health
Information Privacy Act, 2000, Bill 159, Mrs
Witmer/
Loi de 2000 sur la confidentialité des renseignements
personnels
sur la santé, projet de loi 159, Mme
Witmer
Cardiac Care Network of
Ontario
Dr Chris Morgan
Mr Rob Forbes
College of Physicians
and Surgeons of Ontario
Ms Cathy Fooks
Dr Rocco Gerace
Dr John Bonn
Centre for Addiction
and Mental Health
Ms Jean Simpson
Ms Gail Czukar
Dr David Goldbloom
Dr Franco Vaccarino
Canadian Pensioners
Concerned
Ms Gerda Kaegi
IMS Health
Canada
Dr Roger Korman
Ms Anita Fineberg
ARCH
Ms Lana Kerzner
Police Association of
Ontario
Mr Bruce Miller
Ms Isobel Anderson
Ontario Dental
Hygienists' Association
Ms Pat Spencer
Association for
Healthcare Philanthropy Canada
Mr Michael Farrell
Ms Anne Randall
Ms Sally Dobbie
Ontario Psychological
Association
Dr Christian Keresztes
Canadian Association
of Chain Drug Stores
Ms Deb Saltmarche
Church of Christ,
Scientist
Mr Lyle Young
Mr John
Manuel
Dr Philip
Wyatt
Mental Health Legal
Committee
Ms Anita Szigeti
College of Dietitians
of Ontario
Ms Shirley Lee
Canadian Life and
Health Insurance Association
Mr Charlie Black
College of
Occupational Therapists of Ontario
Ms Jan Robinson
Ontario Federation of
Community Mental Health and Addiction Programs
Mr Chris Higgins
Ontario Association
of Medical Laboratories
Ms Virginia Turner
Ms Frances
Textor
Mr Mario
Paliska
Ontario Nurses'
Association
Ms Barb Wahl
Ontario Hospital
Association
Mr Frank Norman
Mr Murray MacKenzie
Mr David MacKinnon
Ms Deborah Tarshis
STANDING COMMITTEE ON
GENERAL GOVERNMENT
Chair /
Président
Mr Steve Gilchrist (Scarborough East / -Est PC)
Vice-Chair / Vice-Présidente
Mrs Julia Munro (York North / -Nord PC)
Mr Toby Barrett (Norfolk PC)
Mrs Marie Bountrogianni (Hamilton Mountain L)
Mr Ted Chudleigh (Halton PC)
Mr Garfield Dunlop (Simcoe North / -Nord PC)
Mr Steve Gilchrist (Scarborough East / -Est PC)
Mr Dave Levac (Brant L)
Mr Rosario Marchese (Trinity-Spadina ND)
Mrs Julia Munro (York North / -Nord PC)
Substitutions / Membres remplaçants
Mr Carl DeFaria (Mississauga East / -Est PC)
Mr Raminder Gill (Bramalea-Gore-Malton-Springdale PC)
Ms Frances Lankin (Beaches-East York ND)
Mr Bart Maves (Niagara Falls PC)
Mrs Lyn McLeod (Thunder Bay-Atikokan L)
Mrs Sandra Pupatello (Windsor West / -Ouest L)
Mr Bob Wood (London West / -Ouest PC)
Also taking part
Mr Phil Jackson, director,
strategic health policy branch, Ministry of Health and Long-Term
Care
Clerk / Greffière
Ms Anne Stokes
Staff /Personnel
Mr Andrew McNaught, research officer,
Research and Information Services
The committee met at
0905 in committee room 1.
PERSONAL HEALTH INFORMATION PRIVACY ACT, 2000 / LOI
DE 2000 SUR LA CONFIDENTIALITÉ DES RENSEIGNEMENTS PERSONNELS
SUR LA SANTÉ
Consideration of Bill 159, An
Act respecting personal health information and related matters /
Projet de loi 159, Loi concernant les renseignements personnels
sur la santé et traitant de questions connexes.
CARDIAC CARE NETWORK OF ONTARIO
The Chair (Mr Steve
Gilchrist): Good morning. I call the committee to order,
as we continue our hearings on Bill 159, An Act respecting
personal health information and related matters.
Our first presentation this
morning will be from the Cardiac Care Network of Ontario. I'd
invite them to come forward to the witness table. Good morning
and welcome to the committee.
Dr Chris
Morgan: My name is Dr Chris Morgan, and I am the
vice-chair of the Cardiac Care Network of Ontario. My colleagues
with me are Mr Rob Forbes, to my left, who is our director of
informatics, Mr Mark Vimr, who is our chief executive officer,
and Jill Ross, who is our director of projects and
operations.
I am a physician, but I am
here to discuss the specific issues of the status of persons or
agencies who hold disease-specific registries of health
information. I would also like to touch on the issue of patient
consent as it relates to the formation of these registries.
In about 10 minutes, I would
like to briefly review the history of the Cardiac Care Network,
how we use personal health information, what we perceive as the
implications of the legislation for the Cardiac Care Network and
perhaps suggest a recommendation for how the Cardiac Care Network
and perhaps other disease-specific registries may be dealt with
specifically under the legislation.
Very briefly, in the late
1980s you may remember there was a public perception of a crisis
in cardiac care, that patients were dying needlessly while
awaiting cardiac surgery. There was no objective way to assess
patient urgency, leading thus to unequal access to care. There
was an issue around appropriate resourcing of cardiac care, and
there was no formal system in place to assist either patients or
physicians in accessing care. The Ministry of Health at that time
did commission an investigation of cardiac surgery. It was
centred on a specific institution but in reality examined the
cardiac care system in the province. In its final report, it
recommended the formation of the Cardiac Care Network. The
mandate of the Cardiac Care Network, which was formed in July
1990 as an unincorporated body, was twofold: first, to provide
liaison and coordination of cardiac surgical patients throughout
the province; and the second important matter was to advise the
Ontario Ministry of Health on matters relating to cardiac
surgery.
To meet this mandate, as our
initial strategy we formed a standardized system for the triage
of cardiac patients in all of Ontario's cardiac centres. That
involved the development of an accurate, reliable database using
standardized terminologies. We also used that database not just
for patient care but for advising the ministry on system-related
issues. In each hospital providing advanced cardiac care, there
is a regional coordinator. Mostly, these are cardiac care nurses,
although they're not exclusively cardiac care nurses, and they
are the patient interface. They coordinate the collection of
clinical data, they facilitate communication between physicians
and patients and their families, they in some instances
facilitate referral between institutions and they work with
physicians and hospitals to monitor patients who are on the
waiting list. They also provide an important role as an
information source for patients and families. They are employees
of the cardiac centres. They use the data at the institutional
level as a management tool for patients.
In addition, the data which
is collected at an institutional level is downloaded to a central
registry at the Cardiac Care Network on a regular basis. This
database, which was initially for cardiac surgical patients but
has been extended beyond that, was implemented in 1991 and now
holds many thousands of patients. It was designed as a waiting
list management system, and every patient in the province who is
referred for a cardiac procedure is now registered. It calculates
an urgency scoring system and so on.
0910
While the data is currently
held in the hospitals and downloaded to a central registry, we
actually envision as part of
our information technology that the data will be entered directly
into the central registry, where it may be accessed by
individuals from the hospital. So an agency such as CCN will be
holding information with personal health information identifiers
included. We use the data for management of patient care, for
monitoring and evaluation of access, for research and planning,
for issues of funding and accountability and for communication
with many stakeholders.
Currently, our use of
personal health information is limited to the monitoring of
individuals who are on waiting lists so as to assist the
providers in delivering care in an appropriate time span. We do
disclose data to appropriate researchers-most importantly, the
Institute for Clinical Evaluative Sciences, or ICES-after
approval and review by our informatics committee. So we do have
internal processes for that. We do have anonymous and aggregated
data, which is used to monitor utilization and access on waiting
lists, and we provide population-based analyses to assist the
network in providing clinical and planning advice to the
ministry. Our data are credible. There is confidence in the data
because it's jointly monitored by a number of bodies. They are
objective in that they are subjected to independent data
analysis, and they've been used by many bodies, including the
CCN, the ministry, JPPC, district health councils, the
restructuring commission and so on. Our data has in fact received
national and international recognition as being a model for a
disease-specific registry.
We are expanding our data
management to include procedures such as pacemakers and to
include a new pilot project in cardiac rehabilitation. What is a
bit of a step forward is that in the cardiac rehabilitation it's
not just going to be a registry, but it's also going to be used
somewhat as a management and evaluation tool.
What do we perceive as the
implications of the legislation? In order to continue to advise
the minister and fulfill our mandate, we believe that we will
need to continue to collect personal health information. As a
person who maintains a registry of personal health information
that relates to a specific disease or condition, we consider
ourselves to satisfy the definition of a health information
custodian, and similarly, as an adviser to the minister as a
system monitor, we presumably would meet the criteria of a health
information custodian. We are supportive of the intent of the
legislation, and we are preparing to comply with the provisions
of the bill. We understand the need for strict rules and
procedures regarding the collection of the data, the protection
of the information, the necessity for consent where prescribed,
the use and disclosure of this information and the needs of
patients to access their own records.
However, there are a number
of issues. CCN is an unincorporated entity. To a degree, we do
not have standing as an independent entity. Our role is changing.
We're not just a registry any longer; we're beginning to take on
roles around the monitoring and provision of care. In our
opinion, in the legislation-the draft that we have seen-the
definition of a "registry" of information is not entirely clear.
I think it's also important to note that there are a growing
number of similar provincial networks. For instance, there is
Cancer Care Ontario, which is specifically named in the
legislation as a custodian of health information, but there is
also a joint replacement registry and so on. We would perhaps be
looking to recognize that all of these custodians would have
similar status.
So we are a little bit
unclear about our particular status in the future under the law.
We recommend to you, respectfully, that CCN and similar health
networks, as are deemed appropriate by the Legislature, should be
explicitly prescribed as health information custodians and that
we be encouraged in and permitted to continue with our role to
provide the tools to both providers and government promoting
equity and quality cardiac care at the level of the patient, the
provider and the system.
I'd just like to very briefly
touch on the issue of consent. I think we all appreciate the
importance of consent and informed consent, but it's important to
balance that off without raising an inappropriate barrier to the
collection of necessary information, our concern being that if
the consent requirements are too arduous then the ability to
collect comprehensive and complete data may be impaired.
Thank you for your attention.
We'd be happy to answer questions.
The Chair:
Thank you very much. That leaves us just under three minutes per
caucus.
Mrs Lyn McLeod
(Thunder Bay-Atikokan): I appreciate your concern with
paragraph 12 of subsection 2(1), "A person who maintains a
registry of personal health information that relates to a
specific disease...." It is a little vague, particularly the use
of the term "person." But is there not a danger if the
legislation becomes too specific in listing registries that it
becomes difficult to be inclusive of the development of
registries in the future?
Dr Morgan:
Yes, I think that's a good point and perhaps the issue here is to
make sure that current and future persons who hold these kinds of
disease-specific registries are recognized in the act without
perhaps naming each individual one.
Mrs McLeod:
I think that was probably the intent of paragraph 12.
Dr Morgan:
Yes.
Mrs McLeod:
On the issue of consent, and not being unduly burdened by the
necessity of consent to the point where you can't responsibly do
your own work, there is a proposed amendment from the provincial
privacy commissioner in which there would be a lockbox provision
that records could be used or could be disclosed for the purpose
of providing or assisting in providing health care to the
individual unless the individual has instructed the custodian not
to make the disclosure. I don't think that would unduly interfere
with the work that you have to do, as I understand it, because I
assume you get consent now anyway for people who come into the
network. If you're a health care custodian under paragraph 12,
you would be free to exchange information with people, given that
consent?
Dr Morgan: There are probably two
levels of consent we need to be concerned about here. One is the
consent at the institutional level for the active management of
that individual, and where practical today when patients enter
the registry they're informed that such a registry exists and how
it may be used. There's also a secondary level of consent. Does
the individual consent to the use of anonymous health information
for research and monitoring purposes?
I think our concern would be
that if the consent process becomes very arduous and a
significant number of individuals fail to consent to the use of
information then the whole comprehensive nature of our data
collection is lost.
Mrs McLeod:
But with that lockbox it doesn't affect anonymous information, as
I understand it.
Dr Morgan:
It should not. I think that would be important to us.
Ms Frances Lankin
(Beaches-East York): Could you give us a little more
detail on what consent is sought now for someone to be entered
into the registry? You said "where practical."
Dr Morgan:
As you may recognize, there are a number of patients who enter
the advanced cardiac care system under urgent or emergent
circumstances. In a middle-of-the-night episode of care, the
individuals who collect the data may not even be around at that
time, so the data may be entered the next day or whatever, and it
may not be practical to obtain consent under those circumstances.
An individual walking in for a scheduled visit will be entered in
the registry. They are informed of the nature of the registry and
so on at that particular point. So under those circumstances
specific consent is obtained, although it's not signed consent.
But you can understand there will be circumstances where the
urgency of a situation will not allow the consent process to take
place.
Ms Lankin: I
think all of us recognize the phenomenal success of the Cardiac
Care Network and want to ensure that kind of co-ordination of
service is there. I'm sure all the cardiac care patients in the
province want it to remain successful, as well. I think we're
trying to find, as you said, the balance that needs to be
struck.
0920
You mentioned that you do
research yourself: aggregate epidemiological numbers are
produced; those are anonymized. You also mentioned that you
shared information with ICES. Is any of the information shared
with outside research organizations, like ICES, with patient
identifiers?
Dr Morgan:
Can I just turn to one of my colleagues? Rob.
Mr Rob
Forbes: Currently we do provide ICES with personal
health information which they in turn pseudonymize using their
particular method for pseudonymizing records so that none of the
people doing the research could identify the patient
corresponding to their record. But CCN does provide personal
health information to ICES. We have not, to this point, provided
personal health information to any other researchers.
Ms Lankin:
And that was, as you said, after approval of your committee.
Presumably there's an agreement in place with how they will treat
the information when they receive it?
Mr Forbes:
Yes.
Ms Lankin:
Why is it, though, that you provide it with personal identifiers
instead of anonymizing the information yourself first before you
send it over?
Dr Morgan:
One, we do have a specific agreement with ICES, with a specific
contract. Two, ICES has, I believe, special dispensation.
Ms Lankin:
Yes, I realize that. I'm just-
Dr Morgan:
The third thing is they do extensive matching of records using
other data sources such as CIHI and so on. Some of the
information, address codes and things like that, are necessary
for their matching.
Ms Lankin:
Is there a particular aspect of the research that involves this
data that requires matching? I'm trying to get some case examples
before the committee so we can understand the important research
that's being done that requires personal identifiers.
Dr Morgan: I
think a couple of specific things: as you know, we produce an
annual cardiac surgical report card on outcomes of cardiac
surgery which is hospital-specific. We've also been trying to
look very carefully at small area variations in disease
throughout the province and I think that was highlighted in the
last ICES atlas on cardiac disease. I think those are examples of
why some of that information is necessary.
Mr Bob Wood (London
West): I'd like to make sure I correctly understand the
consent procedure you have now. If I have a cardiac event that
makes me a candidate for entry into the network, you get my
consent to go into the network; is that correct?
Dr Morgan:
At the present time, we would obtain your verbal consent. We
would explain the nature of the database and the fact that you
would be entered onto it. That's if you walk in. If you come in
an emergency or crisis situation, that opportunity may not be
there, but you will be entered into the database.
Mr Wood:
After that, do you ask for any other consent for research
purposes?
Dr Morgan:
Not at the present time.
Mr Wood:
What ethics review is there of the research that is done with
your data?
Dr Morgan:
ICES has their own internal mechanisms for that. Our informatics
committee, which is responsible for data management, approves any
research requests, and that's a multidisciplinary body. There is
no specific research intervention or manoeuvre here, as one might
do in a trial of a therapy. So we do not subject this to an
external ethics review.
Mr Wood:
Would you have a problem if the legislation were to mandate doing
that? Would that create a problem? Obviously it would be more
work, but would that create an operational problem for you?
Dr Morgan: I wouldn't say that I
would have a specific problem with that. Again, how high does it
raise the barrier?
Mr Wood:
Would you have a problem if the Information and Privacy
Commissioner would have the ultimate signoff?
Dr Morgan:
No, I wouldn't have a problem with that.
Mr Wood: The
last question is this. You've expressed some concerns which I
understand. Do you have specific changes that you'd like to see
to the legislation as drafted?
Dr Morgan:
No. I think we came here today just to raise some concerns rather
than make a specific recommendation.
The Chair:
Thank you for taking the time to come before us here this
morning.
Dr Morgan:
Thank you very much for hearing us.
COLLEGE OF PHYSICIANS AND SURGEONS OR ONTARIO
The Chair:
Our next presentation will be from the College of Physicians and
Surgeons of Ontario. Good morning and welcome to the
committee.
Ms Cathy
Fooks: Good morning. My name is Cathy Fooks. I am the
director of policy at the college. With me this morning is Dr
Rocco Gerace, who is the president of the college and is an
emergency physician from London, Ontario. To his right is Dr John
Bonn, who is the registrar and a family physician and lawyer from
Trenton. Dr Gerace will take us through the presentation, which I
believe is just being disseminated now. It's in the package that
you'll get. It probably won't come as a surprise to you, what
we're going to say. Then we've reserved, we hope, about 10
minutes for questions.
Dr Rocco
Gerace: We appreciate the opportunity to address you
this morning, as the confidentiality of personal health
information is an issue of great importance for us. I realize
you've already heard from a number of colleges and the Federation
of Regulated Health Professions and I do not want to repeat what
those organizations have told you. We agree with the analysis and
recommendations you have received thus far from them.
I have three objectives this
morning: firstly, to describe for you how the CPSO currently uses
personal health information and the safeguards we have in place
to protect privacy and confidentiality; secondly, to add a few
more examples to the ones you have already been given about Bill
159 and its incompatibility with our regulatory requirements
under the Regulated Health Professions Act, or RHPA; and finally,
to propose a different route to deal with the need for a
legislative framework for colleges. We would be pleased to answer
questions that you may have at the end of our presentation.
The college's job is to
regulate the practice of medicine in Ontario. We are given this
responsibility under the RHPA and in carrying out these
responsibilities we are granted the authority to collect and use
personal health information. Medical records are our window into
the medical practice of physicians in this province. Sometimes we
use this information without the knowledge or consent of a
patient. I'll come back to this point further in the
presentation, as I realize it may cause some concern.
On the basis of reviewing
medical records, the college has the authority to carry out a
number of dispositions. It can order educational assessments and
upgrading of a physician. It can restrict the clinical activities
of a physician; for example, prohibiting prescribing of certain
medications. It can suspend a physician from practice until terms
and conditions are met. Ultimately it can revoke an individual's
licence to practise.
This use of records is
clearly not for the provision of direct patient care, but
undertaken for a secondary and related purpose. The federal
Privacy Commissioner said to you, "The principles of fair
information practices require that personal information cannot be
put to a second use, related or otherwise, without the consent of
the person from whom the information was collected." We must
respectfully disagree. In our view, there are other competing
public interest principles that need to be balanced against fair
information practices. Our role is directed at protecting the
public from harm and improving the quality of medical care in
this province. These public interest principles need to be
balanced against privacy rights.
Let me describe briefly how
we use personal health information and the safeguards we put in
place to protect it. Section 36 of the RHPA provides for complete
confidentiality of all the information we receive. I will quote
the words in the act: "shall preserve secrecy with respect to all
information that comes to his or her knowledge in the course of
his or her duties and shall not communicate any information to
any other person." This provision applies to council and
committee members, employees and anyone we may use as experts or
inspectors. There are a few exceptions; for example, we can
convey information about physicians to other medical regulators,
but this would not include identifiable patient information.
There are three key statutory
processes under the RHPA that are dependent upon patient records.
They are investigating patient complaints, registrar's
investigations and quality assurance assessments. I have
summarized these for you in appendix A, and I will go through
them one by one.
First, investigating patient
complaints: the public complaints begin with someone bringing a
complaint about a physician to the college. We deal with
approximately 1,400 complaints a year that go to the complaints
committee. If we require medical records from a physician or a
hospital, the patient or the patient's legal representative signs
a consent form giving us access to those materials. A copy of
that form is appended to this submission for your information.
The complaints committee reviews that material and makes a
decision about further action against the physician. If the case
proceeds to the discipline committee, the hearings are required
by law to be open to the
public. The complainant usually testifies. However, we have the
ability to close portions of the hearing and we have the ability
to order a publication ban. This means that news media may not
identify individuals and the names are not used in the written
decisions of the discipline committee.
0930
The second general area is
registrar's investigations. Under section 75 of the RHPA we may
investigate a physician if there are reasonable and probable
grounds to believe that an act of misconduct has been committed.
This type of investigation is usually triggered by information
from a coroner, a hospital chief of staff or a concerned
professional. We investigate approximately 50 of these types of
cases annually. In these situations the notions of knowledge and
consent don't hold. We can't ask permission in advance from a
patient. The RHPA does provide us with the authority to enter
premises and to "examine anything found there that is relevant to
the investigation." This must remain paramount. In these
investigations we have an expert review the care provided and it
is the expert we use to testify at the hearing. Patient
identifiers are removed.
Quality assurance
assessments: the importance of regular review and audit for the
improvement of delivery of health care is well established. In
fact, Bill 159 recognizes this activity in hospitals. Again, we
rely on records to assess the quality of care provided and we
can't ask permission in assessing those records. Quality
assurance decisions are not public documents under the RHPA, and
all information received during that process is specifically
protected from any other use.
Speaking generally then,
does Ontario need legislation in this area? I think the answer to
that is yes. The College of Physicians and Surgeons supports the
need for comprehensive legislation to govern the collection, use
and disclosure of personal health information. Should colleges be
covered in a legislative framework? Absolutely. Should colleges
be designated as health care custodians under Bill 159? The
answer is no.
You have already heard a
number of examples from other colleges and the federation of
areas where Bill 159 would need amending so as not to impede the
regulatory process. Let me add a few more. Section 21(7) of Bill
159 allows for an individual to revoke their consent to the
collection, use or disclosure of personal health information.
This may leave the impression that if someone brings a complaint
to the college and then some time in the future revokes the
consent for the use of the information, the college must stop its
investigation or proceeding. The courts, however, ruled
otherwise. They have said that the college must continue, once
made aware of a potentially harmful situation. I quote Justice
Rosenberg of the Ontario Divisional Court. He says, "It is
important that the complaints committee understand that once the
complaint is made the complainant should no longer have control
of the proceedings and that the investigation must continue into
the complaint"-and I emphasize-"whether or not the complainant
asks that it be halted." This does not imply that we would compel
a patient to testify but it does mean we must continue with our
investigation.
Section 33 allows for the
disclosure of information for the purpose of eliminating or
reducing a risk to an individual's safety. In 1998, the college
passed a policy that allowed a warning to be given on the basis
of a risk of serious harm to an individual or group of
individuals. This policy included specific criteria that had to
be met in order for the duty to warn to be permitted. These words
were chosen carefully based on existing case law. Unfortunately,
Bill 159 has narrowed the college's existing policy in this
regard.
Section 40 provides strong
protective wording for quality-of-care activities that are
conducted in a hospital or by another prescribed facility,
organization or person that provides health care. Unfortunately,
colleges are left out of section 40. Why would quality assurance
or quality improvement activities within institutions be included
but not the same activities undertaken by the regulatory body
looking at physicians across the province?
Finally, like others who
have appeared before you, the CPSO also has general concerns with
the broad regulation-making authority given to the minister in
this act. It would potentially permit the minister to change some
of the fundamental concepts of this legislation through
regulation in over 30 different areas.
So where do we put the
colleges? I don't want our concerns with Bill 159 to be viewed as
resistance, nor are we proposing exempting colleges from new
obligations in this area. It is time to legislate information and
privacy practices for colleges. When the RHPA was drafted, the
focus was on secrecy and confidentiality. The RHPA is very clear
about how we protect the confidentiality of the information we
receive. However, there is not explicit consideration of privacy;
that is, how we collect and use the information internally. The
concepts in Bill 159 provide an opportunity to spell out in law
best practices in this regard.
The CPSO believes that
codifying clear principles for the collection, use and disclosure
of personal health information in a regulatory environment is a
must. Our preference would be to include a new section in the
RHPA specific to the purposes of colleges. It is the RHPA that
spells out our processes. It is the RHPA that currently gives us
the authority to view records. It should be the RHPA that spells
out our information practices as well.
You have asked for a list
of specific sections in Bill 159 that are incompatible with the
RHPA. We will work with the other colleges to prepare that for
you.
Having said that, we still
recommend that rather than attempting to amend numerous sections
of Bill 159 to fit a regulatory process, we can incorporate many
of the principles of Bill 159 into the RHPA. For example, part
IV, describing security, safeguards, the need for written
policies etc, could be built into the RHPA. Furthermore, we would
like the wording of section 40 to cover the quality assurance
programs of the college. The wording in section 40 is better than the wording we
currently have in the RHPA.
There is the possibility
that the RHPA will be opened later this year based on a separate
review by the Health Professions Regulatory Advisory Council, or
HPRAC. As one of the consistent recommendations to HPRAC was to
change the ability of colleges to provide more public information
about investigations and assessments, privacy protections will be
essential. However, if that is not a viable option and we are to
be a part of Bill 159, we are prepared to work to ensure that
current provisions do not compromise our ability to regulate the
practice of medicine effectively.
As I close, I want to
re-emphasize that health information is so important that we need
to get this legislation right. Being denied your right to privacy
is a terrible thing, but being the recipient of really bad or
unethical care is a terrible thing as well. Physicians
specifically, and the college in general, have always held
patient confidentiality sacred. Notwithstanding that, we ask that
colleges continue to have free access to information with
explicit limits on its use through confidentiality provisions and
privacy protocols. We are legislatively mandated to be the
watchdog of the practice of medicine. We must not be compromised
in this role.
We would be pleased to
answer questions.
The Chair:
Thank you very much. That leaves us about two minutes per caucus.
We'll start this time with Ms Lankin.
Ms Lankin:
I have no questions, just a general comment. I appreciate the
presentation; it's very clear. I appreciate Ms Fooks's attendance
here the last couple of days. I think that's reflected in the
presentation, so that's really helpful. I'm sure she has shared
with you that the ministry has presented to us that it certainly
is not their intent that there be a conflict or that anything
within this act undermine the regulatory role of the colleges-I'm
sure it's not the committee's intent either-and that we have
asked for HPRAC to take a look a this.
I think your suggestion of
working with the other colleges and the ministry and HPRAC is an
excellent one. I would like to recommend that someone take the
initiative, go ahead and get a meeting set up and get started on
that because it would be beneficial for this committee to see a
consensus approach come back from those three parties, as opposed
to our trying to sort through it and figure out what the
amendments should be.
Thank you again for your
presentation.
Mr Wood:
You have the power to compel production of documents, do you not?
You can issue a subpoena for documents?
Dr Gerace:
Ultimately, yes.
Mr Wood:
Whom do you get the subpoena from?
Dr John
Bonn: The authority is in the RHPA itself.
Mr Wood:
Who actually issues the subpoena is what I wondered.
Dr Bonn:
It goes out over my signature as registrar. I am empowered, with
reasonable and probable grounds, to conduct a section 75
investigation. That gives our inspectors the powers of search and
seizure of records. That goes out over the registrar's
signature.
Mr Wood:
One thing we could do is say, "OK, you continue to have that
power but we're going to give it, say, to a court." So if you
want to have access without consent to a patient's records,
you've got to get, in effect, a third party to authorize you to
do that. If we did that, just for the sake of discussion, would
that create an operational difficulty for you?
0940
Dr Bonn:
Extreme operational difficulty.
Mr Wood:
Why is that?
Dr Bonn:
Timing. Many times I will get a notice and have to act
expeditiously in order to protect the public. We're talking
about-
Mr Wood:
How do you differ from the police, for example, in that
regard?
Dr Bonn: I
really don't have the information as to how the police will get a
warrant on a quick notice.
Mr Wood:
They can get them 24 hours a day.
Dr Bonn: I
don't know if our college would have that ability, because we
don't work daily with the judicial system like the police do. If
you're talking about going before a justice of the peace or a
judge of the court in order to get authority to investigate, I
foresee all sorts of difficulties for colleges attempting to do
one thing: protect the public. Our motivation is not to seek out
information for any purpose other than to protect the public.
Mr Wood:
Do you think you're different from the police?
Dr Bonn:
No, sir, I do not. I think the field that we are working in is
entirely different.
Mr Wood:
Why? They do the same thing.
Dr Bonn:
The milieu that we work in, hospitals and physicians' offices-my
understanding is this is why colleges had been given this
authority, because of their expertise and knowledge of the
system. We have a unique expertise in health care as providers.
I'm talking about the profession. The college has been given the
responsibility of ensuring that the care provided is that which
the public expects and which they are due. So we use that in a
manner that is designed to expedite any concerns that there are
about care.
As you know from previous
submissions to this Legislature, we are constrained by the
legislation as it is. To add another layer of authority that is
required so we can do our job, I wonder whether we would continue
to have concerns expressed in this Legislature and in the media
about the time it takes us to do our job. That's my only
concern.
Mr Wood: I
would invite you to take a look at how the police deal with
compelling production of documents and tell me how your work
differs. I realize you haven't studied that in detail now, but
that would be helpful, at least to me and perhaps to other people
who are taking a look at this legislation.
Mrs
McLeod: Although we haven't moved into the official
amendment process yet, I think there is a growing realization, as Frances Lankin
has indicated, that we need to look at changes to the way in
which Bill 159 is drafted to deal with the colleges if we give
primacy to privacy legislation over other acts, which some of us
believe we should, to specifically exclude the RHPA from the
provisions. But you've raised a number of issues today that then
need to be addressed that the other colleges, by and large,
haven't brought forward.
I concur with Ms Lankin's
suggestion, Mr Chair, that we ask the RHPA review to start to
look at some of these issues, because I understand it's in its
next-to-final stages in terms of the preparation of their
report.
I did want to ask about the
issue of registrar's investigations. You've indicated that
patient identifiers are removed in testimony in those
investigations. Is it required by law that the patient
identifiers be removed or is that a practice of the college?
Dr Bonn:
It's a practice of the college.
Mrs
McLeod: Is that something that should be specified in
law in terms of the privacy rights of individuals?
Dr Bonn: I
see no downside except for the logistics of removing all patient
identifiers in documentation that is presented to our committees.
Our committees will literally get bankers' boxes of materials
relating to patient files, especially if there is hospital care
involved. The actual logistics of removing patient identifiers
would be quite overwhelming, to put it mildly.
Mrs
McLeod: So it would just be in the testimony.
Dr Bonn:
Yes.
Mrs
McLeod: Is there a requirement on the college, through
the RHPA, to notify patients who are involved in the
investigation, who are affected by your investigation of a
fraud?
Dr Gerace:
There is not.
Mrs
McLeod: If misconduct involves mistreatment in some way,
then the patient surely has a right to know that. We've been
dealing with issues of non-correction of inaccurate health
records, for one thing, but there could also be treatment
implications for patients who have not been properly handled.
Where does the obligation of the college back to the patient come
in this kind of investigation?
Ms Fooks:
That's exactly the point. Currently we are not required to do it.
Our point to you is, there are a whole series of issues that were
not considered in 1993, because by that stage people were sick to
death of the RHPA, after 12 years of study, that have really come
to light now that we've worked with this legislation.
This is a personal opinion
now, not a college position, but I personally think that nobody
considered the privacy issues. They just assumed that as soon as
information came to the college we would use it and keep it
confidential, which we do. But we're in a new era, so I
personally think that colleges need to be required to go back,
whether it's 159 or RHPA. We'd prefer RHPA for simplistic
reasons.
Mrs
McLeod: So you would put that as a privacy issue?
Ms Fooks:
Yes.
The Chair:
Thank you for coming before us this morning.
CENTRE FOR ADDICTION AND MENTAL HEALTH
The Chair:
Our next presentation will be from the Centre for Addiction and
Mental Health. Good morning and welcome to the committee.
Ms Jean
Simpson: Good morning. I'm Jean Simpson. I'm the
executive vice-president and chief operating officer at the
Centre for Addiction and Mental Health. With me today to make the
presentation and to answer your questions are Dr David Goldbloom,
our physician-in-chief, Dr Franco Vaccarino, our VP of research,
and Gail Czukar, our general counsel.
The Centre for Addiction
and Mental Health was created in 1998, a successful merger of the
Addiction Research Foundation, the Clarke Institute of
Psychiatry, the Donwood Institute and the Queen Street Mental
Health Centre. The centre is a teaching hospital fully affiliated
with the University of Toronto. It has been recognized by the
World Health Organization as a centre of excellence, one of four
in the world. It is also the largest mental health and addiction
facility in Canada.
The centre brings together
internationally recognized, biological, clinical and social
researchers, a pre-eminent treatment facility, a broad range of
professional training, as well as a province-wide network of
community program staff. As a result, we have a unique capacity
to focus our research on the most pressing needs and also to take
the research result and translate it into knowledge and action.
The centre is also working on addressing the issue and the
elimination of the stigma that's associated with mental illness
and people suffering from addiction problems.
We really appreciate the
opportunity to be here. I'm here because at the centre we
recognize that health information is a very important issue. We
staunchly defend confidentiality. We also recognize the need for
health information for good clinical practice, for research, for
system planning, as well as for accountability.
Before I turn it over to my
colleagues, I would just like to mention that we are presenting
our draft submission. We have not had the opportunity to take
this for approval to our board of trustees. We anticipate doing
this over the next two weeks and we will then submit an approved
document for your use.
Gail Czukar will give you
an overview of the centre's issues. Dr David Goldbloom and Dr
Franco Vaccarino will address the clinical issues and the
research issues respectively.
Ms Gail
Czukar: In general, the centre supports the need for
legislation to govern information in the health system. We want
information to be used to improve the understanding of mental
health and addiction problems and to alleviate those problems.
However, we believe that use must be balanced with patient
confidentiality, and we
don't think Bill 159 in its current form achieves that balance
successfully.
Patient confidentiality is
not only an essential precondition to successful treatment, which
I think you've heard from others before you, it's an issue of
basic human dignity and respect. People with mental health and
addiction histories are stigmatized and their lives can be
impaired forever by an episode of mental health or addiction
treatment. They fear that increased access to information about
their status will add to the stigma and discrimination already
suffered by mental health consumer survivors. They fear that
symptoms of legitimate physical problems that require urgent
treatment can be misinterpreted in light of a psychiatric
treatment history that might be available in a general hospital
record, for example, and the results of that can be very serious
for them.
I think the telling
statement we heard from the consumer survivors we consulted is
that this legislation could change the very meaning of
confidentiality and cause people with mental health and addiction
problems to withhold critical information in circumstances that
are often life-threatening, because that's when they're seeking
help.
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Even if treatment is
successful, the effects of stigma can be very far-reaching. One
of our former patients, when well and gainfully employed, sought
a loan. When the bank's loan officer, who was very friendly and
positively disposed, started to enter information into the bank's
computer system, the person sitting across the desk could see a
huge sign come up on the computer that said "psychiatrically
challenged." So the loan officer changed their tune and said,
"We're very sorry, but we can't give you a loan," and ushered the
person out of the bank. That person thinks that information was
obtained by Equifax, probably illegally, and distributed to
credit institutions. Needless to say, that consumer survivor is
not very enthusiastic about the idea of legally sanctioned
broader sharing of that information.
We've provided a bit of
context in terms of the rules that we now operate under. The
mental health system, of course, has had rules in the Mental
Health Act for some time that we have found we can work with.
There are a few problems with that which are outlined here, but
I'd prefer to spend the time on our response to this legislation.
As I've said, we agree with the principle of a common set of
rules. I'm going to tell you a little bit about the parts of the
legislation that we feel are very positive and need to be kept.
Dr Goldbloom is going to tell you about our issues with respect
to sharing information in the care context, Dr Vaccarino is going
to talk about the research context and then I will address a few
specific issues.
The patient's
right-of-access provisions in this legislation are very
important. Of course, we have these under the Mental Health Act
now. I remember that in 1978, I believe-I can't remember if it
was 1978 or 1986 when these went in-there was much machination
about whether psychiatric patients should have access to their
records. It was a hard-fought battle. That has existed for some
time and the sky hasn't fallen in. So we feel if it can happen in
the mental health system, it can happen all over the system.
Substitute decision-making
is key for our clients. We need to have provisions that deal with
substitute decision-making for information. We also like the
quality assurance provisions. We also want to ensure-and I think
it's done in this definition-that personal health information
includes information about addiction clients. That's extremely
important.
We do have some
difficulties, and I'm going to let Dr Goldbloom address the first
of those.
Dr David
Goldbloom: The last time I appeared before a number of
people on this committee in this room was around the subject of
Bill 68, a subject which was divisive within the mental health
community and within the patient community. I feel today it's a
very different situation. This is far less divisive between care
providers and recipients of care in terms of the perspective I
want to outline to you around the protection of confidentiality
and privacy in this legislation. I speak to you not only as
someone who serves on the administration of the Centre for
Addiction and Mental Health, but also as a physician who directly
provides care to people with mental illness or addictions, and
people whose expectations around the privacy and confidentiality
of the information they share with me, their personal
information, I feel very strongly obliged to defend.
As Gail indicated to you,
we have long enjoyed within the mental health system a level of
protection of privacy and confidentiality that has been several
notches above that enjoyed by general health care facilities.
Indeed, at a previous hospital where I worked, the psychiatric
files within that general hospital were always stored separately
from the general health files because of concerns of more casual
approaches to issues of confidentiality. I am very pleased by the
aspects of this legislation which elevate privacy and
confidentiality of general health information to the level
enjoyed around mental health information. I think that's a
significant improvement.
I also think there should
not be two standards of privacy for health information. There are
many aspects around physical health information-one can only
think of things like HIV status, for instance-that should enjoy
every protection and privacy that mental health information or
addictions information enjoy.
We strongly support the
protection of this information and we are all too familiar with
the stigma associated with disclosure. Our approach to stigma is
not simply about protecting privacy but obviously promoting
public knowledge and understanding of illness as a way of
reducing stigma.
We also recognize this
legislation is an attempt to balance protection of privacy with
disclosure and sharing of information. We understand that
balance. That is not new with this legislation, as you heard in
the previous presentation, the provisions through the College of
Physicians and Surgeons
around duty to warn. We have provisions through things like form
14 for the release of confidential psychiatric information,
mechanisms that safeguard the privacy of information without
absolutely prohibiting its disclosure. I can tell you that there
are critical clinical situations which I've encountered
personally as a physician where there are other means, such as
the administrator-to-administrator release of confidential
information, that allow us to share between distinct psychiatric
facilities essential information that is necessary for the
continuity of care of our patients. However, we feel that the
balance has shifted too far in this legislation around access,
and access for purposes other than the provision of clinical
care.
Confidentiality is
fundamental to our provision of clinical care. It relates to the
quality of the relationship that people enter into, their
expectations, and the reality that people will withhold vital
information for their understanding and for their treatment if
they have concerns that confidentiality is not going to be
respected. Further, with third party access, an additional
concern is that once it is out there, much like an e-mail in
cyberspace, the controls over where that information subsequently
goes are even less protected than the access and disclosure
provisions that are here.
One of our strategic
directions as a health centre is in the provision of
client-centred care. We respect in that context the fact that
this is the information of our patients. They own this
information. This is ultimately about them, and that means they
have every right to be involved in determining how it's going to
be released, when it's going to be released; it means getting
their permission; it means getting access to their own
information. We welcome this addition because it's something, as
Gail already indicated to you, that has been a very positive
experience in general in mental health care. It is
extraordinarily rare that we would ever deny somebody their right
to access their own clinical record in mental health, and we have
to actually go to a review board hearing if we want to deny that
access. Not only that, people have the right to request
amendments under the Mental Health Act to their health record.
That is also an important provision so that they feel they can
set the record straight around the story of their own health
care.
I am going to hand back to
Gail Czukar more detailed discussions around sections 33 and 36.
I don't know if you want to do that now or after Franco.
Ms Czukar:
Why don't I just mention it now in the context of this
discussion, because we think this is where it comes up. Of
course, we're concerned about the lengthy list of disclosures in
sections 29 to 37 and we think they're problematic; in particular
section 33, the disclosure to reduce or eliminate risk. We think
that the duty to warn should be more specifically targeted and
kept closer to what the current common law is with respect to
warning about threats that are related to a particular patient or
client of the custodian against a specific individual or group of
identifiable individuals. We often have third party information
that clients may relate to us or family members may relate to us.
We have no way of verifying that information, and for the
practitioners to be under a duty to do something with that
information would be problematic.
I know that you heard a
presentation on this yesterday and we'd be prepared to answer
further questions about it, but we want not just certainty but
protection for those practitioners to know what they're supposed
to do. Although it's a discretionary disclosure, I think that
over time it will only take one incident, where something goes
wrong and it comes to light that we had information that was not
disclosed, for the risk management analysis to be, "Well, you
should be calling the cops every time you have information like
this," and then we have a problem.
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With respect to 33(b), as
care of people increasingly takes place in the community, there's
a need for community service providers and others to have
information about risky behaviour of clients so that they can
develop the right kind of risk management plan. We would like to
see them be able to have that.
Finally, with respect to
36(1)(g), this section is way too broad and should be deleted. We
think that clause (h) is sufficient for disclosure of information
for investigation purposes. I'll leave it at that and let Franco
speak to the research issue.
Dr Franco
Vaccarino: Thank you for this opportunity to speak to
this act. I'd like to say a few words regarding the implications
of this act in the context of research. I also speak to you
wearing two hats, both as a senior administrator at the Centre
for Addiction and Mental Health and as an active researcher and
scientist myself.
The centre supports the
protection of personal health information collected for research
purposes, but we believe that this information should not be
subject to disclosure to authorities or others for purposes that
are unrelated to research except solely in the discretion of the
researcher in order to prevent harm to the persons or others.
The quality of health care
research is entirely dependent on the willingness of people,
including patients, to participate and be truthful in their
responses. Allowing research information to be disclosed to third
parties will have the effect of not inspiring trust and
confidence in people who generously donate their time and
information in really an altruistic sense toward the cause of
curing disease or improving health care.
An important point and
concern for us is also that allowing disclosure to third parties
would have the perhaps unanticipated side effect, but it
certainly would have this side effect, of decreasing people's
willingness to participate in research studies. The concern here
is that the very act of that happening would compromise the
quality and validity of whatever research information is obtained
as a result of that deficit.
The provisions in sections
27 and 32 regarding use and disclosure of previously recorded
information for research purposes are useful safeguards, and the
role of the research
ethics review bodies has been addressed in other presentations
and the CAMH supports this. I won't dwell on these points, but
let me just underline the key role of the research ethics boards
in this regard. The research ethics boards are key to maintaining
the ethical integrity of our research and research programs, and
issues relating to consent and confidentiality are reviewed by
our research ethics boards. No research protocol or project gets
done at our centre without the careful scrutiny and review of the
research ethics boards, comprising not only bioethicists and
medical ethicists but also active researchers and scientists. I'd
like to just stress the importance of the research ethics boards
in that context. At the end of the day, really, the ethical
integrity of the research is the bedrock for our research
programs. Any question regarding the ethical integrity of the
research would not allow that research to go forward.
A final point that I'll
make is that research information-we also have to be careful
here-used for purposes other than research is something we need
to keep our eye on and be careful about. The reason is that there
is limited and possibly even misleading utility in the use of
research information for purposes other than research. Research
information is information in development. It has limited, if
any, utility in a broader health context prior to it being fully
fleshed out. So that information outside of the context of
research purposes and in the context of the centre, in my mind,
would have limited, if any, utility in the broader context. I'll
stop there.
Ms Czukar:
That brings us to the final point with respect to-
The Chair:
I'm going to have to ask you to make your final point in about 30
seconds.
Ms Czukar:
I'm sorry, we haven't left time for questions. In that respect,
we have differing views on the mandatory disclosure provisions,
and we've suggested an alternative approach in our paper; that
is, independent review. We also would like to see the oversight
and enforcement provisions substantially increased. We think that
is the ultimate safeguard of confidentiality, and the provisions
that are there are not strong enough.
The Chair:
Thank you very much for your detailed presentation before us here
this morning.
CANADIAN PENSIONERS CONCERNED
The Chair:
Our next presentation will be from Canadian Pensioners Concerned.
Good morning and welcome to the committee.
Ms Gerda
Kaegi: Thank you for giving us the opportunity to appear
before you today. Canadian Pensioners Concerned, founded in 1969,
is a membership-based, non-partisan advocacy organization of
mature Canadians committed to preserving and enhancing a
human-centred vision of life for all citizens of all ages.
What I'd like to do is draw
attention to some of the key points that we have made in our
submission. You will have the detailed one in front of you.
There is a need for
legislation to regulate the right to privacy for individuals. A
critical issue, in light of the information that has become
public over the violation of that privacy over a number of years,
and let me just take this year in particular: the case of the OPP
officer disclosing personal health information to a citizen in
Walkerton recently, information she had not received from her
physician; the story about a Dr Sears who had set up business to
provide personal health information pertaining to potential
employees of corporations such as the TTC and Canadian Tire. He
is purported to have said that he can get it one way or another.
That is unacceptable, in our view. That was in a story in the
Toronto Star of January 8 of this year.
We then have concerns about
the use of the term "retirement home" in subparagraph (vi),
paragraph 4 of clause 2(1)(d). As an organization, we have made
many deputations, many submissions to government for the last 10
years about retirement homes. We believe that there is no clear
definition in law of the meaning of a retirement home. Would it
include a retirement community, a retirement village, a
retirement home made up of individual apartments, or does it mean
a care home? We find this term is very, very unclear.
Furthermore, does it mean everybody in a retirement home is a
patient? I don't think so. So we would like to have some
rethinking about the use of the term "retirement home."
We are also very concerned
about a practice that is common among legislative bodies across
the country of leaving things to regulation. Regulations are not
subject to debate in the Legislature. If something is needed,
spell it out in the legislation. If a change is needed, amend the
legislation so we'll have full public debate. We are really
concerned in this bill how much is suggested to be covered by
regulation.
We see a really important
role for the Information and Privacy Commissioner. There is a
role identified, but we don't think it's strong enough. We
believe that resources and authority are needed. There should be
a yearly report to the Legislature on the citizens' experiences.
We believe that commissioners should have the power to
investigate, get evidence and determine redress for abuse of
privacy.
We argue that those who
hold the information, and there are a number of sources set out
in the proposed legislation, must get informed consent to release
information. We also believe-and I was interested to hear the
preceding presentation-that clearly partial consent should be
available to the individual. Some things are not necessary and
should not be included if the individual believes they don't want
it to be included.
1010
We argue that an oath of
confidentiality must be taken by all those who have access to
personal health records, and that any violations must feel the
full force of law. I again go back to that Toronto Star story of
Dr Sears, where he said he phoned hospitals, he phoned clinics,
he phoned receptionists, and he got the information. That is of
deep concern to us. We understand that it is in the public interest, and it can be
in the individual's interest, to have records available when
providing care. But the circumstances must be clearly
controlled.
We raise the issue around
fees. It appears in two places in the legislation. It seems to us
it's not much use having the theoretical right to
something-access to records or access to a complaint procedure-if
you cannot avail yourself of these rights because you haven't got
the money to do so. So we really have a significant concern
around the issue of fees.
We then also are very
concerned about the fact that employers should be able to ask
potential employees to sign a release to give them access to
their health information. This isn't a situation of equals. The
applicant has everything to lose if they say no, and even then,
according to Dr Sears, the employer will get it anyway. We really
believe that this government and this province have the power
under the Constitution to regulate that kind of action for
employers working in this province. So we would argue and plead
with you to prohibit that kind of application form, because in
our view it's very dangerous.
In concluding, we do
express concerns, and I know it's sort of incidental at the
moment, with the introduction of a smart card, one that links all
kinds of unrelated information. Inevitably, they will be linked
electronically, and privacy will be lost. I know I'm reaching
ahead a little bit with that comment, but we really do have deep
concerns about that, especially with the ease of getting access
through the electronic systems of information collection and
information distribution.
We believe we have to have
legislation that protects the privacy of our health information.
We don't believe that Bill 159 does the job. So we ask you,
please have legislation, but there's a lot of room for
improvement, in our view. Thank you very much.
The Chair:
Thank you. That affords us about three minutes per caucus for
questioning.
Mr Wood:
Have you had a chance to review the federal Privacy Act?
Ms Kaegi:
I've looked at it, but because this was the first one, we felt
that this was most crucial for our attention. It is the
responsibility of the national division of our organization.
Mr Wood:
Do I take it from that you're not really in a position to comment
on the federal act?
Ms Kaegi:
I wouldn't feel comfortable in commenting on it. I have looked at
it. I realize that it has import for what happens here, but I
also know, because my background is political science and I
taught local government and provincial government, the areas of
jurisdiction and what the province can do. So that was my
focus.
Mr Wood:
Second point: we've heard from some of the submitters that there
are certain kinds of research that effectively can't be done
because of small samples and so on, if you have to get the
consent of the people whose data are going to be used. Assuming
we come to the conclusion that's correct, there are indeed some
areas of research that can't be done if we don't permit the
researchers to use the data without consent, do you think we
should come down on the side of saying if you have the proper
oversight, in those limited cases, you can get access to the data
and to the research, or do you think we should come down on the
side of saying no, in those circumstances you can't do that kind
of research in Ontario? If we get to that point, which of those
routes would you encourage us to take?
Ms Kaegi:
I understand it's a very hypothetical question you've asked, and
you're struggling with that issue. My concern is, as we read
through Bill 159, the problem is if it's a very small sample, you
could ultimately identify the individuals. There has to be some
way to protect that.
I believe very strongly in
the importance of research. I think it's critical. We need it. On
the other hand, I believe the right of the individual to privacy
must be protected, and I believe there are ways that could be
developed to ensure the protection of that privacy, even with
small samples.
Mrs Sandra
Pupatello (Windsor West): I wanted to take you to point
9 that you made in your presentation regarding employment, when
you suggest that the legislation should prohibit employers from
asking for consent. It's of interest that it has come up several
times that already today when people sign a contract in order to
gain employment with a particular firm, they sign a contract,
often not realizing that that contract also automatically gives
consent to submit personal health information over to the
insurance company that's providing benefits to the employees.
People just don't realize that even today we've signed off on a
whole bunch of info that's going out there.
It's a delicate balance. An
insurer would have the right to know what preceding health
history there is in order to provide health coverage. It's just
that you're in a Catch-22: if you don't sign the contract, you
likely won't get the job. You've spelled out clearly what happens
when you don't sign the contract. What kind of recommendation
would you have from an insurer's point of view?
Ms Kaegi:
I'm not an insurance company, but if I go back in my own
employment experience, I was teaching and I was required to have
a medical to ensure that I did not have a communicable disease. I
had a chest X-ray and so on. I accepted that as needed for the
job. It seems to me that I was also, when I was employed,
therefore insured by the insurance policy of my employer, which
was Ryerson University. That was not a problem and I don't see
that it should be a problem. I think the fact that you would open
your whole medical history in a way that is totally unnecessary
to the needs of the job is unacceptable.
If there are certain
conditions that are required for public safety, for the
protection of public health, for a medical check of some sort to
be done, let that be part of the terms of hiring, but to just
give blank access to one's health records, to my mind, is totally
unacceptable.
You're right, most people don't know what they're
signing. We're all bad at reading forms, and that's something
most of us miss.
Mrs
Pupatello: Had you heard about the concept of a lockbox,
which has been advanced prior before this bill was tabled?
Ms Kaegi:
Yes.
Mrs
Pupatello: That might be something, at least in this
area of concern, where you would include in your lockbox
information that you felt shouldn't be passed on regardless, but
information related to public safety as to your employment might
be something that you wouldn't put in a lockbox. Do you follow
the concept of a lockbox?
Ms Kaegi:
Yes, I do, and that's why I talked about the possibility of
excluding access to some records. Yes, I do believe that's a very
important idea and I think it's one well worth following.
Ms Lankin:
I appreciate your presentation. I appreciate your drawing the
committee's attention to section 2(4)(vi), the inclusion of
retirement home as a health information custodian. I found that
an interesting inclusion in the act. In a sense, it is an
explicit acknowledgement of the fact that there are many such
retirement homes out there that are in fact collecting and using
personal health information because essentially they are
providing care to individuals. There are a range of retirement
homes out there. Before my mom's Alzheimer's and Parkinson's
proceeded to a point where she could no longer live
independently, she was living in an independent seniors' building
which was part of the retirement complex. There was a doctor who
had an office who came in once a week, so she had access to a
doctor who had a nurse in that office, but other than light
housekeeping services she applied for there was nothing in the
sense of a care facility there. Yet there are retirement homes we
know, which Mrs McLeod and myself have been arguing, should in
fact have standards of care. They should be regulated because
they are proxy nursing homes for the aged. It's interesting that
it almost acknowledges that in this legislation, yet in other
places we're denied the opportunity to talk about regulating
those homes.
1020
You've asked for clarity in
definition and I would agree, but do you see that there are some
private non-regulated facilities or practices-I don't even know
what to call them-residences out there that fall outside of all
of the regulation of nursing homes, charitable homes, long-term
care facilities, but which in fact do collect and have private
health information and should be regulated with respect to the
protection of private health information?
Ms Kaegi:
Yes I do, and if I may say, I made deputations to the Liberal
government calling for regulation of those kinds of homes. I made
deputations to your government-
Ms Lankin:
Through all of the Lightman reports.
Ms Kaegi:
-asking for the regulation of those types of homes. We're saying
yes, but until they're clearly defined, until the range of
services is prescribed in some regulatory way, we're very
uncomfortable. This is far too loose. Yes, we want regulation of
retirement homes, we desperately want it, but this we feel is far
too loose a phrase. If you mean by this a care home-and I believe
there is some definition around "care home"-then put that in the
legislation. But yes, we would love to have clear regulation of
retirement homes in the broadest context.
Ms Lankin:
In fact, through the Lightman report and all of that, there was,
as you know, an attempt to regulate the landlord-tenant
provision, but the whole issue of standards of care remains
outside of that. While I think you're right that there is a loose
definition of "care home" for purposes of this legislation, do
you see a way of importing that? I don't know if there's an
actual legal definition that would define which group we're
talking about.
Ms Kaegi:
We raised it because it was clearly a concern to us and has been
a concern for well over 10 years, certainly in terms of
government policy.
I would like to go back and
reconsider, and if I could send a note back to the committee I
would be more than willing to do it and consult our group. We
just hit the term and thought, "Whoa, we have a problem here."
That's why we suggested the term "care home," but I would be more
than happy if I could have an opportunity to go back and just
submit a document to the committee giving our collective response
to that question.
Ms Lankin:
That would be very helpful.
The Chair:
Thank you, Ms Lankin.
Ms Kaegi, you might wish to
check the Tenant Protection Act.
Ms Kaegi:
I have.
The Chair:
There are definitions that you'll find certainly cover "care
home" there.
Thank you very much for
taking the time to come before us here today.
Ms Kaegi:
Thank you very much.
IMS HEALTH CANADA
The Chair:
Our next presentation will be from IMS Health Canada. Good
morning and welcome to the committee.
Dr Roger
Korman: Thank you.
Ms Anita
Fineberg: Thank you.
Dr Korman:
Mr Chair and members of the committee, my name is Roger Korman. I
am president of IMS Health Canada. I'm joined by our chief
privacy officer and corporate counsel, Anita Fineberg. I welcome
the opportunity to appear before you to make submissions on Bill
159. You should have a package of materials that includes my
presentation as well as a response to the Ministry of Health and
Long-Term Care's consultation paper on the health sector privacy
rules.
We support the goals of the Ontario government to
pass personal health information legislation in the province. We
recognize that some amendments may be required; however, we
believe it is critical that the province introduce its own
legislation dealing specifically with health information moving
between the private, commercial and public sectors. Such
legislation is able to address the specific issues related to the
privacy of personal health information and promote an integrated,
efficient and accountable health system in Ontario. It will avoid
what we believe to be the unworkable and uncertain application of
the federal Bill C-6 to the health sector, a bill that did not
have in mind provincial health care concerns and the special
problems of the provincial health care system.
I will briefly provide you
with some information about IMS Health, how it's a private sector
company-we manage privacy issues-and our experience with the
legislative process on Bill C-6. I will then speak to two
specific issues: the definition of "personal health information"
in Bill 159 and the use of de-identified data.
IMS is the world's largest
health research company, operating in more than 90 countries. It
is recognized as a leader and essential partner in the
advancement of health. It serves the government, including Health
Canada, the Patented Medicine Prices Review Board, the Canadian
Coordinating Office for Health Technology Assessment, the
governments of Quebec and Ontario, as well as health researchers
and the pharmaceutical and biotechnology industries.
IMS employs the highest
standards in data collection, processing and statistical analysis
in collecting data from over 65,000 sources in Canada, including
hospitals, pharmacies, pharmaceutical manufacturers, wholesalers
and physicians. More than 200 million records are processed each
year to yield extensive information databases of diagnosis and
disease treatment, including prescribing patterns and
pharmaceutical utilization trends.
IMS collects no
identifiable patient information. We require that patient data be
de-identified prior to being sent to us. We further screen
records prior to acceptance to ensure they are de-identified. In
addition, we tightly control access to data and restrict its use
to those employees who require it as part of their employment
responsibilities. Our information practices are routinely subject
to independent audit, and we enter into confidentiality
agreements with our data suppliers, employees and clients.
As a leader in adopting
measures to ensure appropriate and responsible use of provider
information, we developed a privacy code based on the principles
in the Canadian Standards Association's Model Code for the
Protection of Personal Information, known as the CSA code. The
Quality Management Institute, QMI, a division of CSA
International, has reviewed the IMS privacy code. The practice of
IMS Health with respect to the management of information
respecting health professionals has been, and continues to be,
audited by the QMI. In September 1999, IMS became the first
company in Canada to achieve registration based on CSA's privacy
standard. In addition, we retain Coopers and Lybrand to conduct
regular independent audits on our data collection procedures,
specifically to ensure that we are not provided with any
patient-identifiable data. In more than 40 years, we have never
had a single breach of patient confidentiality.
We were among the first
companies to make representation to the Quebec Privacy Commission
following the passage of Bill 68 in 1994 and have been authorized
to continue our business practices under this law. As you have
heard, the Quebec legislation will probably be deemed to be
substantially similar to Bill C-6. In addition, we have
voluntarily created a health information advisory board in
Quebec, made up of pharmacists and physicians, to provide
guidance concerning our use of health information.
In November 1999, I
appeared before the Senate standing committee on social affairs,
science and technology to present evidence on the problems Bill
C-6 would create for health research and generally why Bill C-6
is an unworkable model for health sector activities. I identified
two significant problems with Bill C-6 and the negative effects
it would have on health research. While Bill C-6 recognizes the
value of research by granting an exception from the requirement
to obtain consent for the use and disclosure of personal
information, there is no corresponding exemption for the
collection of such information. In addition, the definition of
"personal information" in Bill C-6 is unclear.
These are two reasons why
we believe it is necessary to address personal health information
in specific provincial privacy legislation and why I am appearing
before this committee today. IMS policies and audited practices
speak for themselves in confirming that we support the highest
levels of privacy protection for identifiable personal health
information. However, we also recognize that in certain
circumstances particular to the health sector, privacy must be
balanced with important societal goals such as health research
and system accountability.
We also believe the same
rules should apply to the use of health information held by the
private sector as that held by the public sector. The Bill C-6
distinction between commercial and non-commercial activities is
simply not workable and fails to recognize the current realities
of the health sector, where it is estimated that private sector
health care spending represented 29% of total health care
expenditures in the year 2000.
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That is why we support the
efforts of the Ontario government in introducing Bill 159 to
provide for consistent rules among those health information
custodians who operate in the private and public sectors. As does
Commissioner Cavoukian, we believe the bill may not be perfect,
but we urge the Ontario government to proceed. The federal
government recognized there were problems with the application of
Bill C-6 to the health sector and provided a deferral of the
application of the legislation to health information. Therefore,
the federal legislation dealing with personal information generally
should not be used as a measuring stick for the Ontario
initiative specifically addressing personal health
information.
With respect to the
definition of "personal health information" in Bill 159, we
support Commissioner Cavoukian's proposed amendment to that part
of the definition of "personal health information" to clarify
that information must both relate to an identifiable individual,
as set out in paragraph (a) of the definition, as well as meet
the criteria set out in paragraph (b) of the definition in order
to satisfy the definition of "personal health information." This
clarification is particularly important to ensure that paragraph
(b)(viii) is not construed to afford privacy protection to
provider information that is linked to any health information, as
opposed to identifiable health information.
We further support the
provincial commissioner's view that information about the
employment and business practices, activities and transactions of
individual health services providers should not be included in
the definition of "personal health information"; that such
information should be considered professional in nature, rather
than personal health information. We also agree with the
commissioner that such information may be used to objectively
assess the quality of provider services. Examples of the use of
IMS data for these purposes are included in our information
packages.
With respect to
de-identified data, we believe it is not appropriate to place
limitations on the collection, use and disclosure of information
that has been de-identified or anonymized. We agree that such
information should not be re-engineered to re-identify the
individual, nor should it be published in a manner that could be
used to identify the individual. However, we believe that the
definition of "personal health information" set out in Bill 159
already addresses these issues. If there is a concern that the
information "can be used or manipulated by a reasonably
foreseeable method to identify the individual, or" can be "linked
or matched ... to other information that identifies the
individual," then it falls within the definition of "personal
health information" and is subject to the provisions of Bill
159.
The ability to use
de-identified data for many health sector purposes will encourage
the use of privacy-enhancing technologies to encrypt personal
health information and remove identifiers. Accordingly, we
support the ministry's position and the current exclusion of
anonymous or de-identified information as found in clause 7(c) of
Bill 159.
The courts have not
recognized privacy rights in de-identified information. In the
case of Source Informatics Ltd, the United Kingdom Supreme Court
of Judicature, Court of Appeal, found that the concern of the law
is to protect an individual's personal privacy. If an individual
could not be identified from the information at issue, then
disclosure of such information could not violate that right and
the individual's privacy was not at risk. A copy of the case is
in your information packages.
In summary, as a private
sector company that has been referred to as a model of privacy
compliance, we fully support the goals of the Ontario government
to pass personal health information legislation in the province.
We recognize that some amendments may be required. Nevertheless,
we believe it is critical that the province introduce its own
legislation dealing specifically with health information whether
that information is shared as part of a commercial or
non-commercial activity. Such legislation will be able to address
the unique issues related to health information and promote an
integrated, efficient and accountable health system in Ontario.
We believe these goals cannot be achieved under the operation of
Bill C-6.
Thank you very much for
allowing me the opportunity to make this submission.
The Chair:
Thank you very much. That affords us about two and a half minutes
per caucus for questioning. This time we'll commence with Mrs
McLeod.
Mrs
McLeod: You've obviously been following the hearings
very closely and you're responding, as well as to what's in the
bill, to Ms Cavoukian's recommendations for amendments. The fact
that you didn't address the amendment that she proposes to put a
lockbox on identifiable information I'm assuming means that
doesn't create problems for you as long as the definition of
personal health information is clearly identifiable information,
that having a lockbox on that would not interfere with your
research?
Dr Korman:
That's correct, insofar as we do not deal with any identifying
personal health information.
Mrs
McLeod: Right. Is there any danger in having a lockbox
that it could limit access to anonymous information? You have the
health information you need de-identified. Would a lockbox
prevent you from getting that de-identified information and
therefore skew the kinds of samples that you're getting for your
research purposes?
Ms
Fineberg: No, it would have no effect on our data and
our research whatsoever.
Mrs
McLeod: OK. That's good to know. On page 7, if I've got
the right one, you talk about the fact that you have to have
consistent rules for the private sector and the public sector. In
what way do you see Bill 159 providing that consistency? It's
clear that it addresses the public sector, but how do you see it
providing consistent rules in the private sector?
Ms
Fineberg: For example, in Bill 159, as I understand it,
laboratories are health information custodians. There are many
private laboratories in the province of Ontario, as there are
many private pharmacies, for example, which are also included as
health information custodians. So by that inclusion in 159, the
Ontario legislation captures that part of the commercial private
sector health care system as well as the public part; for
example, the Ministry of Health is a custodian. So what you have
in 159 is consistent rules with respect to the information that
goes between the private and the public parts of the health
system.
Mrs McLeod: And the health care
professional working in a private setting is a health information
custodian.
Ms
Fineberg: Correct.
Mrs
McLeod: We've had concerns expressed to us that this
bill would proceed without the companion piece dealing with
commercial activities in Ontario more broadly. Are there aspects
of operation in the commercial private sector that aren't caught
by Bill 159, by those definitions, that need to be addressed in
companion legislation, if not in this bill? We've had the issue
of employers, insurance companies-
Ms
Fineberg: That's correct. Those aren't issues for us
with respect to our information and our operations, but, having
sat here for a few days, obviously the entire scope of entities
out there that could possibly have health information isn't
covered. But that's for others to speak to.
Mrs
McLeod: Your biggest concern-am I out?
The Chair:
Yes, thank you. Ms Lankin.
Ms Lankin:
Your presentation is very clear, and I appreciate that in the
circumstance of your company you're dealing with de-identified
information so issues of consent are not really of concern or a
matter to you.
But, Ms Fineberg, perhaps I
can ask you this, because you've been sitting monitoring the
presentations so far and you've heard the presentations from ICES
and CIHI and Canadian health information research and I think you
would appreciate that the committee has received some conflicting
information. Some have said straight out that for the research
that their organizations do and for any systems management
research they could envision, de-identified information is fine.
Others, for purposes of epidemiological longitudinal studies,
have indicated the need to be able to match to other
databases.
Similarly this morning, the
presentation from the Cardiac Care Network-fantastic success
story; very clear, though, that identifiable information to track
the individual, in most cases with consent but not always with
consent, exists in the province.
Do you, as a research
entity, have any comments on that broader issue of the societal
good, and can that research by and large be done with consent or
are there times when identifiable information should be provided
for research purposes with all of the ethics, protections,
because the research is just needed?
1040
Dr Korman:
If I may, I think you have your hands around the entirety of the
conundrum.
Ms Lankin:
Yes. I want you to give me the answer, though.
Dr Korman:
Perhaps one way to parse the issue is between collection versus
disclosure. I appreciate the need to create longitudinal
databases and to be able to study health issues over time,
because the issues that we are simply not able to deal with and
those with the greatest consequences for the system are chronic
care issues, for which you do need longitudinal information. It's
one of the reasons why the technology needs to advance with
respect to encrypting information. If information can be
encrypted and then bridged or matched, it would enable
information to be anonymized and then made available for research
studies.
Having said that, while I
can foresee instances where identified information has to be
collected, there's no foreseeable case where it has to be
disclosed. So that's another way perhaps to think of separating
the problem.
Ms
Fineberg: If I might-
The Chair:
Sorry. We're cutting into Mr Wood's time. Mr Wood.
Mr Wood:
Did I correctly infer from what you said earlier that you think
it would be a bad idea to have two privacy regimes for health
care in Ontario? I thought I drew that from what you said. We
could, after all, pass an act that's not substantially similar to
the federal act, which gives us two privacy regimes. I took it
that you thought that would be a bad idea. Did I take that
rightly or wrongly?
Ms
Fineberg: That's correct, because then what would happen
is, as of January 1, 2004, depending on what kind of recognition
was given to the Ontario legislation, Bill C-6 would apply to the
commercial activities of the health sector in Ontario.
Mr Wood:
One option we have before us, among many, is to base our act on
the federal act and put in health care provisions. Would you have
an objection in principle to doing that?
Ms
Fineberg: The difficulty, as I understand it at the
moment, is that, as we spoke to, there is a deferral of Bill C-6,
the application to health information, until January 1, 2002. At
the moment, therefore, there are no rules in Bill C-6 that apply
to health information. In addition, even though Bill C-6 speaks
to substantially similar legislation, you've also heard that
there are no criteria in Bill C-6 to set out what that's all
about, and there's no process.
Industry Canada is
currently developing a white paper that will set out both the
criteria for substantial similarity and the process by which that
will be determined, so that the matter gets to the
Governor-in-Council, who ultimately decides on what
"substantially similar" legislation is. So at the moment there
are many uncertainties with respect to what is, what may be, what
could be substantially similar legislation.
Mr Wood:
What I'm inviting you to comment on is, if we took the federal
act as a model and put in, consistent with the federal act,
various provisions to deal with health care, do you think that's
a valid approach or not a valid approach?
Ms
Fineberg: Maybe when the federal act does have rules for
health information, because at the moment it doesn't. So we need
to know, in my opinion, two things before we start comparing line
for line, for example, Bill 159 to the federal Bill C-6. We need
to know what the federal Bill C-6 rules will be for health
information-that's number one-and, number two, we need to know
what the criteria for substantial similarity will be. Then I
think we can look at the Ontario legislation and perhaps do a
more detailed comparison, to answer your question.
The Chair: Sorry, Mr Wood. I'm
afraid we're over our time.
Thank you very much for
coming before us and making your presentation today.
ARCH
The Chair:
Our next presentation will be from ARCH: A Legal Resource Centre
for Persons with Disabilities. Good morning and welcome to the
committee. Please proceed.
Ms Lana
Kerzner: My name is Lana Kerzner. I'm a lawyer with
ARCH, a legal resource centre for persons with disabilities. ARCH
is a legal aid clinic serving the community of persons with
disabilities throughout Ontario. ARCH represents individuals with
disabilities in test-case litigation, provides summary legal
advice and also engages in law reform and public legal education
activities. ARCH is one of a number of legal aid clinics serving
low-income communities in Ontario.
I'm going to begin by
providing a typical example of how health privacy legislation
affects persons with disabilities. The example is based on
typical calls we receive at ARCH on a daily basis. It will
illustrate the far-reaching effects that personal health
information has on persons with disabilities.
Joan has multiple
sclerosis. She is able to work, but due to muscle stiffness and
fatigue she requires accommodations by her employer. She must ask
her employer to accommodate her at work and, in order to receive
the accommodations she needs, her employer asks that she provide
personal health information. She does so, does obtain the
accommodations and is able to continue working for a while until
her condition progresses and deteriorates further. She is now no
longer able to work.
She now has no income and
no job and needs to apply for long-term disability insurance
through her employer to provide income support. In order to fill
out the application for long-term disability insurance, once
again she's asked for her health records. She attempts to access
her health records but is unable to access the health records she
needs to prove eligibility. The insurance company denies her
long-term disability insurance. She is still not working and has
no income.
She next attempts to apply
for the Ontario disability support program, provincial government
disability payments. In order to fill out the application, once
again she is asked to provide very detailed personal health
information regarding her condition. She provides this
information and successfully receives Ontario disability support
program payments and now has some income support.
Unfortunately, her
condition continues to deteriorate. She now uses a wheelchair and
is no longer able to use the regular public transit system she's
been using. She now needs to apply for accessible transit within
her community and has to fill out yet another application. The
application once again asks for very detailed personal health
information regarding her condition. She accesses this health
information and does in fact receive the publicly accessible
transportation she's applied for.
I'm not going to continue
to tell Joan's story because I believe I have told enough to
illustrate the following points: in order to work, obtain minimal
income support, use public transportation and generally
participate in all aspects of society, she has needed to obtain
extensive access to her health records. Further, she has needed
to divulge her medical records to a wide variety of people. At a
minimum, at least all of the people to whom she has disclosed
information know highly sensitive and personal information about
her health status. What she doesn't know is whom else these
people might have disclosed her personal health information
to.
In order to participate
fully in Canadian society, it is of utmost importance to Joan and
to the entire community of persons with disabilities that there
be a law in place which, first, ensures they have access to their
health records and, second, ensures they have control over who
has access to their records and that their records, with very few
exceptions, are not disclosed without their consent.
In general, ARCH strongly
supports the need then for a comprehensive legal framework to
protect personal health information. However, ARCH does not
support Bill 159 as it is currently worded. ARCH is concerned
about the bill's narrow scope and multitude of exceptions. ARCH's
recommendations focus on strengthening and broadening privacy
protections and ensuring that the legislation is sensitive to the
concerns and accessible to the community of persons with
disabilities. Our submission focuses solely on those issues that
are of relevance to persons with disabilities. The fact that our
submission does not comment on other aspects of Bill 159 should
not be taken to mean that ARCH is supportive of them. In my oral
comments I will not review all of the recommendations that are
covered in our written submission.
1050
Our first recommendation
relates to the definition of "health information custodian." ARCH
believes that the definition of "health information custodian" is
too narrow and recommends that it be broadened in two ways.
Firstly, with respect to
the Ontario disability support program I mentioned a minute ago,
the Ontario disability support program is a form of provincial
disability income support. Individuals who apply for and are in
receipt of ODSP, as we frequently call it, must divulge large
amounts of their personal health information for this purpose.
Curiously, only a limited aspect of the ODSP program, namely
employment support, is covered under the definition of "health
information custodian." The concern is that the bill provides
very limited coverage for health records held by the Ministry of
Community and Social Services in the context of ODSP. The way
Bill 159 reads, an individual who is in need of social
assistance, by virtue of that need, must forfeit their right to
privacy.
ARCH recommends the
Ministry of Community and Social Services, in connection with the
administration of the
Ontario disability support program, be added to the definition of
"health information custodian."
ARCH has a second
recommendation relating to the definition of "health information
custodian," and this relates to residential premises in which
persons with disabilities live and where care is provided. There
is a broad range of residential premises in which persons with
disabilities live and where they also receive care services. In
general, Bill 159's definition of "health information custodian"
does not cover many of these premises. These premises accumulate
large amounts of health information about their residents. Some
of the residences in which persons with disabilities receive care
are called care homes, and this term is defined in the Tenant
Protection Act. Retirement homes fall within the definition of
"care home" and retirement homes for elderly persons is a
category of health information custodian in the bill.
We recommend that the
problem could partly be solved by replacing the category of
"retirement home for elderly persons," which is found in Bill 159
and which has no meaning in law, with "care home," which is
defined in section 1(1) of the Tenant Protection Act. This is
only a partial solution to the problem, so we further recommend
that the definition of "health information custodian" be extended
to cover all living accommodations in which persons with
disabilities reside and receive care.
I started off by
emphasizing the significant impact that personal health
information has on all aspects of the lives of persons with
disabilities.
ARCH recommends that the
communities most affected by the proposed legislation must be
involved in its administration and enforcement. ARCH makes two
recommendations on those lines.
Firstly, ARCH recommends
that the assistant commissioner for personal health information
envisioned by the bill be required by the legislation to be a
member of, or have proven experience in and knowledge of, the
communities most affected by the legislation, including the
community of persons with disabilities. Additionally, ARCH
recommends that a sufficient number of persons to whom this
assistant commissioner may delegate his or her duties be required
by the legislation to meet these same criteria.
ARCH has similar concerns
regarding the research ethics review body. Bill 159 does not
specify who will comprise the research ethics review body or how
this determination will be made. ARCH similarly recommends that
the legislation require that this body be comprised of
individuals who have a direct interest in and knowledge of issues
relating to health research, including persons with disabilities,
and those with an interest in patients' rights.
The issue of genetic
testing is not covered specifically in the bill at all.
Information from genetic testing, though, regarding one
individual provides information about that individual's blood
relatives. None of us has complete control over health
information regarding ourselves, as it may result from test
results conducted on one of our blood relatives. In addition,
because genetic test results can indicate a predisposition to
becoming disabled in the future, discrimination has been shown to
occur on the basis of this information. ARCH therefore recommends
that the legislation contain specific provisions devoted to the
concerns created by genetic testing. We recognize this could be
an area of great sensitivity and recommend that wide consultation
be held regarding this issue and that the consultation must take
into account the perspectives of those directly affected.
The final recommendations
I'm going to make this morning relate to fees. ARCH is concerned
that Bill 159 contains requirements that fees be paid both for
individuals who want to access their records and for individuals
who wish to make a complaint to the commissioner. Compared to the
general population, a large portion of the community of persons
with disabilities have very low incomes. We often receive calls
from people who desperately require copies of their medical
records but for whom the fees charged are prohibitive.
Bill 159 leaves details
regarding the fees for access to records to be set out in the
regulations. ARCH recommends that the legislation specify that
the fees must not exceed the cost incurred by the health
information custodian to provide access. Bill 159 does allow for
a waiver of the fee, but the waiver does not sufficiently protect
for low-income individuals. ARCH recommends that a waiver of the
fee should be mandatory when an individual is in receipt of
social assistance benefits or is otherwise in financial need.
Bill 159 also requires that
a fee be paid in order to make a complaint to the commissioner.
This means that the privacy rights enshrined in the legislation
are only available to those who can afford to pay for them. When
a remedy demands a fee that an individual cannot afford to pay
because the remedy is not accessible, the right no longer exists.
ARCH recommends that the bill be amended to eliminate any
requirement to pay a fee for the right to launch a complaint to
the commissioner.
In conclusion, ARCH wishes
to express its appreciation for this opportunity to present the
concerns of the community of persons with disabilities to the
committee and we hope our submissions have been of
assistance.
The Chair:
Thank you very much. That leaves us about three minutes for
questioning, so we'll give it to the next party in rotation.
Ms Lankin:
You've raised an issue which a couple of presentations have
touched on but not gone into in any depth, and that's the concern
around genetic testing. I recognize you're recommending a broader
consultation, but can you tell us a bit about what ARCH has in
mind, what kinds of provisions you think are necessary and in
what way would they differ from regular provisions if we agree
the intent of this is to have stringent protections?
Ms
Kerzner: We're not making recommendations at this point
for specific sections or for a way that the legislation could
specifically be drafted. At this point we're just raising the
concern that we believe it needs to be thought about carefully
and treated differently, because it's one discrete area where people do not have
control over health information regarding themselves. The concern
is that a family member's genetic information will be divulged
without their blood relatives knowing, and therefore their
privacy rights will be infringed. We haven't gone further into
suggesting how this could be fashioned, but just to emphasize the
importance of consultation.
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Ms Lankin:
You're also recommending that supportive housing and other such
residences where care is provided be included under the
legislation. I appreciate your recommendation around replacing
"retirement home" with "care home." Is there an identifiable
definition we can look to to encompass all of these other
supportive housing programs?
Ms
Kerzner: That's difficult because there's a whole host
of different residences in which people with disabilities reside
and receive care.
Ms Lankin:
I'm aware of that.
Ms
Kerzner: Often they're informal, and often they are not
necessarily covered by any specific piece of legislation. It's
not an easy solution like saying "care home," which has an
obvious definition in the Tenant Protection Act.
Ms Lankin:
What would you recommend we do, then?
Ms
Kerzner: I don't know that I'm in a position right now
to do more than provide information about the kinds of residences
that exist; and for the committee to look at that on a broad
scale and be sure the wording in the legislation covers them
broadly.
Ms Lankin:
I have one last question. I also was concerned to see provisions
of Ontario Works and the Ontario disability support program
exempted where there's a conflict with this legislation. In
particular, I'm thinking under ODSP where it's not a doctor who
determines eligibility of disability based on medical
information, it's someone within the ministry structure-a public
service worker-who makes that determination. They have to have
access to an incredible amount of sensitive personal health
information. They're governed of course under freedom of
information and protection of privacy legislation. Do you see
that protection being sufficient for the protection of this
private health information, or do you see a superior protection
in Bill 159 that should override and govern those
individuals?
Ms
Kerzner: We believe that because it relates to personal
health information, and the proposed legislation is specifically
geared to the concerns about health information rather than other
information that is collected by the government, which is of a
very different nature and quality, because this proposed
legislation specifically deals with health information, we
believe it's important that it would be this legislation that
would cover the information held by the ministry. We have a
concern that the bill, as it stands, only covers one portion of
the ODSP, which is employment supports. We don't understand why
the distinction is made and believe that all of those programs
should be brought in.
Ms Lankin:
Terrific. Thank you very much.
Ms
Kerzner: You're welcome.
The Chair:
Thank you for appearing before us here this morning. We
appreciate it.
POLICE ASSOCIATION OF ONTARIO
The Chair:
Our next presentation will be from the Police Association of
Ontario. Good morning and welcome to the committee.
Mr Bruce
Miller: Good morning. I'd like to start by thanking the
Chair and the members of the committee for the opportunity to be
here today. My name is Bruce Miller. I'm the administrator of the
Police Association of Ontario. I was a 22-year veteran of the
London Police Service prior to becoming administrator. I've
worked in uniform patrol, vice, break and enter and the major
crime squads. Appearing with me is Constable Isobel Anderson.
Isobel emigrated from Rhodesia, which is now Zimbabwe, where she
was a police officer. She joined the Ottawa Police Service in
1994 and has served there ever since. Together, we will try to
give you the perspective of front-line police personnel in
Ontario on an issue of increasing concern.
We are appearing today on
behalf of the 13,000 members of the Police Association of
Ontario. Our chair, Terry Ryan, and one of our directors, Brenda
Lawson, are here today, as are the president and the
vice-president of the Ontario Professional Fire Fighters
Association, to lend their support.
The PAO was founded in
1933. The PAO is the official voice and representative body for
Ontario's front-line police personnel and provides
representation, resource and support for Ontario's 70 municipal
police associations. Our membership is comprised of police and
civilian members of municipal police forces.
The protection of an
individual's health information is extremely important to our
members. We respect and endorse the need for protection of this
information. However, in certain circumstances the right to
privacy has to be balanced with the need to protect other members
of society.
I don't think there is any
need for me to explain to this committee the escalating incidence
of HIV and hepatitis B and C in the population. We are here today
to stress the need for emergency workers, victims of crime and
good Samaritans to be able to access an individual's health
records if there is a risk someone may have been infected. The
police officer or the court security special constable who is
bitten and then told by the offender he has AIDS should be able
to access the offender's health information to be able to make an
informed decision on treatment. A sexual assault victim has the
same common sense right. A good Samaritan who performs
mouth-to-mouth resuscitation on an individual has the right to
know whether or not he or she has put his or her own health at risk. We believe
this is common sense legislation.
I don't think I need to
tell you there are high-risk and high-incidence carriers of these
communicable diseases in every region of the province. These
high-risk individuals include, but are not limited to,
intravenous drug users, prostitutes and many career criminals.
For obvious reasons, these identified groups are liable to a
higher incidence of interaction with the police. This sets the
stage for the increasing amount of needle sticks, deliberate
attacks and other exposures that place our members at risk.
However, while our members are at increased risk, the rest of
society is not immune.
Medical experts tell us
that today's post-exposure treatments are based on best guess and
trial and error. That is small comfort for emergency workers,
victims of crime and good Samaritans who are exposed to
free-flowing blood or other bodily fluids. This fact underscores
the need for a person, in conjunction with his or her physician,
to make decisions based on all possible information. The ability
to access the personal health information of the person who may
have infected them would allow these people to make properly
informed decisions about post-exposure treatment. They need to be
properly informed so they can make informed medical
decisions.
The so-called drug cocktail
that is administered to post-exposure victims brings its own
medical risks. We can advise you that persons who have submitted
to the treatment report debilitating side effects. Severe
headaches, perpetual nausea, total exhaustion, hives and hair
loss are just some of the known side effects. These can last for
several months, depending on the individual, the combination of
drugs taken and the duration over which they are
administered.
The Canadian Police
Association is tracking one case involving a police officer from
a police service in the Maritimes who is gradually losing his
eyesight since taking the treatment. The person had no problems
with his vision prior to the treatment. The treatment is
relatively new. Who knows what other long-term effects there may
be from these treatments?
Today's best possible
treatment can be best described as overkill for the offending
virus. Although we are pleased to have it available, we don't
want to take it unless we have to. We need legislation to be
entitled to as much information as possible in order to be able
to make an informed decision with our physicians as to what, if
any, treatment is required.
A number of years ago, I
performed CPR on an individual, who unfortunately did not
survive. The coroner was concerned that that individual may have
had spinal meningitis and ordered an immediate autopsy that
confirmed his suspicions. I was called at home late at night and
told to attend the local emergency ward to begin treatment, which
I did. If the individual had survived, I might not have been
privy to the same information.
I will now ask Isobel to
speak of her experiences.
Ms Isobel
Anderson: Good morning. My name is Isobel Anderson. As
Bruce stated, I'm a police constable in Ottawa. I would like to
tell you about my experience and why we need to access an
individual's medical information in certain circumstances.
In October 1997, I arrested
a male for armed robbery. While I was searching him, I reached
into one of his pockets and felt a stab of pain in my hand. When
I pulled my hand out, I found there was a hypodermic needle
impaled in my palm. I immediately went to a local hospital, where
my worst fears were confirmed. The doctor there informed me there
was a possibility I may have been infected with HIV or hepatitis
C. I was advised that if I started treatment with a chemical
cocktail which includes AZT within two hours of the exposure that
it may eliminate or reduce the risk of me contracting HIV.
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The suspect initially
refused to be tested. He later agreed, much later, hours later. I
will only say it's fortunate for me that he was hungry, because
he made a deal with the officers in the cellblock that if they
bought him a Big Mac meal from McDonald's, he would agree to a
test. He tested positive for hepatitis C but negative for
HIV.
I took the AZT and the
other drugs for three days until my initial HIV test came back
negative. After consulting with my physician I decided to
discontinue the treatment. The side effects from the treatment
were horrendous and included hives, hair loss and chronic pain. I
had to wait six months for the final HIV test, as there is a
lengthy incubation period.
I was fortunate in that I
did not contract any diseases. However, the toll was enormous. I
had to be concerned about the possibility of infecting family
members as well as my co-workers. At the time, I was married with
three children. The prolonged side effects and uncertainty
affected my home life. I had been having marital problems prior
to this incident, but this turned out to be the final straw. My
husband and I separated soon after that.
My personal experience has
led me to become involved in some of the issues surrounding how
to protect emergency workers, good Samaritans and victims of
crime. I have campaigned together with Chuck Stahl, member of
Parliament, for the introduction of Bill C-244, the Blood Samples
Act. This proposed legislation was put on hold by the calling of
the federal election last fall. It has recently been reintroduced
as Bill C-217. The proposed legislation would allow for the
mandatory testing of individuals who may have accidentally or
intentionally exposed another person to their bodily fluids.
Certainly the introduction of this legislation would be extremely
positive. However, testing can take time and false results are
possible.
This is all about
victims-and I was a victim-being able to make informed decisions
based on all the available information. It would have been of
great assistance to me that night.
Mandatory testing is one
needed component, while the ability to access medical information
is the other.
I will now ask Bruce to conclude our
presentation.
Mr Miller:
First of all, we'd like to take this opportunity to thank all
members of government for the law-and-order initiatives that have
been either proposed or legislated. We appreciate all of your
continued commitment to community safety. However, this is
another area where we are asking for your assistance. We are
appearing before you today with what we feel is a request for
common sense legislation. We believe section 33(a) of the
proposed act can be used to access this information but needs to
be clarified to include all the situations we've discussed.
We have countless examples
of deliberate attacks on police personnel by people with HIV and
other diseases. Rubber gloves and universal precautions only
reduce the risk. We have had members spat upon, deliberately
bitten and exposed to free-flowing blood and other bodily fluids
by an attacker. Lax federal laws and inadequate legislation only
serve to increase these incidents.
We are seeking your
assistance not only to protect our members but all emergency
workers, victims of crime and good Samaritans. They need your
support. We don't doubt there may be unfounded concerns raised by
civil libertarians. This is not an attempt to gather further
evidence. This is not an attack on an individual's rights. This
is common sense legislation designed to help protect victims and
their families, because, at the end of the day, anyone involved
in a situation like this is a victim.
In closing, I'd like to
take this opportunity to thank the committee for allowing us to
appear here today. We'd be prepared to answer any questions that
you may have.
The Chair:
Thank you very much. That affords us about two and a half minutes
per caucus.
Mr Wood:
If we were to prepare legislation along the lines of what you've
suggested, would you have a problem if the information were
available only through judicial process; in other words, through,
in effect, a search warrant?
Mr Miller:
My only concern with judicial process, Mr Wood, would be the time
element. The treatment has to begin within approximately two
hours after a person has been affected. So we have to have the
ability to get a speedy search warrant. That would be the only
stumbling block to that.
Mr Wood:
Would you have any problem with restrictions on the use of the
information solely for the treatment of the person involved in
the incident?
Mr Miller:
None at all. Our objective is to protect emergency workers, good
Samaritans and victims of crime. We're not looking for any other
avenues.
Mr Wood:
Would you have any problem with restrictions on disclosure of the
information to any third party? If it was disclosed to the
caregiver and the person involved in the incident, would you have
a problem on restrictions about disclosure to anybody else?
Mr Miller:
Certainly I don't see the need for any disclosure to anybody
else. We're just trying to protect these groups and the
individual's rights as well.
Mr Wood:
Those are my questions.
Mrs
McLeod: I think Mr Wood's last question was getting
around the fact that the recipient of the information about that
other individual's health record is not bound by anything that's
in Bill 159 currently. So the issue of how do you then protect
the subsequent disclosure of that health information is a really
difficult issue for us to deal with.
You mentioned clause 33(a)
of Bill 159, which does allow for the disclosure of personal
health information where there is a risk. In the situations that
you've described, particularly an assault on a police officer,
perhaps a sexual assault where the person who is alleged to have
made the assault can be identified, do you think that the health
care custodian would consider that evidence of risk and that that
would be justification under 33(a) to provide the information or
to recommend a treatment to the individual who was assaulted?
Mr Miller:
I would hope the health custodian would. That's where proper
training, in my opinion, needs to come in for the health
custodians, to explain that this venue was possible for these
affected groups. If there isn't some procedure or process
explaining it written out, certainly the health custodian may
well be reluctant to give that information.
Mrs
McLeod: You mention as well the good Samaritan and you
reference giving of CPR. That inclusion could broaden the
application of 33(a), if you specified that, basically anybody
who gives CPR to somebody. That would really broaden the access
to personal health records significantly. Would you agree? Do you
think it needs to be that broad in interpretation?
Mr Miller:
Certainly it would broaden it, but we have citizens out in
Ontario who actually risk their lives to save individuals.
They're stopping to help out at serious accidents. They're going
far beyond the call of what everybody expects from an everyday
citizen and they need to be protected. They're doing these
actions; we should be supporting them.
Ms Lankin:
Could you tell me how you would like us to describe these
circumstances in the legislation? Is it that anyone who is
exposed to anybody else's bodily fluids would have access to
health information?
Mr Miller:
Certainly we'd have to sit down and draft language to come up
with that. We're just speaking to the general intent.
Ms Lankin:
But who do you envision? You just mentioned anyone who gives CPR,
I guess like a lifeguard who pulls a child out of the pool, for
example, someone on the side of the street, perhaps someone who
is a victim of an assault by another-not a police officer who is
a victim of an assault but an assault victim, whether the
assaulter is a known criminal or the assaulter is someone in a
position of authority. It can happen. Recently there was an
alleged circumstance in one of our correctional facilities that
an individual was beaten by authority figures. Would that
individual then have the right, if there were scrapes and
exposure to bodily fluid, to get access to the records of those
individuals?
Mr Miller:
Sorry, you lost me on the last one.
Ms Lankin: A prisoner in a jail
cell recently alleged that he was beaten by a number of
correctional officers. It's alleged. I'm a former correctional
officer; I understand some of the things that happen in these
institutions. What would the rights of that individual be under
what you're proposing? Would that prisoner be able to get access
to the personal health records of the correctional officers?
Mr Miller:
I don't think we're trying to limit anybody's ability to access
it if it's a valid situation. Certainly in the proposed act there
are provisions for correctional facilities to have medical
records.
Ms Lankin:
No, I'm talking about the prisoner getting the guards'
records.
Mr Miller:
I realize that and I'm saying we're not trying to limit anybody's
ability if it's a valid circumstance, but certainly the proposed
act does recognize the danger when it allows correctional
facilities to access inmates' records. It's certainly a valid
concern. You worked in a correctional facility and you know some
of the dangers that you and your co-workers were faced with on a
daily basis.
1120
Ms Lankin:
I'm just trying to understand. Obviously, I don't think it could
be crafted in a way that was geared to just police officers,
emergency workers and good Samaritans. It would have to be a
provision that's very broad, that wherever there is an exchange
of bodily fluids under duress, I guess, that person would then
have access to medical information.
Let me ask you the next
question. What range of medical information would you be seeking?
Anything in the person's history? Anything that's a communicable
disease? What are the restrictions in terms of what information
you're accessing?
Mr Miller:
Obviously I'm not a physician, but the restrictions would be only
diseases that could infect one of these affected groups. That's
all the medical information we're looking for. Does the person
have hepatitis A? Does the person have hepatitis C? Does the
person have HIV? And there are several other diseases as
well.
Ms Lankin:
Meningitis, you mentioned.
Mr Miller:
Yes.
Ms Lankin:
Once you're the recipient of the information, you said you didn't
have a problem with having restrictions on what you can do with
it. I'd just ask you to turn your mind to potential workers'
compensation insurance claims that you may be making if it's in
the course of duty, or a good Samaritan who may choose to look
toward a lawsuit or something. That information would not be able
to be submitted in those future proceedings, then.
Mr Miller:
Our concern is the health welfare of emergency workers, including
police officers, firefighters, ambulance attendants, victims of
crime, good Samaritans. That's our concern. We're not looking to
gather any other information, and certainly legislation could be
put in place to prevent the dissemination of that
information.
The Chair:
Thank you for coming before us this morning. We appreciate
it.
ONTARIO DENTAL HYGIENISTS' ASSOCIATION
The Chair:
Our next presentation will be from the Ontario Dental Hygienists'
Association. Good morning and welcome to the committee.
Ms Pat
Spencer: Good morning. My name is Pat Spencer. I am a
practising dental hygienist and the current president of the
Ontario Dental Hygienists' Association, the ODHA. With me today
is Linda Crawford, our executive director.
As you may be aware, the
ODHA is the voluntary professional association representing the
vast majority of over 6,000 dental hygienists who are currently
registered to practise in Ontario. The ODHA is, I believe, the
sixth-largest health care association in Ontario. Dental hygiene
is a regulated profession. Since 1993, we've had our own
self-governing college, the College of Dental Hygienists of
Ontario.
Before commenting on Bill
159, I'd like to express our appreciation for the opportunity to
appear before this committee and to put our views on Bill 159
before you and on the public record. Even if this bill dies on
the order paper, this review and the dialogue with practitioners
is useful in bringing back a better bill.
Access to and exchange of
health record information is both critical to and commonplace in
the practice of dental hygiene. Dental hygienists are usually the
first health care practitioner a client sees in a dental clinic.
Dental hygienists usually interview the client to complete the
health record as the starting point for dental hygiene assessment
and treatment. The health record then forms the basis for any
subsequent examination and diagnosis conducted by a dentist.
Why, you might ask, would
someone who is removing the plaque on your teeth need to know the
health care status of a client? There are many reasons. If you
have had a recent joint replacement, the possibility of infection
arises due to the bacteria in the mouth that will be released
into the bloodstream as the hardened plaque is broken up and
removed. If you are a cardiac patient or a diabetic, you may be
on a range of medications that contraindicate treatment, or you
may require special precautions. We have to know these sorts of
things before we begin, and so we take a comprehensive medical
history and conduct a comprehensive assessment. We need to know
to provide safe, appropriate care. Accurate and up-to-date health
information and the protection of confidentiality is as crucial
to the dental hygienist-patient relationship as it is to any
other health care practitioner-patient relationship.
We believe that proposed
legislation such as Bill 159 is an important building block in
health reform. It's also demanded by our increasing reliance on
electronically stored and transmitted data, the growing
multidisciplinary approach to health care delivery, the need for
more and better data
to assess health outcomes and the cost-effectiveness of alternate
health care interventions, and demanded by the growth of
privately funded and community-based health care.
Notwithstanding, the ODHA
does have reservations about the bill and its implementation.
Let's begin by addressing what we think is the fundamental need,
and quite frankly, one of the major shortfalls of the bill. We
are concerned that this bill emphasizes access to health records
over the protection of patient privacy. Because Bill 159 would be
paramount over the RHPA, and therefore our own college's
regulations, we're afraid this orientation actually turns back
the clock in terms of privacy protection.
For example, the definition
of "health information custodian" in section 2 is very broad. The
definition includes not only health care practitioners and
service providers, but also the Minister of Health and Long-Term
Care, members of district health councils, Cancer Care Ontario,
researchers, program managers and so on. In our view, there's no
a priori justification for many of these to have general access
to personally identifiable information.
Furthermore, the bill
unnecessarily expands the instances in which personal health
information may be disclosed without that person's consent. For
example, subsection 26(3) permits a health information custodian
that is a health care facility or organization to "use or
disclose the individual's name and address for the purpose of
fundraising activities" without the patient's consent. We object
fundamentally to personal health information being released for
fundraising activities.
We are also concerned that
personally identifiable information could be used and disclosed
to the Ministry of Health and Long-Term Care for planning
purposes, pursuant to section 27(e); for research purposes,
pursuant to section 27(i); or for any third party user. In our
view, the legislation should explicitly state that identifying
health information will not be disclosed if anonymous information
is equally available.
We're concerned that Bill
159 would make our patients under 16 years of age have their
personal health information released without consent. I am
referring specifically to subsection 46(2)(a). Let me give you an
illustration. Whether a person smokes is a piece of vital
information for dental hygienists. Teenagers often don't want
their parents or guardians to know they smoke. I think a
practitioner would be duty bound to tell a patient that the
confidentiality of this kind of information cannot be guaranteed.
That could affect the patient's candour and the level of trust in
the patient-practitioner relationship, thereby detracting from
our ability to provide quality and appropriate care.
1130
We are also concerned about
the broad discretionary powers given to the Minister of Health
and Long-Term Care to extend access to health information and
thereby mute the bill's effectiveness in protecting privacy. For
example, section 30 stipulates that the minister may disclose
personal health information to anyone the minister designates by
regulation. The fact is that the health record is the property of
the patient. In our view, the basic, immutable and overarching
principle should be that no information should be shared beyond
the health care practitioner team without the knowledge and
expressed consent of the patient.
Informed consent should be
at the heart of any privacy legislation, as it is with any
treatment, and as it is with the federal legislation. We like the
formulation in the federal legislation, the Personal Information
Protection and Electronic Documents Act; namely, information
cannot be collected, used or disclosed without consent, and
information can only be collected, used or disclosed for the
purpose for which consent was given. This bill allows for the
collection, use and disclosure of personal health information
without consent in a variety of circumstances. For example,
clause 22(4)(d) allows the collection of personal health
information from a third party without patient consent or even
knowledge.
The ODHA recognizes that
the requirement to obtain case-by-case informed consent before
disclosing historical patient information could be a costly and
time-consuming endeavour. The ODHA suggests the creation of a
standardized consent form specifically for research use. Patients
receiving treatment would be asked to provide consent in advance,
thereby eliminating the time and cost involved in contacting
individual patients retroactively. The patient should also be
provided with the opportunity to decide which information could
be divulged. The form would explicitly state that confidentiality
would always be protected and a time limit-for example, for
research studies over the next five years-would be imposed on
disclosure.
Subsection 20(1) requires
that a health information custodian be appointed, which appears
to be a very good idea on the surface. Dental hygienists already
follow stringent health record management policies and procedures
defined and enforced by our college, the College of Dental
Hygienists of Ontario. That is not an issue here. The issue is
that some of our members operate independently or in small
offices. Many, like me, are in rural or remote areas. Our margins
are the thinnest of the thin. The statutory requirement for the
designation of a custodian will add a substantial administrative
burden, without any offsetting compensation.
We trust, by the way, that
sole practitioners such as myself can designate ourselves as the
custodian. If so, the bill should make it explicit. If not, the
requirement will simply not be sustainable by our practices.
The ODHA supports the
creation of a research ethics review body. We regret, however,
that the review body will not be empowered to review requests for
personally identifiable information made by other parties, such
as the Ministry of Health and Long-Term Care, Cancer Care Ontario
and public hospitals. We suggest that the ethics review body
waive the need for informed patient consent only if the following
criteria are met: (1) the rights and welfare of the patient will
not be adversely affected; and (2) the research could not
practicably be carried out without the waiver or alteration of the consent
requirement.
Part VIII of the bill gives
patients the right of access to, and the right to request
correction of, their personal health information. This is good.
Section 44, however, lists five exemptions, several of which are
troublesome. We believe the right of access and requests to
correct one's own personal health information are an essential
part of privacy protection and should be unrestricted. Therefore,
mandatory exclusions should be avoided.
Furthermore, clauses 44(d)
and (e) allow some personal health information and information
under the custody or control of a class or classes of custodians
to be excluded from this part of the bill by regulation. This
kind of broad administrative discretion should not be
countenanced in this bill. Access to health records and personal
privacy should not be subject to the exercise of political
discretion.
Electronic collection,
storage and transmission of health information increase the risk
of unauthorized use of health records. Because of the increasing
role of electronic collection, storage, retrieval and
transmission of health care data, it is important to be sensitive
to both public perceptions and the likelihood that computerized
abuses of health records will increase. We therefore suggest that
the bill require the electronic storage and transmission of
personal health information to be encrypted.
Mr Chairman, that concludes
our formal statement. We have also made a detailed written
submission to this committee. Thank you for your attention.
The Chair:
Thank you very much. That affords us just under two minutes per
caucus for questioning. We'll start this time with Mrs
McLeod.
Mrs
McLeod: Thank you very much. It was a very thorough
presentation. I appreciate your drawing a number of the concerns
to our attention that we're certainly hearing about the
legislation that we think need to be addressed.
One of the issues you've
touched on that we haven't heard a lot about is the added
administrative responsibilities of being the designated health
information custodian. I am assuming, although maybe we do have
to clarify it in the legislation, that where you are a solo
practitioner you can designate yourself as that health
information custodian. Assuming that's the case, could you say a
little bit more about the ways in which your practices as that
health information custodian would have to change from what they
are now and what the costs would therefore be to you?
Ms
Spencer: I work in long-term care. At the present time
when I treat a patient, I keep a copy, leave a copy with the
facility and send a copy to the contact, whether it be the public
trustee or the family or friends-whoever is the designated
contact. I am then responsible for the disbursement of that
information. The cost of ensuring the transportation, the courier
to the contact person would be one. It has not been defined
whether I would have to set up a whole computerized system if
it's going to be electronically stored. Would I have to make
arrangements with a central agency? Would I actually have to pay
for access to the long-term-care storage? There are so many
unanswered questions in that respect.
Mrs
McLeod: Is one of your concerns that there could be
future requirements, for example, to store records
electronically, without there being compensation for what would
be obvious costs in setting that up?
Ms
Spencer: There may be licensing costs to access any
number of centres where the data might be stored. We don't know
if it's going to be centrally stored. There was some discussion
on trying to decide even who would be holding the electronic
information.
Mr Wood:
I'd like to take you back to the part of the submission where you
spoke about data being made available for research purposes
without consent. You've said, in effect, where it can't be done;
otherwise, you think that might permitted under basically firm
guidelines. That's what I took from your submission. Did I
correctly pick up on what you were saying?
1140
Ms
Spencer: We would prefer that where it can be done
anonymously it would be done that way, or if it could be
disclosed so that you can get consent ahead of time. Am I
understanding your question correctly?
Mr Wood:
What I thought you were saying is you feel there are some cases
where it may be necessary for the purposes of research to make
data available without the consent of the person. That's what I
thought you were saying.
Ms
Spencer: We prefer that it be done with consent but that
there would be time limits. The individuals might be more
amenable to giving their consent if they knew there was going to
be a time stipulation and that they would have input into what
information would be released.
Mr Wood:
What about the oversight of that? You're familiar of course with
the ethics committees that are proposed?
Ms
Spencer: Somewhat. I'm not sure; I'm not an
authority.
Mr Wood:
OK, let me try and make this very simple. There's a proposal for
some oversight committees. My question is this: should the
oversight committees have the final say or should the final
sign-off be someone like, for example, a privacy commissioner?
Should there be an identified public official who has final
sign-off or do you think it should be the committees themselves
that have final sign-off?
Ms
Spencer: From my understanding at the present time, as
long as there was a review process to protect the information of
the patient, whatever form that might take.
Mr Wood:
That's really my question. Do you think that the committees
themselves should have the final sign-off, or should there be
some public official who has the final sign-off on a research
project?
Ms
Spencer: That's not something that we have actually
explored. I would have to do some research and come back to you
on that.
Mr Wood: Feel free to send a
memo to the committee and a memo to the minister once you've had
a chance to think over your thoughts on that. Thanks.
The Chair:
Thank you very much for coming before us here today.
Ms
Spencer: Thank you.
ASSOCIATION FOR HEALTHCARE PHILANTHROPY
CANADA
The Chair:
Committee members we have another group which is not in your
schedule. Apparently there was some difference of opinion between
the clerk's office and the presenters, but it seems we do have
some time before noon. It's the Association for Healthcare
Philanthropy. Perhaps they can come forward to the witness table,
please. Welcome to the committee.
Mr Michael
Farrell: Mr Chairman, honourable members, thank you for
accommodating us. We very much appreciate that. My name is
Michael Farrell, I'm the executive director of the Hamilton
Health Sciences Foundation, but I'm the chair of the Association
for Healthcare Philanthropy Canada. To introduce the delegation
that is with me: I have Leslie Sher from the Greater Niagara
General Hospital Foundation, Sally Dobbie from the Trillium
Health Centre Foundation, Gina Rosen from Markham-Stouffville
Hospital Foundation. To my right, Anne Randall, who is the
president of the St Joseph's Health Care Centre Foundation in
Toronto, and Carol Chabot from the University Health Network
Foundation in Toronto.
We are here, first of all,
on behalf of the Association for Healthcare Philanthropy and we
bring this delegation, more than anything, so that you'll
understand that we're represented province-wide. We have 400
members in Canada-200 in Ontario-and we have members representing
the fundraising offices in virtually every major health care
facility in the province.
We are here to endorse both
the letter and spirit of Bill 159. It recognizes the importance
of grateful patients to the health care system, and we are in
support of that.
By way of background, you
should be aware that in Ontario virtually every health care
provider in the province is currently following up with grateful
patients and offering them a chance to participate. We do this
with utmost sensitivity and with respect of confidentiality. I
have attached some documents at the back of this which are the
standard of professional behaviour that our organization adheres
to, a donor bill of rights, and general guidelines for the type
of grateful patient programs that may run across the province,
and in fact across North America in this case.
Grateful patient programs
offer an opportunity for individuals whose lives and good health
have been preserved or enhanced through the use of the health
care system to contribute in support of the continued delivery of
these services. We have taken great care to respect their
privacy.
I want to talk a little bit
about health care and philanthropy in Ontario. As you know, we
are in the midst of probably the most significant reinvention, if
you like, or restructuring of health care in recent history. You
also know that 30% to 50% of the capital project costs are costs
that rest with communities and with hospitals. Much of the work
being done to generate that sort of revenue is being done by the
hospital foundations and the fundraising offices across the
province. In a study done in the greater Toronto area in the year
2000, they identified in the next five years some campaign totals
in excess of $1.6 billion. We would expect that sort of number
would be double across the province. I can't nail that down
exactly, but certainly it would be that order of magnitude.
Philanthropy's influence on
the health care system goes way beyond the bricks and mortar. I
think the importance piece to understand is that philanthropy now
has found its way. Whether its partnerships with the faculties of
health sciences at the various universities where we have
fellowships or shares in some of the smaller community hospitals
and in community hospitals across the province, we're seeing much
of the innovation in the health care system. This is the result
of philanthropy and people in the community who want to
participate in their health care system and have done that and
have shown that sort of leadership.
There's an old saying in
fundraising that goes something to the effect of, "Even if you
don't need the money, you ought to do this for the dialogue," and
the communications that come out of development offices, whether
they be part of the hospital or part of the foundation, put the
best foot forward for our health care system, explain the health
care system and explain opportunities to these individuals. Quite
frankly, this may be the time they listen most to us: to explain
the health care system, how they can participate, their
importance.
I think that when we come
to the very core of the matter-our two surveys that have been
done, one in Hamilton was done at the hospital that I was in
prior to merger and was repeated again at the North York
General-the point here is that 80% to 82% of the individuals who
are donors identify themselves as either grateful patients or
immediate family of grateful patients. I think that statistic, in
and of itself, is significant and that our ability to communicate
with former patients of the health care system is absolutely
critical. It's one of the linchpins of the work that we do in the
community.
Now we get to the whole
issue of notification. We're addressing section 26(3), "Exception
re fundraising," and it's (2) where the act tries to define what
notification is. First and foremost, we agree completely with the
concept of notification; in fact, it may come as a shock to you
that we don't want to contact people who don't want to hear from
us either. It's expensive. We would rather not send letters or
contact in any way the folks who don't want to hear from us.
Being aware of this, we have wrestled with this for several
years: how will we do it?
The ethical dilemma that comes forward is that
some of our hospitals even considered trying to have people sign
off on their own at the hospital just because it would avoid that
mailing to someone who may not want to hear from us. It creates a
very serious ethical problem. For anyone entering our health care
system who is ill or sick or somehow has their decision-making
weakened, it is an inappropriate time to ask them to make a
decision about participating in any way with the hospital. It's
just not appropriate.
The concept of trying to do
so at discharge is difficult, because in hospitals you discharge
from all over the place. You discharge at different points all
through the hospital. It's not that easy a piece to deal with.
Then there's the issue of outpatients, as well, that is
challenging.
All these things
considered, we have first considered some of the things that
certainly by practice we think ought to be considered as part of
notification. That could include signage in the emergency and
admitting areas of the hospitals. Again, because of the way
people enter the hospital, no one of these will ever be enough,
but the availability of an opt-out card and postage-paid return
envelope in emergency and admitting areas-the importance of the
attachment of a postage-paid envelope is that, even in this
situation, we would rather these folks are not confronted with
having to hand that or make known that decision to someone that
they are opting out. It's something that they can do in the
privacy of their own home or send home with a loved one.
1150
Further, and more
significantly, the inclusion of an opt-out card and postage-paid
self-addressed envelope with the first correspondence to
potential grateful patient donors: herein lies the meat of what
we would consider the recommendation around notification. AHP
Canada recommends, for the purposes of this legislation, that a
hospital or its affiliated foundation should mail its
solicitation correspondence to patients no sooner than one month
after either the discharge of an in-patient or visit of an
outpatient.
Let me talk for a second
about that concept of one month. You will see in some of our
guidelines and in the general guidelines that it can be as much
as three months. These are international guidelines and, quite
frankly, in the United States model they are usually suggesting
you don't do this until all the billing has cleared. That has
driven the three-month period in our general piece. We feel that
the ideal time is approximately six weeks, because that allows
the patient to have probably regained their strength and made
them in a better position to make any choice. They're outside of
the health care sphere and would be in better shape. We believe
they ought not to be at all contacted before one month. We didn't
just pick one month; there was some rationale there. After one
month, there is some stability. It ought not to be before
that.
Further, we recommend that
this first correspondence must include a card and self-addressed,
postage-paid return envelope that allows the individual to have
their name removed from hospital/foundation solicitation programs
and that this card be considered written notice, as described in
subsection 26(3), "Exception re fundraising," paragraph 2. The
act currently reads that there ought to be written notification.
What we're saying is it can be cost-prohibitive for us to send a
letter asking not to send a letter. What we're suggesting is that
in that first correspondence there be a postage-paid opt-out card
that the individual could respond to us to have their name
removed.
I would further say that if
you go into some of the practice, we in daily practice encourage
people to opt out if they don't want to correspond with us. I
would go back to this point: fundraising is, by its very nature,
a voluntary endeavour, and we have no intention to foist
ourselves upon people. It's an interesting discussion when we
talk about philanthropy in its purest sense that quite often you
get people talking about the idea of arm-twisting or things of
that nature, and it's just so far from what we do in our daily
jobs. What we do is we encounter people who are of goodwill, who
have come forward to make a difference. Those are the folks that
we want to talk to; those are the folks that we continue to talk
to. We believe that with only slight changes to the piece
regarding notification, we can achieve that end.
We are here to answer
questions. I would again thank the committee for their
indulgence.
The Chair:
Excellent. Mr Wood, we'll start with you. We have about two and a
half minutes per caucus.
Mr Wood: I
thought it was a very clear and helpful presentation. It was so
clear and helpful, I don't have any questions. But thank you very
much for coming.
Mrs
McLeod: Very quickly one, and then my colleague has a
question. I appreciate the issue around notification. I've had
that raised by our own hospital foundation with the same
sensitivity that you've expressed today. Do you think it's
appropriate, though, to leave the provision to the regulation,
which is allowed for in the legislation, rather than be that
specific in the legislation itself, or should it be in the
bill?
Mr
Farrell: I'm sorry. I didn't quite hear you.
Mrs
McLeod: The notification issue: should it be in the
legislation, or is it sufficient to leave it up to the regulation
process?
Mr
Farrell: It would be fine with regulations. We would
take the direction from the committee. I just think that it needs
to be defined.
Mrs
Pupatello: Thanks for your presentation. I appreciate
the stress you're under these days to fundraise in your sector
too. In essence, you're suggesting that there would be a similar
to a negative-option billing issue in that where you need to have
consent in order to send people a letter for fundraising, you
need to have the net cast, and if the people don't want to, then
they need to report back to you. That's the condition you'd like
to be able to fundraise in?
Mr
Farrell: Effectively, yes. We can't find a way to do it
otherwise.
Mrs Pupatello: Because it's so
inappropriate in emergency situations etc.
Mr
Farrell: Any time. When someone is in the hospital, even
when they're near discharge, as people are leaving the hospital,
I don't think it's a fair time to ask them to make a decision.
They're still weakened and ill. We have wrestled with that. I
would just go back to the point again that we really don't want
to mail to people who don't want to hear from us, but without
being able to cast the net, we don't know of any other way to
intervene, and we hoped that by this-
Mrs
Pupatello: But you would likely acknowledge that once
you are sending out a general mailing to everyone who has come
through those doors, that envelope can land in a home where
others in the home aren't aware that this individual accessed
health services though the hospital?
Mr
Farrell: For the most part, yes, we can't say that
couldn't happen, but you'll see that there are extensive
exclusions almost all of the time. We ask the hospital before we
get the records to exclude-and you'll see a general list of the
type of exclusions that might be there.
Mrs
Pupatello: Yes, I saw that. Name some for me.
Mr
Farrell: Police admissions, abortion, psychiatric
admission, and the list goes on. Anything that we would
consider-
Ms Anne
Randall: Usually under a certain age.
Mrs
Pupatello: So those are at your discretion, who have
made that list, for what you feel is appropriate?
Mr
Farrell: What we have done is, and it comes back to the
same point, we have tried as generally as possible-in each
organization right now, none of us wants to mail to those
individuals. We also allow individual caregivers to exclude
people. We don't see what's happened, so that there's the
opportunity for a caregiver at any point to stop that process.
Quite frankly, that happens right now in a different manner at
each one of our organizations, but we get a very limited amount
of information.
Mrs
Pupatello: It was interesting how this whole thing sort
of grew. It may not be a matter that people mind that this
information is immediately passed over to the foundation, but
that there really is no law governing the fact that you can or
cannot. If it's generally well known that you can, it's
interesting that you are a separate incorporated body. It is not
within the confines of the same corporation. So you are handing
information over outside of the corporation and into the
corporation of the foundation, because in every case your
foundation is a wholly different corporation. Correct?
Mr
Farrell: That's correct. It's not always done that way.
In many cases the hospital is generating the letter and the only
things that will come to the foundation are the positive
responses, so it operates differently. In some cases the
foundation is in fact generating those letters; in some cases
they're being generated by the hospital.
Ms
Randall: I would suggest they come from the hospital
more times. There's a larger percentage that do it that way.
That's the way we do it in ours. We don't ever see those names.
The only thing we get is the donations on the foundation
side.
Ms Lankin:
I'm sorry; I was outside when you made your presentation, but I
just read through it. My experience, in fact, has been the
opposite. In two or three circumstances with different hospitals
with myself and family members, the letters have come from the
foundation. I wasn't unwilling to receive the information, but I
found myself surprised that information had been handed out of
the hospital corporation and over.
Perhaps we should be
looking at some restrictions around this that don't simply exempt
the passing of that information, but that require the hospital to
take the first step and get consent and then pass it over. How
that consent is done-I understand Mrs Pupatello's concern that
any kind of correspondence to the person's home could inform
others, but that's true of billings. If there are outstanding
billings from your semi-private room that your insurance hasn't
covered yet, that correspondence is going to come to your home
address, so I'm less worried about a letter coming from the
hospital that includes the kind of consent card to pass the name
over.
If that were the case and
that were required so that foundations were not able to receive
individual patients' names unless they had agreed to have their
names passed over, would you have a concern with that?
Mr
Farrell: Part of the discussion we had was trying to
find a place and a way to get the consent. What happens is, if
anyone is asked to do that in a hospital environment, it creates
a real dilemma. We would have done that, but what I was
explaining before was that we don't want to mail to people who
don't want to hear from us.
Ms Lankin:
I know, but given your suggestion that the letter go out within a
month, for example, what if the rule was it has to be the
hospital that sends it, not the foundation?
Mr
Farrell: That would not be a problem. It's interesting
you've mentioned the absence of legislation. I know that in my
situation we have a signed confidentiality agreement with the
hospital and have declared what we get and how. Each individual
who would even work with that signs it. We have done that in the
absence of legislation. As I say, we support this in that it
clears that up and will define some of that. I don't believe
there would be any serious resistance from us.
Ms Sally
Dobbie: I'd also mention that at Trillium Health Centre
that's exactly how it's handled. The foundation actually never
sees the name until that person is a donor. The hospital
information department and the health records department are
actually very interested in all the exclusions before those lists
go to our direct mail house. Should a person choose to make a
donation, then that name comes in to the foundation-
Ms Lankin:
I'm sorry. Did you say the hospital sends those names to a direct
mail house?
Ms Dobbie:
That's right. It never passes through the foundation. We don't
actually get the patient records.
Ms Lankin: Is there not a
problem with that information going to a direct mail house?
There's a third party who is receiving a list of names of people
who were patients at this hospital.
Ms Dobbie:
But there's a contract between the hospital and the direct mail
house. They work closely together so they know those lists are
confidential, and it keeps it removed from the foundation's
records. In other words, we don't have the patient database in
our files. That's the way we handle the confidentiality
issue.
Interjection.
The Chair:
We're over time already.
Mrs
Pupatello: I've got a really important question.
The Chair:
Perhaps you could ask it after, in deference to the other-
Mrs
Pupatello: It's important that it be on the record.
The Chair:
Very quickly.
Mrs
Pupatello: I just want to know if there's a restriction
anywhere to selling lists. Can you include that in an answer
somewhere?
Mr
Farrell: We absolutely do not trade and sell lists. It's
a practice that doesn't exist in the health care sector.
Mrs
Pupatello: But the mail house does.
Mr
Farrell: No, those lists are seeded with bogus names all
through them, and there are security issues that go through that.
Any mail house that had ever done that-the government, I'm sure,
must use mail houses on occasion to do this sort of thing.
Mrs
Pupatello: More and more.
Mr
Farrell: Anyone who would ever breach that would put
themselves out of business. It would be illegal. They would be
subject to all sorts of other penalties outside of what we've
done.
The Chair:
Thank you very much for bringing a different perspective to the
hearing this morning.
With that, we stand
recessed until 1 o'clock.
The committee recessed
from 1203 to 1306.
ONTARIO PSYCHOLOGICAL ASSOCIATION
The Chair:
Good afternoon. I call the committee back to order. Our first
presentation this afternoon will be from the Ontario
Psychological Association. Good afternoon and welcome to the
committee.
Dr Christian
Keresztes: I'm Christian Keresztes. I'm a psychologist
and chair of the ethics and policy committee of the Ontario
Psychological Association. The Ontario Psychological Association
is a voluntary organization that represents psychological
practitioners in Ontario. Its mission is to be an advocate for
issues of importance to both the public and its membership.
The association has
followed the development of this legislation with great interest,
participating in previous requests for feedback both through a
written brief and by attending meetings to discuss the
legislation. The association's current response has been
developed primarily by its ethics and policy committee. This
committee is responsible for providing ethical guidance and
assistance to members and for preparing ethical and other policy
statements pertinent to psychological practice.
Psychological practitioners
are health professionals, regulated by provincial statute and
governed by the College of Psychologists of Ontario. In the
course of their work, psychologists both produce and make use of
extensive personal health information. For instance, we conduct
and record the results of psychological assessments of
personality and of the social-emotional, behavioural,
intellectual and neurospsychological functioning of children,
adults and families in a variety of settings, including health
facilities, social services, schools, industry and corrections.
We provide mental health counselling and treatment to citizens of
all ages. These services often involve, as an integral part of
the therapeutic process, the sharing and recording of an
individual's most private and sensitive feelings, thoughts and
life events. We access physical and mental health information
collected and recorded by others to aid in our assessment and
service activities. We access physical and mental health
information to research the causes and patterns of health
problems in the interests of knowing how to prevent and
continuously improve the treatment of those problems.
OPA welcomes Bill 159. OPA
welcomes the legislation, recognizes the need for it, and
endorses its intent and comprehensiveness. In an era of growing
concern about privacy, occasioned partly by the ease of
electronic data interchange, the protections intended by the act
can contribute to maintaining public trust in government and in
our health care system.
OPA welcomes, in
particular, the following aspects of Bill 159: the codification
of limitations on the collection and disclosure of personal
health information; the codification of individuals' right of
access to their own health information; the codification of the
responsibilities of health information custodians and information
managers, regardless of whether the setting is a sole
practitioner's office or a large organization; and the
responsiveness to previous consultations.
One example of this, and of
great importance to psychology, is the incorporation of a
suggestion made by OPA at one of the consultations; namely, the
right to refuse access to raw data from psychological tests. This
will ensure the continued utility of these tools for assessment
and protection of individuals from harm due to misinterpretation
of raw data by persons not trained to interpret such data.
In spite of OPA's opinion
that the act is needed and incorporates much that will be helpful
to the protection of personal privacy, the association has some
very serious concerns about Bill 159.
The first of these is the
removal of the lockbox provision. Given that different types of
health information have different levels of sensitivity, the
implementation of a lockbox provision would be helpful. For
instance, patients would have more direct control over their
privacy if they had the right to limit the transmission of
selected psychological and psychiatric information to other health care providers.
Such a provision was included in previous versions of the act. It
is our strong recommendation that it be put back into the
act.
Second, there is a lack of
explicitness about the need-to-know criterion. An explicit
statement clarifying the principle of need to know and its
application would strengthen the legislation. Application of this
criterion would ensure that personal health information
custodians and managers include this concept in policies and
procedures related to the sharing of information in an office or
health facility. For example, there should be graded access to
the contents of electronic health records, so that potentially
sensitive physical or mental health information should not show
up on a receptionist's screen. In addition, policies and
procedures should ensure that employees, contractors and
consultants understand their responsibility not to seek or search
for information they do not have a legitimate need to know. Also,
the implementation of health information systems and networks
must guarantee the control of access to personal health
information in accordance with defined need-to-know criteria.
Subsection 21(3) stipulates
the nature and extent of the information to be collected, used or
disclosed that may be identified when seeking consent. OPA
believes that such information should be conveyed in all
situations of obtaining consent for disclosure.
Third, there is the implied
definition of the record as a single entity. The current
definition of a record, although comprehensive, can be construed
as being a unitary entity, suggesting that a disclosure means
disclosure of all the information in a record. As such, instead
of looking for relevant information, the entire record may be
sought or mandated, much of which may not be relevant to the
purpose. This is particularly problematic when information is
sought for investigative purposes, such as warrants, or for
proceedings. Often, a warrant does not provide any option to
limit disclosure to relevant information. We believe the
provision of warrants without true judicial oversight about the
nature, level and relevance of the health information being
sought promotes fishing expeditions, unwarranted invasions of
privacy and potential harm to the individual.
Recent changes to the Child
and Family Services Act regarding tele-warrants have already
raised similar issues for us. Access to an adolescent's most
private thoughts and feelings, when unwarranted, can be
devastating to the adolescent's treatment process and to his or
her future willingness to engage in mental health treatment.
One recommendation that
might help offset this problem is to make it clear in the act's
definition of a "record," that a record includes the concept of a
part of a record. This latter phrase is used in subsections 34(9)
and 48(5), but is not used consistently elsewhere. Using it in
the definition would offset the need to use the phrase throughout
the act.
A second recommendation is
that the act establish special protections, such as when
obtaining a warrant, for certain types of health information; for
example, information in a lockbox or highly sensitive information
like psychotherapy notes. In this latter case, OPA notes that the
recent US regulations to the Health Insurance Portability and
Accountability Act established special protections for
psychotherapy session notes. Such protection does not include
factual information about diagnoses, medication and attendance at
sessions, but it does include protection of notes about the
individual's feelings and thoughts.
Fourth, there are profuse
and unclear exceptions to the need for consent. There are a large
number of permitted uses which allow for disclosure without
consent and which we believe are a matter of concern to
psychologists as health service providers and as citizens: the
whole issue of directed disclosures which gives the Minister of
Health considerable power to compel disclosure; apparent
exemptions for insurance companies and WSIB; unclear exemptions
for employment and labour relations purposes. The possibility of
employer access to health records is particularly worrisome.
The presence of such a
large number of exceptions in part VI undermines the intent and
credibility of the act. In many of the exceptions, we believe
there needs to be someone with independent judicial authority who
can establish and review whether a disclosure for a warrant,
proceeding or court production is relevant and who can remove
what is not relevant.
When personal health
information is released into a proceeding without consent, the
act, in subsection 34(4), provides for a process of judicial
review, unless "(d) the proceeding is one in which the
competency, conduct, actions, licensing or registration of a
person are in issue." We believe this exception is unnecessarily
and dangerously broad. All proceedings appear to be included.
What proceeding is not a proceeding about one's conduct or
actions? It is not hyperbole to consider the absurd example that
a parking ticket could be argued as a proceeding to warrant
disclosure of a health record without consent.
It is not clear how the
provisions of Bill 159 apply to insurance companies, employers
and workers' compensation boards. Why should these organizations
be treated differently from others? Clarification is needed
regarding the protection of personal health information by and
from these organizations.
Fifth, there is an onerous
burden on health care research. It is our strong opinion that
section 32 has the potential to create a structure that would
make even very simple research projects extremely difficult to
carry out, placing unnecessary obstacles in the path of research
undertaken to improve direct health care and the health care
system. Under the act research ethics boards, which presently
exist in universities, will have a legal obligation to enforce
what have until now been consensually established guidelines,
namely the federal Tri-Council guidelines for ethics in research.
This is a significant and novel shift in function for university
research ethics boards, and they might not be equipped to
accommodate the volume
of requests that the legislation would be expected to generate.
The act apparently does not allow for institutions that are
health information custodians to create their own research ethics
boards for this purpose.
The act also goes beyond
the Tri-Council guidelines in requiring written consent for
research. Under the Tri-Council guidelines, oral consent is
acceptable under some circumstances, such as in respecting
cultural differences, as perhaps among First Nations people.
It is our belief that the
current research provisions of the Mental Health Act would
provide a much more realistic and reasonable structure for the
use of personal health information for research purposes.
We are aware that the
possibility of linking health information databases for research
purposes was not addressed in the Mental Health Act. This is a
new concern in light of recent technologies and may have led to
many of the unwieldy provisions of Bill 159. We appreciate the
opportunities, complexities and challenges that these new
technologies bring. However, we believe the entire section on
research needs rethinking. To this end, it might be helpful to
incorporate concepts that differentiate between forms of health
information, such as personally identifiable information,
non-identifiable information and hidden identity information.
Such a differentiation might enable access to information on
linked databases without undue risk of violations of privacy. The
researcher who accesses hidden identity information would never
be aware of the personal identity of the persons whose health
care information is being accessed. There would be strict control
over the linkage codes, and there could be severe penalties for
those who try to break or access the codes without legitimate
authority to do so.
Too many details are left
to the later writing of regulations. In its present form, the act
leaves virtually all operation and oversight to be resolved
through regulations, which generally do not go through the same
type of consultation process as legislation. The drafting of
regulations will determine whether the intent of the act is
achieved or subverted. Accordingly, OPA requests that the
regulations, given their importance, should undergo the same kind
of extensive public consultation process as is given to the draft
act.
Also, there is use of
language that is inconsistent with other legislation and court
decisions. Section 33 deals with the disclosure of personal
health information related to risks. The criterion for disclosure
is "if the custodian believes on reasonable grounds that the risk
is significant." This is a more liberal test than set out by the
Supreme Court of Canada in Smith v Jones, 1999, which upheld in
large measure the well-established Tarasoff precedent on
requiring disclosure only if risk of harm is "imminent and
serious." It may be better to stay with the stricter Tarasoff
criterion.
In its present form, clause
36(1)(g) gives permission to health care providers to report past
criminal acts of persons receiving services. In most
circumstances, ethical codes of regulated health professions
would regard such reporting as a breach of confidentiality.
1320
The use of the phrase "on
his or her own" in section 46(2)(b) is confusing. Does this mean
all individual therapy regardless of age or is it referring to
the provisions of section 28 of the Child and Family Services
Act? We suspect the latter and suggest that reference to the
specific section in the Child and Family Services Act and similar
language to that section of that act be used.
The Chair:
Thank you very much, and that does give us about three minutes
for questions. This time it will be the turn of the
government.
Mr Wood:
On the question of research, some have suggested there should be
a sign-off by some public official such as, say, the Information
and Privacy Commissioner. So the ethics committees presumably
would do their work and that would then go to some public
official who then, in effect, would set the policy and make sure
the policy has been implemented. Do you see that as a good idea,
a bad idea?
Dr
Keresztes: In principle it's a good idea. One of our
concerns is that university research ethics boards may not be
equipped to handle the volume of requests that might be generated
by the act. An alternative might be to allow other institutions
to have research ethics boards, non-university-affiliated
institutions, which would then do their work, although the
problem they would face is they may not have the requisite skills
and knowledge to make a proper determination of whether a
proposal meets the requirements of the act.
Mr Wood:
Is this a situation where these other bodies cannot have these
boards or they simply don't have them?
Dr
Keresztes: Other bodies do have such boards. It is not
clear under the terms of the act as it stands right now whether
these boards would be allowed or how they would be recognized
under the act.
Mr Wood:
Let me return to the question of lockbox for a moment. An
alternative model to having a lockbox is simply to say, "We're
going to have the record stand as it is and you either authorize
disclosure or you don't"; in other words, an all-or-nothing
approach. The concern that we've heard expressed is where you can
take some things out of the record and destroy its clinical
integrity.
Dr
Keresztes: That's a very difficult balancing act, but
for mental health information and psychiatry and psychology it
would be very problematic if there was complete access to all of
that information, psychotherapy notes being a very good example.
But there may be other kinds of information as well. It's
understandable that there's no universal agreement about what
sensitivity is, and that's a problem.
Mr Wood:
It would seem to me that if you had incomplete notes from therapy
that's been offered, those notes are really not very helpful, are
they?
Dr
Keresztes: Usually psychotherapy notes are not released
or made public. The psychotherapist keeps those notes for himself
or herself and they are not usually what's requested, although
sometimes on fishing expeditions people do go looking for
them.
Mr Wood: If you were reviewing
what a psychotherapist had done for someone and had only part of
the notes, you couldn't give an opinion as to whether that
therapy was well-founded or poorly founded, could you?
Dr
Keresztes: I would have to consider further the range of
information the therapist may keep in notes, and that may be
highly variable. The notes are sort of a running record for the
therapist to understand what's going on and will not have
complete details. So those are best not interpreted out of
context; that is, outside of the presence of the therapist.
The Chair:
Thank you very much for taking the time to come before us here
today.
CANADIAN ASSOCIATION OF CHAIN DRUG STORES
The Chair:
Our next presentation will be from the Canadian Association of
Chain Drug Stores. Good afternoon and welcome to the
committee.
Ms Deb
Saltmarche: Good afternoon, Mr Chairman and committee
members. Thank you for allowing me the opportunity to present to
you this afternoon.
The Canadian Association of
Chain Drug Stores was established in 1995. We're a voluntary,
not-for-profit national association representing 18 retail chain
drugstores across Canada; 13 of our members have stores in
Ontario. Our members are major stakeholders in the Canadian
retail and health care fields and fill over 53% of all
prescriptions in Canada.
Our work includes the
promotion of the pharmacist as a primary health care provider and
ensuring the viability of chain drugstores. Representing
pharmacists as primary health care providers, we have a
significant interest in the proposed Bill 159. We have previously
submitted a brief on this subject and we're pleased with the
response to issues that we have previously presented; for
example, the removal of the lockbox provision, which we feel
could be detrimental to the provision of pharmaceutical care.
CACDS firmly supports the
principle for ensuring the security and confidentiality of health
information and the need for legislation to achieve this.
However, we would like clarification on the following sections of
Bill 159.
With respect to section
12(9), CACDS interprets the legislation to indicate that Bill 159
would not preclude other health care practitioners from
disclosing all information necessary to pharmacists to allow them
to fulfill their roles as primary health care providers. This
role includes but is not restricted to provision of patient care,
reimbursement of drug claims, ensuring that patient claims meet
criteria for coverage under specific plans and compensation of
pharmacists' services.
We would like to ensure
that the ability to collect personal health information expressly
permitted by a specific law or necessary for a lawful purpose
related to a function or activity of the custodian not be
adversely affected by the interpretation of what is considered
the necessary amount of information. We'd like to receive
direction on whether our interpretation is correct, and if not,
we'd like to see the legislation clarified to this effect.
With respect to section 22,
which addresses the collection, use and disclosure of personal
health information, we'd like to receive clarification as to how
this informed consent may be obtained.
We refer to the recent
experience in Manitoba where legislation was introduced a couple
of years ago. It was stated in the regulations that informed
consent in a pharmacy could be achieved by the posting of a sign
in the pharmacy which states that the pharmacy staff will
collect, use and disclose information from consumers for the
purpose of providing health care services. We would like
clarification as to whether a similar method for obtaining
consent would be sufficient to satisfy the requirements of the
legislation in this respect.
The next area I'd like to
address is the operational roles of the various players in the
chain drug industry under the legislation. Under section 2, a
health information custodian is defined as "a person ... who has
custody or control of personal health information." By this
definition, we interpret that a chain head office is not a health
information custodian, as the head office has an operational role
in ensuring that its stores comply with the legislation but it is
not the custodian of the data, as the data resides at store
level. Further, we interpret that all pharmacists are health
information custodians and that the pharmacy manager-owner of
independent stores has an additional responsibility in ensuring
the legislation is complied with. We further interpret the role
of an operator to include a pharmacy manager, an owner or a
franchisee, and not the head office.
With this understanding, we
further conclude that in a mass merchandiser such as Wal-Mart or
a supermarket with a pharmacy such as Loblaws, only those
employees under the direct supervision of the pharmacist would be
"performing duties for or on behalf of the custodian."
Further, we interpret the
role of the head office IT department or help desk as that of an
information manager. These IT departments may or may not have
access to store-level data, dependent on individual chain
setup.
Following implementation of
the legislation in Manitoba, it was agreed that an agreement
between the pharmacy operator and the IT department would allow
access to view and provide related services to pharmacists
relating to use of health information data.
1330
With respect to agreements
with information managers, we see an administrative burden being
caused on the pharmacists by the implication that we see in the
legislation that each health care custodian would have to sign an
agreement with each IT manager. There may be many pharmacists and
many health care custodians in one location. The health care
custodians may vary, for example, with relief pharmacists, and
the signing of individual agreements between all pharmacists for
all locations within which they work and the IT manager is an
unrealistic administrative burden.
Under the current legislation, we would like to
receive clarification as to whether it would be sufficient for
the pharmacist-operator to sign one agreement with the IT manager
to cover all its health information custodians at one
location.
Again, on an operational
level, we would like clarification on the role of pharmacy
district managers. District managers are employed by head
offices, not by health care custodians; however, they do have
access to the dispensary to perform operational functions. Is the
district manager considered to be in the service of the
pharmacist-operator and therefore covered by the legislation as
it stands? If not, this issue was addressed in Manitoba by
requiring the district manager to sign a confidentiality
agreement with the pharmacist-operator. We would like to clarify
whether this approach would be adequate in Ontario and in the
spirit of Bill 159.
With respect to subsection
18(1), which states, "a health information custodian ... shall
take reasonable steps to establish and maintain administrative,
technical and physical safeguards and practices," again relating
back to implementation of the bill in Manitoba, a procedure is in
place in many large stores whereby the patient drops off a
prescription and then asks to be called over the loud speaker
when the prescription is ready. We would like clarification in
this respect, because in Manitoba it was deemed that was an
inappropriate use of health information and that practice was
prohibited.
With respect to subsection
24(2), which states that the health information custodian should
take "steps that are reasonable in the circumstances to ensure
that the information is accurate, complete and not misleading":
pharmacists regularly collect information from a variety of
sources, including, but not limited to, consumers, caregivers,
long-term-care facility staff, and other health care providers.
CACDS interprets that "steps that are reasonable" would cover
collection of data from all necessary individuals while relying
on those individuals to meet the requirements when they disclose
the data. We would like to receive clarification on this
interpretation.
With respect to subsection
12(5), which states, "to the extent reasonably possible, a health
information custodian who collects, uses or discloses personal
health information relating to an individual shall do so in a
manner that conceals the identity of the individual," we would
like clarification in two respects operationally to that section
of the legislation.
First, requiring
segregation of patient name from a patient file at the store
level would not be feasible in the process of providing care to
consumers. Second, claims adjudication protocols currently
require that patient name is sent along with patient ID for
payment of a claim.
Third party adjudicators
have access to store pharmacies in order to conduct audits. Third
party adjudicators are not employed by the pharmacy custodian;
however, they do provide services for the pharmacy custodian.
Again, we would like clarification as to whether third party
adjudicators, under the legislation as it stands, would have
access to the pharmacy to conduct audits.
I would like to thank you
for the opportunity to comment on the legislation. I would be
pleased to answer any questions you may have.
The Chair:
Thank you very much. That affords us just under three minutes per
caucus. This time we'll begin with the Liberals.
Mrs
McLeod: I'll lead off. I was intrigued with the concerns
you had about the nature of getting consent. I'm not sure that a
sign posted would be considered adequate under Bill 159.
What kinds of concerns
would the pharmacists have about their ability-obviously they are
going to have information disclosed to them in the prescribing,
which we assume has prior consent to file that prescription, but
are there other issues in terms of being able to call back the
doctor to get more information or being able to communicate with
other pharmacists and therefore to disclose that would be onerous
in terms of getting consent from the patient?
Ms
Saltmarche: I think I heard two parts to your question
and one was the consent of the patient. Logistically, to get
written consent for every patient is an administrative burden. It
also puts the pharmacist, who is the front-line health care
practitioner in many cases, in a difficult situation in that
they're explaining the regulations and the bill.
We found the model that was
followed in Manitoba very useful in that a posting of a sign
informing the patients of what their information could be used
for got over that administrative burden, plus the issues at the
pharmacy level in terms of understanding the legislation and
explaining it to patients.
I think the second part of
the question was related to obtaining information from other
health care practitioners. Is that correct?
Mrs
McLeod: Yes.
Ms
Saltmarche: We do have a concern, and it's under
subsection 12(9), that as pharmacists we would be able to collect
all necessary information to provide adequate health care to all
consumers. We're concerned that the legislation may leave up to
the interpretation of an individual health care provider what the
extent of the information needed by another health care provider
is. We would like clarification that if a pharmacist is
requesting health care information that the other health care
provider assumes that is for the use of the health care of the
patient, so that whatever information the pharmacist needs,
whether it be with respect to providing pharmaceutical care or
obtaining reimbursement for a prescription, can be provided under
the legislation.
The Chair:
Ms Lankin?
Ms Lankin:
I actually have no questions. I appreciate the clarity of your
brief. You've put a number of questions to the ministry for
clarification. I think as we see this bill evolve, we have some
expectation that there will be changes. We'll keep your questions
in mind and ensure we try and get clarification for them.
The Chair:
Mr Wood?
Mr Wood: I thought your
presentation was quite clear as well. We appreciate your coming.
I have no questions.
Mr Raminder Gill
(Bramalea-Gore-Malton-Springdale): I have one brief
question, if I may. You mentioned the pharmacist announcing the
name of a person picking up a prescription. In your mind, do you
think it's a breach of some kind of privacy information?
Ms
Saltmarche: No, I don't. I believe that if the patient
asks to be called when a prescription is ready, they've already
given an implied consent that we can do that.
The Chair:
We appreciate your coming before us here today.
CHURCH OF CHRIST, SCIENTIST
The Chair:
Our next presentation will be from the Church of Christ,
Scientist, the Christian Science Church. Good afternoon and
welcome to the committee.
Mr Lyle
Young: It's a pleasure to be with you today. Thank you
very much for taking the time to hear me.
I represent the Church of
Christ, Scientist. You might know the church as the Christian
Science Church. Some of you probably know the Christian Science
Monitor. The Monitor's six Pulitzer prizes I think bespeaks our
church's deep interest in matters of public interest, matters of
societal interest. There would be some 20 or 25 churches of our
particular denomination in Ontario.
A little bit on my
background: I have been a Christian Science practitioner since
1987. A Christian Science practitioner is someone who gives his
or her full time to helping others through prayer. My practice is
in downtown Ottawa. A Christian Science practitioner would help
people with a wide variety of problems, everything from a very
physical illness to mental illness to marital problems to family
problems or work-related problems-problems of any sort. The
prayer that is given is consistent with the Biblical teaching
about praying for others. Every Christian Scientist sees
practising Christian healing as an integral part of practising
Christianity. But Christian Science practitioners are those who
give their full time to helping others through prayer.
In addition to being a
Christian Science practitioner, for the last five years I've
served as the Ontario Committee on Publication. The use of the
word "committee" here dates back to the 19th century when one of
the definitions of the word was "a single person charged with a
responsibility." As the Ontario Christian Science Committee on
Publication, part of my duties would involve public affairs,
representing our church in public forums such as this one.
In that capacity, I serve
on the Ontario Multi-Faith Council on Spiritual and Religious
Care. Some of you might know the OMC. It's the province's most
prominent multi-faith organization, made up of some 33 faith
group members. Basically, it's a transfer payment agency of the
provincial government. The current level of funding is $1.5
million. The OMC has the duty and the responsibility to help
ensure that those in provincial institutions-these would be
hospitals, prisons, homes for the elderly-receive adequate and
appropriate spiritual and religious care.
1340
The last three years, I've
served as secretary-treasurer of the OMC. In that capacity as
well, I sit on the joint committee that's made up of
representatives of the Ministry of Health, the Ministry of
Community and Social Services and the Ministry of Corrections
and, up until just recently, was the chair of that joint
committee. So I bring a fairly broad range of experience in
thinking about matters related to spirituality and to health, not
just from the perspective of our own particular faith group but
from that of 32 other faith groups as well.
My comments on this
particular piece of legislation aren't very lengthy, but it did
seem to me to be important to come in and put those comments on
the record. If you look on page 11 under "Other exceptions,"
you'll see that there are several exceptions to the health
information custodian. The first is an aboriginal healer, the
second is an aboriginal midwife and the third is a person who
treats another person by prayer or spiritual means in accordance
with the tenets of the religion of the person giving the
treatment.
Certainly Christian
Scientists would see that as something that's very welcome,
because then individuals who are practising spiritual healing
don't need to keep records of particular ailments or particular
physical problems that their clients would have told them about.
Christian Science practitioners really have no medical records;
they're there trying to help people from a religious basis.
Although there are strong health benefits to religious practice,
they are not there primarily to help the person in terms of
health. The care provided really is entirely spiritual.
Practitioner billing records really contain no description of the
patient's physical condition. Those records only consist of
information needed for billing purposes such as name, address,
dates of service. Any other information would be wholly religious
in nature.
The care provided by a
Christian Science practitioner is a religious ministry, and in
that sense it's similar to the clergy of other faiths who are
asked to have prayer for healing. In other words, it might be
like an Anglican priest who perhaps was asked by a parishioner,
who maybe has received a diagnosis that's serious, to pray for
the individual. Or you might have a Pentecostal minister who is
asked to pray for an individual who would be sick. So in that
sense, the Christian Science practitioners' religious ministry is
very similar to that.
What I wanted to say simply
was that we're very happy to see this provision in Bill 159. It's
a good protection for Christian Scientists. It's also a good
protection for anyone who, in time of illness, is turning to
another for prayer as a resource to meet that illness, to cope
with or to heal that illness. It may seem like a fairly obvious
provision, but sometimes fairly obvious provisions get left out
of legislation. So we're very happy to see it there.
I think the language was just lifted from the
RHPA, so again we really just wanted to come and put on record
that we're pleased to see it there. In any future drafts of the
legislation, we'd be very pleased to see it there. We are
grateful that it was there. Thank you very much for your
time.
The Chair:
Thank you. That certainly leaves us time for some questions, just
over three minutes per caucus. This time we start with Ms
Lankin.
Ms Lankin:
I have no questions.
Mr Wood: I
have none either. I thought it was very clear, and we appreciate
your comments. It was very helpful.
Mrs
McLeod: I'm not sure that it's a relevant question to
ask you. I appreciate the clarity and your appreciation of the
fact that that inclusion is there for people who are providing
healing through spiritual means. The issue that I have some
questions about, but we haven't had a chance to get at in the
hearing yet, is unregulated practitioners providing different
kinds of therapy in the name of a spiritual kind of healing but
who are not in fact practitioners of a faith community. I'm just
not sure it's a relevant question for you. I don't know how we
catch these kinds of individuals. There are some very
questionable therapies being practised by some unregulated
so-called health professionals that I wish there was a way that
we could capture without seeming to exclude others. If you have
any comment on that, please, but I'm not sure it's going to be a
relevant question for you.
Mr Young:
I'm not sure. I think that one of the nice things about the
wording here is that by saying "the tenets of the religion of the
person giving the treatment," that might imply a certain
established religion, and if so, that may be helpful. But I
recognize the problem for the writers of the legislation. It's
hard to do that.
Mrs
McLeod: It is. Thank you.
The Chair:
Thank you again for coming before us here this afternoon. We
appreciate your bringing your perspective.
JOHN MANUEL
The Chair:
Our next presentation is from Mr John Manuel. Good afternoon, Mr
Manuel. Welcome to the committee.
Mr John
Manuel: It's interesting that the last question from Lyn
McLeod addressed a problem with which I am, regrettably, all too
familiar. Not that I'm casting aspersions on any particular
individuals or groups, but it is regrettable that there is quack
therapy. It unfortunately is that which brings me here today.
I've chosen, because of the
10-minute limitation, not to read my presentation-you can do that
easily yourselves-but rather to summarize it, to add perhaps a
few personal comments, and to then focus on the particular
suggestion that I'm making, which is really, in my mind, fairly
simple.
First of all, I should
introduce myself. My name is John Manuel. I have chosen not to
include that name in my presentation because of certain pending
litigation, which I will address in a few moments. The bottom
line is-
Ms Lankin:
Sorry to interrupt. You said you'd chosen not to include your
name in the presentation. However, you have just put your name on
record in the Hansard. You're aware of that?
Mr Manuel:
I am aware of that, and I'm also aware of the rules regarding
parliamentary privilege, that they don't apply in this room and
so forth and so on. It is for this reason that I am being most
careful. I certainly don't mind using my own name. If you have
any questions, you have my telephone number, and it's on record.
The fact that I did appear here today is quite conveniently a
matter of public record. What I said, what I talked about, whose
name I mentioned, is another matter. So I'm going to be very
cautious there.
However, the bottom line
is, my daughter unfortunately followed in her dear mother's
footsteps and developed mental illness, during the course of
which she has regrettably decided that all kinds of horrible
things happened in her childhood which never did. I am named in
those activities, along with a very good friend of mine, her own
brother and her brother's friends, and it's a difficult situation
to deal with.
I have a professional
accounting practice, or had for much of my adult life, so for me
confidentiality is as automatic as knowing where the brake pedal
is on the car. You're not thinking about it all the time, but you
know it's there, you know how to use it and you're ever-conscious
of the need to have it very close by. Confidentiality to me is a
matter of deep importance.
1350
However, there were times
in my professional practice when I was visited by the RCMP and by
officers of the investigative unit of various levels of
government, Revenue Canada among them, in which they demanded
rights to see certain things which I considered to be
confidential between myself and my client. How did this happen?
Simply because there is legislative authority for them to do so.
That legislative authority in those cases overrode any
considerations, or almost all considerations, of the need to
preserve confidentiality. There was a conflict in my mind as a
professional practitioner as to whether or not the presumed
authority was in fact properly executed and whether or not I
ought to, notwithstanding the apparently important-looking papers
in their possession, release information in my possession to
these important-looking people. That is common to any
professional person, I'm sure.
However, it is that
particular element which I am looking for in this bill. Being a
defendant in a civil trial has meant that I have had to use all
of my resources not to prove that I am, beyond reasonable doubt,
not guilty of the things that were presented, but overwhelmingly
unlikely to have committed them and that my daughter is
overwhelmingly not to be believed. That's the challenge presented in a civil case,
different altogether from a criminal case. I am only one of
numerous fathers-typically fathers-who are defending themselves
against the accusations of mostly daughters-occasionally sons,
but mostly daughters-in this kind of situation where the daughter
has unbelievable confidence and sympathy, naturally, from the
community from which juries are being drawn and from the
community from which lawyers are drawn and judges are drawn.
Our problem is access to
medical records where they are relevant to demonstrating that
innocence is present. The basis of all of this is very simple:
you tell me you're sick. Show me how sick you are; show me what
kind of sickness you have. You tell me I am responsible for this;
show me that I am responsible. Show me that beyond any doubt I am
responsible. Let me demonstrate from those same records that
there are all kinds of things in there that, unfortunately
confidential though they may be, are useful to me in
demonstrating that I could not have done these things, that in
fact there are other mitigating things within those records.
That's an extremely difficult call to make, and I don't think any
father is qualified to make that call, although he is likely to
be very concerned about getting access to those records.
It is in that framework
that I have come today. Generally speaking, I think what I see is
fair. I direct your attention only to section 34. Again, I'm not
a lawyer. I am presenting what I think to be the place where we
might put something that would provide a need for people like
myself.
We have section 34,
"Disclosures in proceedings":
"(1) Subject to this
section, a health information custodian may"-that permissive word
"may"-"disclose personal health information relating to an
individual," and then we jump down to paragraph (e), "for the
purpose of complying with,
"(i) a summons, order or
similar requirement issued in a proceeding by a person having
jurisdiction to compel the production of information, or
"(ii) a procedural rule
that relates to the production of information in a
proceeding."
There's nothing wrong with
leaving those words there. I think they're useful. There are
procedural rules that are developed, some based upon common law
principles, some based upon statutory provisions. Summonses and
orders are generally issued with reference to statutory
provisions.
My question is, what
statutory provision exists which permits these things to happen?
How difficult is it for us ordinary citizens trying to get on
with our lives to do the things that are uncomfortable but
demonstrably necessary in order to overcome some of the obstacles
that are put in our way? I think if we have statutory authority
to fall back to, procedural rules and summonses and orders will
have some basis for their origin. That's all I'm addressing here
today.
I'm suggesting that section
34 be amended to include a further paragraph, and I put that on
the last page in bold of my very brief presentation. I'm still
not comfortable with the words and I'm certainly not a lawyer, so
I don't know why I would even presume to go this far except to
give some guidance as to the kind of character that I'm trying to
put into it: "a person defending a criminal or civil proceeding,
upon the order of a court, and upon such conditions as the court
may stipulate, where the action against the person is based upon
a medical or mental condition of the individual, and the person
requests, in prescribed form, such relevant health records as may
reasonably be considered necessary to presenting a fair
defence."
I think failure to do
something like this will regrettably play this whole act into the
hands of those for whom fairness is not a consideration.
Confidentiality, while useful, can unfortunately become a mask of
secrecy behind which culpable behaviour by practitioners such as
Lyn McLeod referred to, and others, and malicious or ill-advised
intent by accusers can proceed unrestrained. So we're not only
building a system by which there are rules by which to play a
very important game, but at the same time, if a violation of
those rules occurs, if something goes wrong in the middle of the
game, how do we solve that problem? What rules do we build to
say, "OK. Time out. What do we do now?" That's what we're looking
for. I say "we." I'm representing myself here, but there are
people like myself who share this very deep concern.
So I share that with you
folks. Thank you for inviting me into this process. Democracy
comes from all corners. I guess I come from one of those corners.
Thank you for your time.
The Chair:
Thank you, Mr Manuel. I'm advised our next group isn't here yet,
we don't think. Is there anyone here from Zero-Knowledge
Systems?
In the absence of that, I
would certainly entertain a brief question from each caucus, if
you're inclined to take questions.
Mr Manuel:
Yes, of course.
The Chair:
This time the rotation would start with the government
members.
Mr Wood: I
don't know that I really have any questions, but if you'd like to
leave your card, maybe we can get a little information for you on
this. I'm not sure to what extent the existing laws-you have to
read this law in relation to all the laws, so we may be able to
give you a little more information as to what extent what you're
trying to do here is already available.
Mr Manuel:
The problem with looking to other laws is that this law is
specific in addressing what happens with medical records. It is
in this place that we can not only provide confidentiality over
those records, but at the same time provide for exceptions to
that and access to them where necessary. I don't think we should
be looking all over the place and passing it on somewhere else.
I'm hopeful that this committee will accept the challenge to say
this is one place where we might codify that clear intent of this
government to be fair to all concerned. If you embody it, embody
it in this piece of legislation.
Mr Wood: If we had half a day,
we could get into all the complexities of legislative drafting,
which I'm sure you don't want to hear, but I'll see if I can get
some information for you and give you a relatively simple answer
as to whether or not what you're looking for is going to end up
being a part of this. If you'll give me the card, I'll try and
find something out for you.
Mr Manuel:
Thank you.
Mrs
Pupatello: I guess that's surrounding my same question,
that currently a warrant could be issued in order to access that
information now. Your lawyer would be able to arrange a subpoena
to get that.
1400
Mr Manuel:
The rules under which those are being issued are being eroded.
The federal government is amending the Criminal Code, which makes
criminal cases more difficult. Judges are bound by those rules.
Legislation should guide people in formulating those rules and in
issuing those summonses. I'm suggesting that this piece of
legislation is one place where such a rule might be provided for
their guidance.
Mrs
Pupatello: So are you telling me that at this point
you're not able to access a warrant or subpoena currently in
order to defend your case?
Mr Manuel:
I'm saying it is unnecessarily difficult, and becoming more so.
The thrust of this is confidentiality and limited access, and I
accept that. All I'm saying is, let's not make it more difficult
for ordinary innocent folks in the land to be able to defend
themselves against things which arise from those very medical
records that we're trying to get at. This is a place where we can
solve that problem. Doing so, embodying it in a piece of
legislation that says, "This is the way the game can be played,"
will guide people in issuing orders, will guide people in making
applications to courts requesting that information. It's becoming
increasingly difficult. The door is being closed on us. It should
be difficult, but it shouldn't be impossible. There should be
some specific direction that we can point to. I'm suggesting that
this bill could provide that place.
Ms Lankin:
I appreciate your comments. We've received letters from a number
of individuals who have raised the same concern. I think you are
showing an understanding of both the complexity and the balance
that has to be looked at. I also acknowledge that you've
suggested your wording is just a suggestion, an idea, and that we
should work with it.
I would hope, Mr Wood, if
you're able to provide some information to Mr Manuel, that you
can share that with us. I'd be interested in what the existing
provisions are.
I'll tell you my concern
with an approach that embeds it in the freedom-of-information and
protection-of-health-information privacy legislation. A number of
years ago, in Criminal Code and court proceedings, we had changes
to the laws that prevented defence attorneys from going after
personal medical record information of women, for example, who
were victims of rape: the rape shield clause. Again, I'm not
holding you to this wording; I understand that it's a best effort
that you've put forward. But something where the action is based
upon medical or mental condition of the individual opens up a new
access for lawyers to determine what that means and who it
applies to in a way that could have implications far beyond what
you're intending.
My sense is that the right
of access to appropriate information for defence purposes needs
to be understood and clarified if there is a problem, but not
embedded in an exception to the privacy rules. Otherwise you open
up a new way to get access to medical records for a whole range
of things that you wouldn't want and I wouldn't want people to
have access to medical records for.
I just place that forward
as a concern, but I think Mr Wood's undertaking is very helpful.
It will be helpful to all of us.
Mr Manuel:
"Under such circumstances as might be prescribed by regulations."
I mean, there are ways around these things, to embody in the
legislation that there is a clear intent to be fair and to
provide an avenue for access from which you can then develop
regulations that limit that. I understand the process by which
these things happen to some degree, but not to walk away from it.
I don't think that's reasonable, for a government to walk away
from it.
I'm extremely sensitive to
your concern for violation of privacy, but when you're telling me
that it's my fault and I did it, I'm sorry, ma'am, I want you to
show me. I want to have the same right of access to the
information upon which you decided that, in order to prove that
it couldn't possibly have happened. Regrettably, that rests in
the medical records and only there. Because it rests only there,
it becomes critical to a defendant to have access to it,
notwithstanding the fact that I'd rather not see my daughter's
medical records. Honestly, I don't want any part of this, but I'm
sucked into the vacuum, the void, of this thing. I have to fight
with everything I've got. Some of the things that I've got are
the things that you've got. Some of the things that my daughter
has are the things that I want to have. That may seem unfair, but
fair's fair, folks. Give me an equal opportunity.
How do we draft those
regulations? We don't draft the regulations by saying somebody
else is doing this. We don't draft the regulations by walking
away from it. We codify it, we embody it in a piece of
legislation, we write supportive legislation, we design forms, we
establish regulations and procedures, and we embody that into the
legislation and support it through these other mechanisms. I
really encourage you that this is important to a small number of
people in Ontario, but to that small number, it is exceedingly
important-the most important, horrific thing that has ever
happened in my life. I have sustained a near bankruptcy, I have
gone through a fire, I have lost money in the stock market, but
nothing compares to the anguish that I have felt through this. To
have my government close the door a little bit tighter on me is
not acceptable. Sorry.
The Chair: Thank you very much,
Mr Manuel. We appreciate your taking the time to come before us
and bring your perspective here today.
Mr Manuel:
I'm prepared to leave several cards for general use if anyone
else wants to-
The Chair:
Thank you very much.
Ms Lankin, at lunch you
mentioned there was an issue, and I don't think our next
presenter has arrived yet, so perhaps this is as good a time as
any.
Ms Lankin:
Thank you very much, Mr Chair. I've been trying to turn my mind
to the process for committee to deal with this bill, given that
our public deputations are scheduled at this point in time to end
midday or so tomorrow. I must indicate that in the back of my
mind is also the rampant rumour that the House is going to
prorogue. If it does so without a resumption of the House to pass
a motion to carry on bills, this bill will be lost on the order
table.
I think the government has
acknowledged the benefit of hearing from people, that there are a
number of issues and ideas that the ministry is listening to and
taking account of and that will be part of their advice back to
the minister of what has taken place in these proceedings. I also
think, however, there has been a genuine expression on the part
of all three political parties to see a non-partisan process of
working together to come up with some recommendations which may
inform the ministry's work and/or the advice to the minister. The
minister can do with that advice what he will at that point.
In speaking with Mr Wood,
what I would like to propose, and see if committee members think
this would be useful, is that we ask legislative research to
produce the summary of the proceedings with some of the key
recommendations-I'm sort of assuming that ongoing work has been
taking place as the hearings have been proceeding-and that that
summary be circulated to committee members. Perhaps we also have
an opportunity for that summary to be given to the ministry, and
the ministry could provide us with any key comments they
have.
There may be some
things-for example, Mr Jackson presented to us that it was not
their intent in any way for this legislation to interfere with
the scheme of the RHPA. It's not very necessary for the committee
to turn its mind to significant amendments or suggestions to that
area of the legislation if the ministry itself is embracing the
recommendations that have come forth.
So we might be able to get
a little bit of feedback from the ministry. Then the committee
could meet, with those two documents in hand, to discuss what we
think of the key recommendations that we've heard from presenters
and the ministry's response to them, and see if there's a
consensus on any number of issues to recommend to the government
with respect to the future of this type of legislation, whether
it be this bill, a new bill, or whatever.
In making this suggestion,
I do recognize that if the House prorogues, there is not a legal
mechanism for this committee to meet, but that MPPs who happen to
also be members of this committee can meet together as a group at
any time we wish.
I'd like to ask if
legislative research could tell us what a reasonable time frame
would be to receive a copy of a summary of these proceedings and
what the ministry would suggest it would need to respond in any
way to some of the key issues that have been heard. Perhaps we
could select a date that is mutually convenient to us as a group
and, depending on the status of the sitting of the Legislature,
at that point in time we could meet officially as a committee or
unofficially as a group of MPPs to discuss recommendations to the
ministry.
1410
The Chair:
First, I wonder if the research officer can give us an idea of
the timeline.
Mr Andrew
McNaught: I think we could have the summary early next
week.
Ms Lankin:
Monday?
Mr
McNaught: Yes.
The Chair:
Mr Jackson, might we put you on the spot for a second day in a
row and ask you not just from what you've been able to glean
sitting in the hearings themselves, but once you've had a chance
to look over the summary prepared by the research officer, what
sort of time frame would you be able to turn around and give your
thoughts in response to the recommendations that have been made
by deputants?
Mr Phil
Jackson: Probably about two weeks, to be fair, given the
volume, unless the committee decided to prioritize areas. That
might be a more workable approach. If you started to prioritize,
for example, the research issue, we could come back much more
quickly. To do it section by section is going to be that horrible
Pandora's box. And we're going to need some time to go over the
material, probably about 10 working days.
Mr Wood:
Mr Chair, it might be helpful to get some general comments early.
That doesn't preclude a second meeting where he's going to be
able to help us out on some technical matters, which are
important, of course, but it seems to me if we had a memo
summarizing what we've heard and sat down and took a look at
that, we might have some questions about that, and then invite
the members to offer their comments on the record. All of that
can then go into the ministry and they can take that under
advisement as they consider what to do with the bill. I think it
might be helpful.
The Chair:
What precisely are you proposing, that Mr Jackson be requested to
respond to with general comments within the week and then that we
meet, or do you propose we have a meeting and we frame the
categories that we would like general comments on?
Mr Wood: I
think we can wait until he's ready, if that's what the committee
feels is appropriate. There are certain dangers to that, so to
speak, that we'd have to take into consideration. Or we can meet
somewhat earlier. I think the key at this point is to give an
indication of what policy directions are deemed to be advisable
and not advisable. There may be consensus on some and there may
not be consensus on others. I think that's really what's helpful at the moment. My bias
would be toward proceeding without full benefit of some of the
technical advice from legal counsel, but I'm not strong on that.
If people want to wait, that's fine with me.
Mrs
McLeod: I think there's a potential consensus between Ms
Lankin's and Mr Wood's suggestions. Obviously it's important to
have the research officer's summation. I'm impressed at the fact
that he can have it done by Monday. I'd just like to recognize
that that probably means a great deal of overtime hours in order
to produce it, because I don't think he's had a lot more time
than we've had to digest this in the heavy hearings we've had.
But if that's a reasonable undertaking for him, that would be
fine.
As Mr Wood has suggested, I
think there would be merit in at least a subcommittee getting
together to look at the larger picture, at some of the areas
where there is likely to be consensus around amendments to the
bill. I say that being mindful of the fact that the ministry
indicated in the technical briefing that there were some issues
which really would require some political direction and policy
direction for them to make the changes. We would obviously need
their technical advice, as well as their experience in commenting
on those, but I think at one point it was suggested there be a
subcommittee meeting with MPPs and with the ministry staff
present so there can actually be a dialogue about this, as
opposed to a position and another position and another position.
I think that could be very helpful.
Ms Lankin:
On that basis, let me refine my recommendation and suggest that
upon receipt of the research officer's summation of the
proceedings, we set aside a time for a subcommittee meeting with
ministry staff present and we begin to explore some of the areas
and see where there may be a consensus. I think we can decide at
that point in time whether or not we see a value in the full
committee coming back together and receiving the technical
response in any of these areas from the ministry, or whether we
see ourselves undertaking a process of discussion about specific
amendments and/or whether by that point in time there's a
ministerial direction as to the future of this bill.
I think as Mr Wood has
indicated in some of his questions, one of the options is a bill
that's rewritten to look like the federal legislation, with
health imposed on top of it, or do we work with this framework
and try and build the federal similarities into it? That's going
to take a decision inside the ministry, but that minister's
decision might well be informed by the kind of discussion we
could have in a subcommittee.
Mr Wood:
Another alternative would be to have the subcommittee meet after
our meeting today with a view to some prioritization to help the
legal people.
Ms Lankin:
I'm afraid I'm not available after the meeting today.
The Chair:
Might I suggest a compromise, Mr Wood? Since we don't have a full
day tomorrow, perhaps we could remain after the last deputation
tomorrow to have a brief discussion about setting priorities.
Might I also suggest, recognizing two of the three caucuses have
caucus meetings in the first part of next week, in deference to
Ms McLeod's suggestion that it might be putting a strain on the
research officer, perhaps Wednesday morning would be just as
good, given that at least two thirds of the caucuses will not be
in the building. If that meets with everyone's approval, perhaps
we can give you a little more time to refine your work. Might I
suggest that next Thursday might also be a day that, depending on
what we discuss tomorrow, we could tentatively block off for
a-
Mr Wood: I
have another committee meeting that day, unless it changes.
The Chair:
Then let's just leave it that tomorrow afternoon we'll all come
armed with our schedules and hopefully find a mutually convenient
date relatively quickly. If I may add, we'll invite the ministry
to stick around tomorrow afternoon as well to be part of the
dialogue that has to take place.
Mrs
McLeod: Are the caucus meetings on Wednesday or earlier
in the week?
The Chair:
Ours are Monday to Wednesday. I thought yours were-
Mrs
McLeod: We had ours. I was here. I ask that only because
Wednesday, if we're free, might be an alternate day to meet next
week, but if your caucus meeting continues on Wednesday, that's
not possible.
PHILIP WYATT
The Chair:
We have a deputant here, so we'll take it a little out of
sequence, but in deference to the early bird, Mr Philip Wyatt
will be our next presenter.
Good afternoon, Mr Wyatt,
and welcome to the committee. Just as a matter of course, I don't
think you've had a chance to speak to the clerk, so in cases
where individuals come before us who may not be familiar with the
rules, unlike the groups that tend to be frequent visitors here,
for your protection we like to put into the record that while the
MPPs themselves may enjoy parliamentary privileges and certain
protections pursuant to the Legislative Assembly Act, it's
unclear whether or not these privileges and protections extend to
witnesses who appear before committees. For example, it may very
well be that the testimony you have given or are about to give
could be used against you in a legal proceeding. So we caution
you to take this into consideration when making any comments.
With that, the floor is yours.
Dr Philip
Wyatt: Thank you, Mr Chairman. I'm here representing
myself as an individual, although I am a physician in Ontario.
I'm the chair of one of the departments of genetics in this city.
I've served on many ministerial committees regarding consent and
confidentiality and I'm a practising geneticist.
Regretfully, I believe the
act as proposed should not be supported and needs to be
substantially rewritten and revised. I've read many of the
comments by other groups and I'm certainly not here to go through
it item by item. I don't think there's any point at this
time.
There are three points I'd like to address.
They're in my letter, but I'll speak to them briefly. Number one,
in reading the act I believe the intent of the act actually is to
open up files, not to close them down. I'm very concerned that it
appears that the intent of the act is to improve management by
allowing more access to confidential information than we should
permit. It's a philosophical point and I wanted to make sure I
had the capacity to address it.
1420
Second, I note in the
compendium they break the type of information down into two
types: personal health information and registration information.
The difficulty with the registration information in the province
of Ontario is, because of the system we have, where you go for
care is actually determined by the government to a great deal.
That is, we have centres where you go for cancer care, we have
centres where you go for addiction care, we have centres where
you go for abortion care. Even the compiling of lists regarding
registration provides some information regarding health care
status. I think that point needs to be reconsidered as the
information is looked at.
The third, which was most
concerning to me when I read it, is that geneticists-and genetics
is becoming more important in modern medical health care and in
the entire running of the health care system-deal with
information transmitted from generation to generation.
Traditionally, health care information has been restricted to the
individual or patient who is coming in for access for care. When
we're talking about genetic information, we are now at the point
where we can take your own genetic material, identify what
diseases you may have, may develop and have the risk of
developing. By having that knowledge, we have knowledge about
your entire family back several generations, and even future
generations.
I cannot see in the
existing act how the linkage between generations is prevented. I
can see that an individual may make a request to, for example,
identify all the individuals in 1950 who had the gene test for
breast cancer. By having that information, that means I know
whose children will develop the disease because I know how many
children they may or may not have, and by the way, I may know how
their grandchildren will develop the disease. I'm not sure-as a
matter of fact, I'm convinced that is not protected in the
current legislation proposed. That is, I think the access to
genetic information needs to be looked at as this information is
re-looked at.
I'll stop there. I really
felt so strongly, however, that I felt I should come here as an
individual and express the fact that I believe this is a very
badly written act and I would hope that you do something to stop
it at this point in time for a period.
The Chair:
That certainly leaves us time-about a minute and a half-for
questioning, unless we are still shy of the next presenter, in
which case, I'll be a little indulgent.
Mrs
McLeod: Thank you for coming. The whole issue of genetic
information, in particular, if I could focus on that. We've only
had it raised one other time, by ARCH this morning. The field of
research and knowledge is so new that I'm not sure that ideas
about how to manage that in terms of health privacy have even
been considered yet. Are you aware of any legislation dealing
with health privacy and medical records that addresses the issue
of genetic information?
Dr Wyatt:
The information is actually not new. We've had fairly good
genetic information and how to track it through families for
quite a long period of time.
Mrs
McLeod: So it's more the genome research that's new.
Dr Wyatt:
Every time, however, people have looked at linking and protecting
confidentiality, we have been assured a system will protect us
and we should allow the linkage. This is what was determined in
the European countries in the 1930s and 1940s. That didn't work
out well. We've had several efforts where governments have
assured us that we will not be using this confidential
information to start a population screening.
We've failed. Each time
this is looked at, people believe that the most important
relationship to protect and not violate is the confidential
relationship between the individual or the patient and their
health care provider. I think that's where it will sit for a
while. This is sensitive information that needs to be dealt with
on a one-to-one basis and we need to be very careful when we
establish systems that break that confidence. This proposed act
leads to the potential of breaking that confidence. I've used the
example here of a condition called sickle cell disease, but you
could substitute any condition you may want. If, in the future,
we develop genes that can identify intellectual potential, risk
for addiction or risk for alcoholism, do we really want to have
the capacity to reach into an individual's file-hopefully
blinded-extract that and hold that in some sort of database which
may be accessible when the right protections are not in
place?
Mrs
McLeod: Could I take it a step further? Do you feel that
there are some areas of health information which an individual
should not be required to provide as a condition of employment or
even as a condition of receiving insurance? Respecting the fact
that employers need to know about fitness for work, respecting
the fact that insurance companies need to know about risk
factors, are there some-and I think of it particularly in the
area of intergenerational genetic information. Is some of that
really not relevant to what the employer or the insurance company
has a right to know?
Dr Wyatt:
In some cases, the information needs to be very careful before
the individual or patient even requests the testing to be carried
out. We try to set up a system that involves an informed consent
process, where the individual requesting information understands
the strengths and weaknesses. I think the concern is if someone
identifies that you carry a gene that has potential damaging
effects on yourself, your family, your children or your relatives, humans handle that
in a very individual way and they may not wish their sister or
their brother to find out that they are also at risk. Currently,
we transfer the responsibility of the passing of that very unique
personal information on a individual-by-individual basis. It's
slow. It's sluggish. But it tries to deal with the sensitive
nature when you have such enormously impacted information, such
unique information.
I can very easily see the
proposed act being misused very quickly because of the capacity
to mine data, create lists and then be forced with the fact that
you've identified a group of individuals who are at 50% risk of
passing a disease on to their children and we feel obligated that
we must notify the at-risk individuals. I don't want us to get
into that position.
Ms Lankin:
A really interesting and thought-provoking presentation; a lot of
ethical issues down the road that we are going to have to grapple
with in many ways. I guess you're just suggesting let's not make
them any tougher than they're going to be.
Putting aside the research
and mining-of-data aspect of this for a moment, you made a
reference to the strength of the system lying in the
confidentiality and the relationship between the patient and the
health care provider. Some of the representatives of health care
providers-and I'm thinking here of the Ontario Medical
Association-said very clearly that confidentiality has to be
there, the trust has to be built into the relationship and
confidentiality is a large part of that.
However, the OMA did also
say, though, that if information is to be transferred between
health providers for the sake of providing health services, it's
the health care provider who should determine what's relevant and
what can transferred, and not the patient. This is sort of the
backwards way of getting at the issue of the lockbox. Who should
have control over that information? You've raised the prospect of
genetically inherited diseases. Using that as an example, should
someone be compelled to have that information travel along their
health record in between providers, or should they be able to
withhold that?
Dr Wyatt:
You're dealing with the core fundamental philosophical issue:
whose information is it? I think in terms of management, it's
clear that certain factors should be transferred relatively
easily. In other factors, I think that it may be very important
that if a woman, for example, had an abortion when she was 17
years old, she may not want to have that information
automatically transferred through the system every time she
appears in an emergency room or is treated for a flu, the fact
that that has appeared.
I think there are
mechanisms that you can put in place that say anyone who uses the
health care system in Ontario should know up front that we are
moving into a system that, if you contact the system, you will
have your information transferred unless you opt out. It may be
important at every site to have a sign that says, "Part of
Ontario's system is the movement of managed information. Do you
consent or not consent?" and allow an opt-out right at the
beginning. That may control the overall point of view.
I think there may be types
of information that you should have, implicit explicit consent by
the individual. Examples would be history of addictions,
abortions and genetic-based disease testing. I think, personally,
that should be left with the individual, not with the system to
say, "It's not relevant. I'll just transfer it through; no one
will care." We will in the end, and we will regret the fact that
up front we are not advising our patients contacting the system
that they have the right not to participate in information
transfer. One of the most concerning things about the legislation
as proposed is that we were apparently putting in steps where we
were saying, "Really, we can look after this; they don't have to
know that the information is being transferred." I think we
should know, as we walk through the door, that this is what we're
moving into.
1430
Mr Wood:
Have you had an opportunity to look at the federal privacy act
that was recently passed?
Dr Wyatt:
I've looked at some of it, not in as much detail as I have the
Ontario.
Mr Wood:
Have you looked at enough of it to offer any opinions as to
whether or not you think it might be a better model than the bill
we have before us?
Dr Wyatt:
I recognize that at the federal level there were ongoing
discussions, that one of the issues they did not properly deal
with is genetic information. There are a series of meetings
actually going on this month, which I'm attending, about that
legislation having some problems with it also. I think overall it
has strengths that are slightly better, but it has weaknesses. As
I, however, see Canada, we remain a federation, with each
province responsible for its own unique needs, and I think we
should deal with our own legislation, keeping in mind what the
federal individuals are proposing. But really we have a unique
system.
Mr Wood:
What are the strengths you would see in the federal act?
Dr Wyatt:
I'm sorry, I don't have the legislation in front of me, so I
can't answer that.
Mr Wood:
The use of this information for research: if we're going to have
disclosure without consent, it's generally thought there would be
an ethics review body to take a look at that. Would you favour,
in addition to that, the overlay of a sign-off by, say, the
Information and Privacy Commissioner?
Dr Wyatt:
The difficulty with utilizing institutional review boards or
research ethics boards-and I can say, because I'm the chair of
one-is that most of them are unfunded, voluntary and have no idea
what they're supposed to do. In addition, a great deal of the
research that's going on dealing with confidential patient
records is carried out by individuals who are in no way regulated
or controlled; that is, one government in this province
established what's called the Regulated Health Professions Act,
which ensures that people who access records have some degree of
professional and I think even monetary responsibility if there's
a mistake.
When you're carrying out
data mining by the lowest-level researcher in the university,
they tend not to understand how confidential and how personal
this information is. One of the great difficulties I see-and I've
presented a handout from this month's Nature Medicine, where
they've already identified I believe over 100 cases where people
have violated confidentiality because, since they're only
undergraduate students, they really don't understand how
sensitive some of this information is. I think that data mining
by research is a big area that's very important, but we have a
very weak infrastructure to protect ourselves from individuals
who are data mining who are not, for the most part, trained
health care professionals monitored by colleges with professional
responsibilities. If you make an error and you're an
undergraduate student in your second year, it's just an error,
it's not that big a deal to you. But it could potentially, in the
genetic area, ruin families for 10 to 20 generations in the
future, and they'll have no recourse. That's what concerns me
about the data mining, at least in the genetic areas.
The Chair:
Thank you very much for coming before us here today, Doctor.
Again I'll ask if anyone
from Zero-Knowledge Systems is in attendance.
MENTAL HEALTH LEGAL COMMITTEE
The Chair:
We'll move on to the Mental Health Legal Committee as our next
presenter. Good afternoon and welcome to the committee.
Ms Anita
Szigeti: My name is Anita Szigeti. I have to say that
I'm becoming a bit of a regular visitor here these days. I want
to thank you for your time. I'll let you know too that how often
I'm coming by these days is alarming to me, because if I'm here,
then there is at least some concern that the rights of my
clientele, who are psychiatric in-patients by and large, are
possibly being eroded by something that's being proposed.
The legal committee I chair
works on behalf of consumers of mental health services to protect
their legal rights. We have provided to you a very lengthy and
very detailed set of comments on Bill 159. It's our position that
patients in Ontario's psychiatric facilities have had a
legislated right of access to their clinical records and the
right to request corrections for almost 13 years, so we come at
our comments from that level of experience.
There are certain basic
protections in terms of access and disclosure of records that we
believe in, which are listed for you in the executive summary,
most of which I think are thought to be addressed in Bill 159.
However, upon a very careful and exhaustive and exhausting review
of the bill, we conclude that our clients are better served by
the existing relevant provisions of the Mental Health Act than
proposed provisions of PHIPA. I'm sure you've heard this from
other organizations. If you've heard from the Psychiatric Patient
Advocate Office already-and I'm sorry, I'm not on top of the
order of things-then you've probably heard some of these
concerns.
I'm not going to trouble
you in my oral submissions with any of our concerns relating to
disclosure. I'm going to focus on the business of access and
certain very specific amendments that would impact my practice
and that of my colleagues in terms of representation of these
folks at proceedings of the Consent and Capacity Board, things
that very much worry me.
Having said that, I think
I'll tell you a little anecdote to illustrate for you how I think
things should go. Some time ago I was asked to come and represent
a client at one our provincial psychiatric facilities, I think
maybe the one that's left, or one of the very few. In due course,
I phoned ahead and made the appointment to say I was a lawyer
coming by to see my client's records. I showed up there, and when
I went in I was asked, "What unit?" I gave my client's unit
number. They said, "What is your name?" I told them and I spelled
it. They checked in the computer. The woman said, "Humph," and
she went off. The next woman came and we went through the same
thing: I gave a unit number and a name; she looked in the
computer. I thought, "They're very well organized here. When you
call to say you're coming by, they put your name in the computer
and if there's some problem"-eventually the third woman came. She
said, "Here to see your records?" I thought, "All right." All of
them believed me to be a psychiatric in-patient because it was
records access day at the facility; in other words, every
Wednesday, all day, for the in-patients of the provincial psych
facility who want to come and view their records.
To me, this illustrates how
things should go for this clientele. When they feel like it, if
it happens to be a Wednesday or on another day, they should be
able to come by and access their clinical record. Why? On one
occasion, I have a client who's been in for more than 53 years.
There's not a lot going on. These folks want to know what's being
said about them and they're entitled to know what is said about
them. These are very sensitive records. They have every right to
see and to ask that corrections be made to these records. It is
not always this easy, and I have real concern that provisions in
Bill 159 would make this type of easy access to one's own record
really difficult for psychiatric in-patients.
Particularly, the ways in
which I think our clients are better protected are under the
provisions of sections 35 and 36 of the Mental Health Act. My
main concern is that whereas now if a physician wants to withhold
access to the clinical record of a patient, it is the physician's
onus and obligation to apply to the Consent and Capacity Board,
as you know, within seven days and make the argument with respect
to harm. That is section 36(6) of the act, and those harm
criteria are a very high threshold. It's about serious bodily
harm to another person or serious mental harm to another person.
It also contemplates serious interference with ongoing, real
treatment of the individual. That's the way I think things need
to stay.
With the changes contemplated in Bill 159, what
you get is the prospect of a patient asking to access their own
record and 30 days for the initial contemplation of a refusal.
Maybe you get that refusal, maybe you don't. If you don't ever
get the refusal, then you don't even have a deemed refusal
section so that the individual can apply to the commissioner on
that. That's very frightening in terms of our clients' right of
access.
Plus they need to pay a
fee. When you're a psychiatric in-patient and you've got a $112
comfort allowance or personal needs assistance and the public
guardian and trustee is managing your money, even a $5 fee is
going to be something that's going to be difficult for you to
come up with and organize. To go then to the commissioner as
opposed to the Consent and Capacity Board, which has the
expertise that in my submission is required to look at questions
of harm to another individual or interference with treatment to
withhold a record, I think is inappropriate. The seven-day
deadline that's already in the Mental Health Act is there for a
reason: because proceedings of the Consent and Capacity Board
must get underway within seven days of the time of an
application.
1440
If we were to lose these
protections in the Mental Health Act in terms of access and the
decision to withhold those records or not, I think you're going
to see a complete bogging down of the process of the Consent and
Capacity Board and essentially an abuse of process by patients,
who will apply where they otherwise maybe would not have for
various proceedings before the Consent and Capacity Board,
because if they do that, if the physician wants to withhold their
records and makes a statement as to expectation of harm, then at
least that issue must be dealt with by the Consent and Capacity
Board in a very expedited fashion in order for the rest of the
hearing to proceed.
I have a concern about that
because that's what I, as counsel, will be left with in terms of
advising my client: "Well, you'd better apply. Figure out a
reason"-and there will be a reason if someone's in a psychiatric
hospital-"to apply to the Consent and Capacity Board to review
your involuntary admission or your treatment decision, and then
they are the ones who will have to deal with whether access can
be withheld from you as opposed to your waiting for the rest of
your life for the commissioner to deal with it or for a refusal
to come."
Otherwise, the process of
the board when there's a hearing that's been scheduled on
someone's involuntary admission will be interfered with if we
need to wait for another tribunal and another process to
determine whether the client can have access to their records for
purposes of that hearing on their involuntary admission.
You have to keep in mind
that when we talk about psychiatric in-patients and their right
to a hearing before the Consent and Capacity Board, you're
talking about liberty and trusts that have been infringed, and
it's absolutely appalling to contemplate that the individual who
goes before the board to litigate these serious issues, to try
and get their freedom back or their autonomy to make decisions
back, would need to wait longer than the seven days to deal with
the issue of access. I'm focusing on that because that, to me, is
the single most important issue.
I'm only going to speak for
a couple of more minutes and talk to you about the Health Care
Consent Act amendment that is proposed, that in my view stems out
of what I've just said. I'll tell you from a practice
perspective, and this is on page 3 of the executive summary under
consequential amendments amending the Health Care Consent Act,
right now section 76 of the Health Care Consent Act has a part I
and a part II. Part I entitles you to look at evidence that the
physician may want to put in at a hearing, and that's sort of due
process and common. Part II, though, affords the psychiatric
in-patient and her counsel basically an automatic right of access
and the right to make photocopies of the entire clinical record
at, it currently states, her own expense in preparation for a
hearing of the board when capacity is an issue.
This single provision,
subsection 76(2), has been the key to effective, competent and
timely representation by legal counsel of all psychiatric
patients who have an issue that they want to proceed to get
reviewed by the Consent and Capacity Board. The amendment that's
proposed in Bill 159 would erode what can be read as an absolute
right to that access and to the copies because it adds the phrase
"subject to subsections 34(5) to (9)" of Bill 159, where a
physician may register a statement with respect to harm.
That's hugely problematic
for me, because when I now go out to an institution to represent
my client I face a lot of barriers already in terms of accessing
their record. I'm often told that the client needs to execute a
form 14, which is incorrect and a barrier to me because our
clients are often paranoid; they don't want to put their name on
a piece of paper, on a form 14. That doesn't mean they don't want
me to look at their records and represent them competently; they
just don't want to sign anything. I often get a lot of trouble
about making copies of their records and I'm very often told that
it will cost me $300, $400, $500 to get the first 10 or 50 pages
of that record. All of these things are barriers that need to be
removed and not made more complicated. So I really urge you, if
you're going to do this, to preserve the absolute right that I
have as counsel to review my client's records in anticipation of
a Consent and Capacity Board proceeding and, if at all possible,
either remove the phrase "at my own expense or that of my client"
or ensure that any capping on fees for photocopying that are
contained in the rest of Bill 159 is consistently applied to this
section of the amended Health Care Consent Act.
Basically, having said
that, our conclusion is that our clients, for a good reason, have
enjoyed essentially a Cadillac model of rights protection in
terms of disclosure and access to their records, and that's
because these are psychiatric records. They are the most
sensitive records that an individual can have in terms of health
records, and that's
because whatever information is contained within records that are
compiled in a psychiatric facility will go on with the individual
for the rest of their life and potentially cause there to be an
involuntary admission, a removal of the right to make your own
treatment decisions. Also there's a huge amount of stigma that
attaches to the fact of a diagnosis and treatment of a mental
disorder.
I appreciate that the
thrust behind the bill is to consolidate and unify the way health
records are handled in various institutions, but I think there's
always been the acknowledgement that mental health records are
different, and I see no reason not to continue protecting them
that way.
This is the last point. On
the same general thrust of things, there is already precedent in
the way the Health Care Consent Act and the Mental Health Act are
structured, where if you're found not capable with respect to
treatment-that's medical treatment-you don't get independent
rights advice about your right to apply for a hearing on that.
However, if it's psychiatric treatment for a mental disorder and
you're a patient within a psychiatric facility, you get the extra
protection of rights advice attaching to that.
With respect to the
sections that are in Bill 159 about capacity and the review of
findings of capacity, I really think it would be a mistake, one
that's potentially very tragic, to replace the existing
provisions of the Mental Health Act with ones in 159 which don't
require rights advice to be provided upon a finding of incapacity
with respect to your records.
My suggestion is that you
either leave the Mental Health Act alone and let it be paramount
over everything else, the way it always has been and continues to
be, or you make a stronger effort to import the higher level of
protection in the Mental Health Act consistently into Bill 159
into different contexts.
I'm going to stop there,
and if that leaves time for questions, I'm delighted.
The Acting Chair
(Mr Toby Barrett): Thank you, Ms Szigeti, for your
presentation. That would leave just short of two minutes' time
for each caucus. Ms Lankin, do you have a comment?
Ms Lankin:
Anita, thanks again. Your presentation is informative and helpful
and I'll take time to read the more detailed submission that's
here.
Yesterday we had a
presentation from a law firm which raised an issue-which later
was disputed by a number of lawyers, but there you have it, the
issue is before us now. They raised an issue we hadn't heard
before. It was with respect to the concept of informed consent
and presumed capacity. They essentially said that we're not
talking about treatment here but the concept of informed consent
from the Health Care Consent Act, the real legal meaning about
understanding the treatment and the consequences of having the
treatment or not having the treatment. It is not reasonable to
ask a health care custodian, which may be a hospital, to know
what the inevitable consequences or reasonable consequences of
consent to disclosing the information may be when it's being
disclosed to a third party, or even a doctor if disclosing with a
patient's consent to an insurance company to know what the
insurance company is actually going to do with it.
They said that there's a
difference between informed consent and consent with knowledge,
"Give the person all the information," but somehow they made a
legal distinction between consent with knowledge and the standard
of informed consent.
The other thing they said
is that with respect to assessment of capacity, the capacity to
understand the consequences of giving consent to a treatment, as
assessed by a health care practitioner, is totally different than
the capacity to give consent for disclosure of information, and
that again it's unreasonable for a health care custodian, who may
well not be a health care practitioner-it could be a community
care access centre, a district health council-to have placed on
them the burden of determining whether that person actually is
capable and what is the capacity test. I got sort of blown out of
the water on that because those words are so used in the health
care system, and in mental health, with respect to disclosure of
records and everything, they're used. But in general, outside of
mental health, in the rest of the health care system, we have not
tested these standards. Do you have any comments about that?
1450
Ms
Szigeti: I have two comments. One, the Mental Health Act
historically has placed the obligation on the health care
practitioner to make these determinations in terms of capacity to
consent to or refuse disclosure of your record, and also in terms
of the capacity assessment.
Ms Lankin:
Practitioner versus health care information custodian?
Ms
Szigeti: That's right, because in the Mental Health Act
you're talking about a physician who is also more than likely the
individual providing the treatment, not on the facility, and
that's fair.
In our paper we suggest
that the optimally perfect thing to do, if you're talking about
capacity assessment with respect to something esoteric like the
notion of disclosure of your health records, is set up a category
of individuals who are capacity assessors for this purpose, or
somehow provide training to capacity assessors already
established through the Substitute Decisions Act to come in and
make a specific determination about the specific capacity
issue.
Having said that, it can be
such a big deal. If you know what's in the records and you're
able to say, in our context, to someone, "Look, we've given you a
diagnosis of schizophrenia and when we disclose this record to
another provider somewhere, they will approach you based on that
basis. If we don't provide this record, they may not have that
diagnosis." Those are some of the types of consequences.
Whether I would draw a
distinction between informed consent versus consent with
knowledge, I'm not sure. If the concern that was raised yesterday
is that the person giving the information may not themselves fully
understand the ramifications, then how are they getting full
information such that consent with knowledge can then be
obtained? I don't actually see a meaningful distinction there. I
don't know if that's of any assistance at all.
Mr Wood: I
wondered if I might ask your opinion with respect to fees. One
suggestion we've heard is that the fees should reflect no more
than the actual cost of providing the information. What is your
reaction to that possibility?
Ms
Szigeti: My reaction is that in the context that I'm
concerned about, which is getting copies of records when I'm
trying to assist a client in a seven-day time frame to turn
things around for a hearing, I don't believe I should be charged
anything. But having said that, the types of costs hospitals
charge in using the photocopy room as a profit centre that may be
appropriate for lawyers to come and get access to records in a
personal injury lawsuit are not appropriate in some other
context. Fees that commence with $150, $200, $300 for the first
10 pages are wrong. I don't know what the actual cost is and I
don't know how that would be determined, but if you look at a
10-cent-per-page cost, that's a nominal cost that most people
would be willing to pay, and I don't really want to put a figure
on that.
I think the most important
thing would be to have flexibility, which there is in Bill 159 in
terms of waiving the fee where it seems appropriate. But what I
would like to see is a mechanism to appeal that decision-for
instance, not to waive the fee to a psychiatric in-patient such
as my client-to the commissioner if a decision is made that no
discretion will be exercised to waive a fee. If it's a
substantial fee, then I would like to be able to appeal that
decision so that my client, who has very limited resources,
doesn't end up paying out of pocket. But actual cost for
photocopying is better than what is currently the practice. So if
I had to, I would support that.
Mr Wood:
To allow an appeal, the cost of the appeal would be greater than
the cost of the photocopying, wouldn't it?
Ms
Szigeti: I don't know. I'm accustomed to a $5 freedom of
information search fee, so that's the kind of things I would
think about. Would the out-of-pocket costs of the appeal be more?
I guess it all depends on whether or not our provincial legal aid
system were kind enough to fund services for that type of
appeal.
Mr Wood:
That's what I'm saying. In actual fact, the cost of the appeal
would be far in excess of the cost of the copying, wouldn't
it?
Ms
Szigeti: I suppose the cost of defending that appeal
might outweigh the cost that you're forgoing in place of
recovering the photocopies. So it would work both ways, would it
not?
Mr Wood: I
guess what I'm trying to say is, would we not be
over-judicializing if we allowed an appeal for the cost of
copying?
Ms
Szigeti: I think it would only take one good appeal to
set the standard. You'd then wave the case around for people, and
my hope would be that at that point there would be a working
relationship between the health information custodian and the
subject of the information. So it wouldn't happen.
If it can be stipulated in
regulations that there are certain situations where no fee is
appropriately charged, that would really be my preference. My
clients' legal issues, in terms of the relationship of those
issues to their involuntary hospitalization, would be the types
of issues I'd like to see not burdened by negotiations around
costs of photocopying.
Mrs
McLeod: I know you were focusing on access but you
extensively discussed disclosure as well in your brief and, for
the record, I want you to comment on it. Your perspective, as
you've set it out in your brief, and a perspective that was
provided to us this morning by the Centre for Addiction and
Mental Health commenting on section 33, suggesting that it be
expanded somewhat to deal with risks to the individual by being
able to provide health information to community care providers;
the concern being the individual who is discharged from a
psychiatric institution or perhaps from a jail. I've used the
example of cases we've dealt with of someone literally put on a
bus in order to find his way to a hospital and not being able to
do that. That is a much broader aspect of disclosure, because
you've said here that the disclosure should only be where there
is risk to an individual other than that individual.
Ms
Szigeti: Right. So the question is, should there be
disclosure without consent based on the potential for harm to the
individual if the individual fails to give their consent, as
opposed to based on harm to others? Is that the question?
Mrs
McLeod: Exactly. I think you've it addressed in your
brief. But I wanted you to comment on the recommendation we had
this morning that we need to be able to provide community support
to somebody who is being discharged.
Ms
Szigeti: Throughout our brief we're consistent in this.
I think it all depends on capacity. The simple fact is, capable
people have the right to risk and incapable people have the right
to have informed decisions made on their behalf. So I would not
support the notion of disclosure without consent in respect of
records of an individual who is otherwise considered capable of
giving that consent. I think that violates some very basic
tenets.
Mrs
McLeod: Presumably you'd like to think that if they're
not considered capable of giving consent, they're also not being
put on a bus on their own.
Ms
Szigeti: I don't know if I can comment on that, but I
would certainly say if they are considered not capable with
respect to that consent about their records there is a substitute
decision-making regime both in Bill 159 and in the Mental Health
Act, if you leave it alone, and that ought to work fine, at least
in theory.
The Acting
Chair: Thank you, Ms Szigeti.
Is there a representative
here from Zero-Knowledge systems?
COLLEGE OF DIETITIANS OF ONTARIO
The Acting
Chair: We are running a little ahead of schedule. I
wonder if we could move down to the College of Dietitians of
Ontario, if you could approach the witness table. Good afternoon.
We would ask if you could identify yourselves for members of the
committee.
Ms Shirley
Lee: Good afternoon. We're here to present on behalf of
the College of Dietitians of Ontario. I'm Shirley Lee, registrar
of the College of Dietitians of Ontario. With me is Mr David
Buell, who is a public appointee on the council of the
college.
Due to time constraints, we
will not be speaking on all the issues that are in the written
submission before you.
First of all, I would like
to tell you a little bit about the college. The College of
Dietitians of Ontario is one of 21 regulatory health colleges. It
was established on December 31, 1993. The college presently
regulates approximately 2,200 dietitians whose practices focus on
health promotion as well the treatment and prevention of diseases
using nutritional means. Dietitians practise in many different
settings, including home care, hospitals, long-term-care
facilities and public health units, just to name a few.
The primary duty of the
college is to protect the safety and interests of the public. The
college fulfills this duty under a group of statutes that
includes the Regulated Health Professions Act, 1991, usually
referred to as the RHPA; the Health Professions Procedural Code,
which is schedule 2 to the RHPA; and the Dietetics Act, 1991. The
RHPA and the code apply to all 21 regulated health colleges.
1500
The statutory functions of
the college include: establishing and enforcing standards for
issuing certificates of registration to dietitians; establishing
standards for professional practice and conduct for its members;
investigating and holding hearings on allegations of professional
misconduct, incompetence or incapacity in order to make
appropriate findings and assess appropriate penalties; and last,
not the least, developing and implementing programs to promote
continuing competence among its members.
The college commends the
Ministry of Health and Long-Term Care for its efforts in
developing privacy rules for the health sector. The college
recognizes that this is a complex piece of legislation and that
the ministry has had two previous consultations with its
stakeholders on this topic. The college has participated in those
consultations. The college agrees with the principles of this
piece of legislation, which appear to be consistent with the
intent of the privacy provisions in the RHPA. These principles
are also consistent with the college's expectations of its
members regarding the handling of patient health records.
After reviewing the PHIPA,
the college is concerned that many provisions of the PHIPA may
not apply well to the colleges. First of all, health regulatory
colleges are fundamentally different from individuals and other
organizations that have been classified as health information
custodians in the PHIPA. Colleges do not provide health care
services nor do they directly collect health information to
create personal health records. Colleges collect health
information from health practitioners and health care facilities
in order to perform their regulatory functions, including
investigating complaints and, when appropriate, holding
disciplinary or fitness-to-practise hearings on allegations of
professional misconduct, incompetence or incapacity.
We believe that the college
has an obligation to protect the confidentiality of personal
health information that is in the college's possession. Colleges
are already subject to strict privacy provisions in the RHPA.
With the exception of a few very specific circumstances, section
36(1) of the RHPA requires every council member, committee
member, staff, consultant, legal counsel and volunteer to
preserve secrecy with all information that comes to his or her
knowledge during the course of the duty, with the exception that
the information can only be used in the administration of the
RHPA. This provision applies to personal health information as
well. A breach of this privacy provision is punishable by a fine
of up to $25,000.
The college is concerned
that the PHIPA may impair its ability to protect the public. The
college recognizes the effort that has been made to address some
of these concerns that we have expressed in previous
consultations. However, conflicts between provisions of the PHIPA
and provisions of the RHPA still exist. These inconsistencies
will make it difficult for colleges to enforce its standards and
hold its members accountable for their actions. For this reason,
the college recommends that the health regulatory colleges be
exempt in part by regulation from being classified as personal
health information custodians. We have made some suggestions on
specific wording, but I'm not going to go over it verbally.
As indicated earlier, there
appear to be inconsistencies between PHIPA and the RHPA, and I
would like to provide some examples. The first example is the
conflict between the disclosure provision of the PHIPA, section
36(1) and the power of the investigator under the RHPA, sections
76 and 78. According to section 36(1) of PHIPA, the disclosure of
personal health information by a health information custodian to
a college appears to be discretionary. This would seem to be in
conflict with sections 76 and 78 of the RHPA, which authorize
investigators appointed by the college to enter business premises
of a member and review, remove and/or copy documents, including
personal health information documents, without consent.
If the PHIPA overrides the
RHPA, a health information custodian may refuse to disclose
health information records to an investigator appointed by the
college, which would make it difficult for the college to conduct
investigations or hearings. This may pose significant risks to
the public, particularly when the investigation involves sexual abuse of
patients or gross incompetence of a regulated health
professional.
In addition, section 11 of
the PHIPA stipulates that the PHIPA prevails over other acts
where there is conflict in provisions respecting confidentiality.
This contradicts section 76(4) of the Regulated Health
Professions Act, which also stipulates that the section relating
to the power of the investigator applies, despite any provision
in any act relating to the confidentiality of health records. So
which one prevails over which one?
Another example of conflict
relates to the reporting provision in the PHIPA and the mandatory
reporting provisions in the RHPA. There are two mandatory
reporting provisions in the Health Professions Procedural Code,
schedule 2 to the RHPA. Under section 85.1, regulated health
professionals must report the sexual abuse of patients by any
regulated health professional to the appropriate college. Section
85.5 makes it mandatory for employers to report the termination
of a regulated health professional for reasons of professional
misconduct, incompetence or incapacity. These mandatory
provisions aim at reducing risks to the safety of the public.
However, under section 33 of PHIPA, the disclosure of health
information by a health information custodian for the purpose of
eliminating risk to an individual's safety appears to be
discretionary. Since the proposed PHIPA is supposed to override
the RHPA, an individual may choose not to report sexual abuse of
patients by health professionals and they may choose not to
report terminations related to professional misconduct or
incompetence.
There also appears to be a
conflict between section 24(2) of PHIPA and the investigative and
disciplinary roles of the college under the RHPA. Section 24(2)
of the PHIPA requires health information custodians to make
reasonable effort to ensure that the health information is
accurate, complete and not misleading before using or disclosing
it. This provision appears to be in conflict with the role of the
college. Under the RHPA, every college is required to investigate
allegations of professional misconduct, incompetence or
incapacity. Incomplete, inaccurate or misleading patient health
records are often collected as evidence. To fulfill its role, the
college is obliged to collect the health information as it
exists, even if it is incomplete, inaccurate or misleading. Such
information may be crucial for proving the guilt of the member
and for taking disciplinary actions against the member. As these
inconsistencies may make it difficult for the college to carry
out its mandated function, the college recommends that section 11
of PHIPA be amended so that where there is conflict between PHIPA
and the Regulated Health Professions Act, the Regulated Health
Professions Act should prevail.
Having pointed out some
discrepancies between the PHIPA and the RHPA, I would like to
make some comments on an excellent provision relating to the
promotion of quality-of-care information in the PHIPA. One very
important and proactive function of the college is the
development and implementation of quality assurance programs that
require participation of all members. The purpose of such
programs is to ensure that regulated health professionals
continue to maintain and improve their competence to practise.
These quality assurance programs usually require members to
assess their own competence and to take actions to address any
identified need. Members are also required to provide information
relating to their QA activities to the college.
If we want members to
participate in these QA programs in a meaningful and candid way,
members must be assured that QA information, whether it is in the
possession of the college or the member, will be kept
confidential and will not be admissible at proceedings. Some
short-term measures were introduced to provide protection until
the PHIPA could be enacted. However, the protection in the PHIPA
is broader than the interim measures provided in the Health
Professions Procedural Code. First, all information gathered for
QA purposes is covered, not just the information about the
member. The information is protected from disclosure in pre-trial
discoveries, not just, as might be the case now, at the hearing
itself. There is protection for civil liability given to those
who provide the information, not just to those who gather and use
it.
1510
In sections 40 to 43 of
PHIPA, the protection of QA information appears to be limited to
quality of care committees of hospitals. This college believes
that the college's QA activities would be more effective if they
were covered by the protection provision under section 40 of
PHIPA. For these reasons, the college recommends that section 40
of PHIPA be amended so that the definition of "committee"
includes the quality assurance committees of colleges.
Our last recommendation
relates to the Business Corporations Act. Bill 152, the recent
proposed amendment to the Business Corporations Act, if passed,
will allow regulated health professionals to incorporate their
practices. These health professional corporations would most
likely collect and use personal health information. To ensure
that the privacy of such information is protected, health
professional corporations must be subject to PHIPA.
We recommend that if Bill
152 is passed, section 2 of PHIPA should be amended to include in
the definition of "health information custodian" professional
corporations owned by regulated health professionals under Bill
152.
I would like to thank the
standing committee for the opportunity to provide comments from
the college, and we request that our recommendations be
considered and adopted. We would be pleased to answer any
questions that you may have.
The Acting
Chair: That leaves two minutes for each caucus, and we
will begin with the government members.
Mr Wood:
Do you have the power to subpoena records?
Ms Lee: At
a hearing.
Mr Wood:
Do you have the power to do that during the course of your
investigation?
Ms Lee: During the course of
investigation, an investigator appointed by the college right now
would have the right to enter the premises, usually with a
warrant, and to take any evidence, copy any information or remove
any objects that are relevant. Right now, in RHPA, the wording is
such that people are required to comply.
Mr Wood:
The warrant comes from whom?
Ms Lee: We
would have to apply for it, but it is not a must. As the Health
Professions Procedural Code stands, the investigator has that
authority with or without a warrant. What we are saying is that
the provision in PHIPA may dilute that power.
Mr Wood:
Suppose we were to say, for the sake of argument-I'm not saying
we're going to do this-"We'll accept your submissions to take you
out of PHIPA and leave you in the Regulated Health Professions
Act, but if you want to get a record of somebody, you've got to
get a search warrant to do that," would you have a problem with
that?
Ms Lee: We
are working under that right now. I just want to clarify that
when we say we'd like to be exempt in part from being health care
custodians, we're not saying one way. There are many different
ways of doing it. We may not have to be taken out totally, but
what we are pointing out is that as it stands now, many areas do
not work, many provisions do not work. We've suggested one way of
doing it but there are many different ways, and we are not
suggesting that the only way is to take us out totally.
Mr Wood:
We understand the concern. I'm saying if, for example, we were to
meet that concern and say to you, "All right, if you want to have
access to a health record, you have to get a search warrant from
a court before you can do that," could you continue your work
under a regime of that nature?
Ms Lee: I
can't answer that question without consulting our legal counsel,
because I don't want a situation where we cure one problem and
create another problem. So I have to say I cannot answer that
question at this point.
Mr Wood:
If you have a chance to consult with your legal counsel and give
us the answer to that, that would be helpful, to myself at least
and perhaps to the committee and the ministry.
Ms Lee:
Sure.
Mrs
McLeod: I'm one of the ones who has been persuaded by
the effective representation of the regulated colleges that we
have to make some changes. One of the directions that we've been
at least discussing around the table is the exclusion that's been
recommended, but as well to specifically recognize the Regulated
Health Professions Act in terms of the protection of your ability
to carry out your regulatory duties. One of the questions we've
been posing back to people is what would be missing if we went as
simple a route as that. You pointed out a couple of things in
your brief that would probably need to be added to the Regulated
Health Professions Act if in fact you were not to be included in
Bill 159.
I also appreciate that you
are the first ones, I think, who have recognized this issue of
the incorporation and the Business Corporations Act. I guess that
could be covered under Bill 159, it could be made to apply to
Bill 159 without having to be under companion legislation that
deals with the commercial sector. Would that be your sense of
it?
Ms Lee: I
will leave it up to the legal experts to deal with that.
Ms Lankin:
Thank you for your presentation. I have one quick question. With
respect to incorporated health care practices, could you tell me
why it is you think the bill, as it stands, wouldn't cover them?
You are talking about practices that are owned by members of
regulated health professions and they fall under the definition
of health practitioner, which falls under the inclusion of being
a health information custodian.
Ms Lee:
From my limited understanding-and I would have to check with
legal counsel-once there's an incorporation, the corporation
itself is a separate legal entity from the practitioner. That's
why we felt it is important to make sure that's there, so there's
no misunderstanding, no vagueness in it.
Ms Lankin:
It would be interesting to have your legal counsel's views on
that.
Ms Lee:
This is actually recommended by our legal counsel, that it should
be-
Ms Lankin:
I'd appreciate getting a bit more background. Here's the nature
of my query: if the regulated health professional is de facto a
health information custodian, because they are collecting and
using and disclosing for the purposes of giving health treatment,
of providing health care, why would the corporation as a separate
entity also need to be covered, and do we run into problems then
in terms of transfer of information? I can't understand why the
entity would have access to that information.
Ms Lee:
From my understanding, the proposed amendments allow the
corporation to have multiple practitioners, more than one
practitioner. So it would be clear, rather than-
Ms Lankin:
So each one of them would be a health information custodian under
the act as it is.
Ms Lee:
Right.
The Chair:
Thank you very much for appearing before us today.
1520
CANADIAN LIFE AND HEALTH INSURANCE
ASSOCIATION
The Chair:
Our next presentation will be from the Canadian Life and Health
Insurance Association. Good afternoon and welcome to the
committee.
Mr Charlie
Black: Thank you, Mr Chairman. My name is Charlie Black.
I am the senior assistant of insurance operations for the
Canadian Life and Health Insurance Association. I'm very pleased
to spend a few moments with you this afternoon to make some
comments on Bill 159
and to express several concerns that our association has, based
on our review of the proposed legislation and on our experience
over quite a number of years with regard to similar legislation
such as the federal Bill C-6 and with other issues in the
protection of personal information.
The Canadian Life and
Health Insurance Association is the industry association or trade
association representing most of the life and health insurers
that are active in Canada. We have approximately 75 members who
account for about 90% of the life and health insurance business
in effect in Canada.
Life and health insurers,
and the provision of those services, are not typically regarded
as being part of the health care sector, although in some ways we
are very close to being part of that sector in the course of
paying or reimbursing the costs of some health care services that
are not covered under the Ontario health insurance plan or
similar provincial programs, and also in providing disability
benefits to meet some of the financial implications of serious
illness or injury.
As we understand the
legislation, it is essentially a sectoral code or piece of
legislation focused on certain designated entities within the
health care sector, and life and health insurance companies would
not be directly affected by the legislation as proposed
currently. In 1997, with the consultation paper that was released
by the ministry at that point-of course that was in the days
before Bill C-6-insurers and some other third parties were
included as health information custodians. We believe the current
approach is appropriate in current circumstances and is also
consistent with the other provinces-Manitoba, Saskatchewan and
Alberta-that have legislated in this area.
In spite of the fact that
insurers would not be directly affected by the legislation, our
activities in providing life and health insurance to Canadians
are very closely interrelated with the health care sector and
information flows with great frequency between the two sectors.
And I would emphasize that that is a two-way flow, although
personal health information and other personal information is
essential for the conduct and provision of voluntary insurance
services.
There are three main
activities of our industry that relate to this area. One-and by
far the highest volume of activity-is in the payment or
reimbursement of the costs of certain health care services,
coordinating and supplementing the provision that is made under
OHIP and other provincial programs. Primarily these involve the
costs of prescription drugs for individuals who do not qualify
under the Ontario drug program, the costs of dental services,
some hospital charges for semi-private accommodation etc, some
ambulance services, health care costs incurred outside Canada and
so on-a fairly long list. As I say, these are fairly high-volume,
and probably in the few minutes we spend together this afternoon
in the order of 8,000 to 10,000 claims will be processed in
Canada, approximately 40% of that in Ontario, for the costs of
health care services. So it is a high-volume area.
The second area where
personal health information is essential, as I referred to
earlier, is in the assessment of claims for disability benefits
when someone is unable to work because of an illness or an
accident-again provision of benefits in a complex system. In
other situations, benefits may be available under WSIB, from
Canada pension, from employment insurance, from auto insurance
no-fault benefits and so on, but the provision of disability
income replacement benefits is a very important service and a
very important benefit to individuals who suffer a serious health
problem.
The third area that is very
significant is in the evaluation of risk when someone applies for
insurance. Under a strongly voluntary life and health insurance
system that involves a wide range of choice to individuals, it is
essential to review information on the risk that individual
represents when he or she applies for insurance, and personal
health information is a key part of that assessment. Recognizing
the importance, indeed the essential nature, of personal
information for the provision of life and health insurance, our
member companies have recognized for many years the importance of
protecting the confidentiality of that information. The written
submission that I have provided to you, and I apologize that I
was not able to get that to you earlier, outlines a number of the
activities that our industry has been engaged in over an
extensive period of time.
For example, in 1980, 21
years ago, our industry, as far as we know, was the first
industry to adopt a privacy code, what we refer to as our "right
to privacy" guidelines. Those guidelines were presented to Mr
Justice Horace Krever when he was conducting his extensive survey
of the confidentiality of health information in Ontario, and he
included those principles or those guidelines in his report and
commented favourably on them. They have been revised
periodically, most recently in 1993. We should have revised them
more recently, but frankly there is so much happening with the
development of the CSA code, which is very similar to the
industry guidelines, and with the development of Bill C-6 that we
are focusing our attention on those issues rather than on what we
consider might be spinning wheels at this point in time in terms
of making slight amendments to our industry guidelines.
We have also been
involved-and I'm just highlighting a couple of the items in the
written submission-over the years in extensive discussions with
the Ministry of Health, as they have dealt for many years with
the development of legislation such as you have before you to
protect the personal health information of residents of
Ontario.
Given this history, I don't
think it would be any surprise that we very strongly endorse the
objectives of this legislation. We strongly endorse the
principles that underlie the legislation, although, as you'll
note in the written material, we do urge that these principles be
set out somewhat more explicitly and in a more consistent
manner with the way in
which such principles are presented in other legislation.
We have reviewed some
aspects of the legislation. It is a complex piece of legislation.
Our assessment is that it reflects many years of effort, many
years of expertise, and that it is essentially a sound and
thorough document. However, as we review the material and look at
it in the light of current aspects in the protection of personal
information, we do have some concerns that it does not adequately
reflect the most recent developments, particularly the
implementation of the federal legislation, Bill C-6, which will
apply to virtually all activities in our industry and in many
organizations in the province, and the proposals for an Ontario
privacy act that would similarly have very broad application to
those activities. We do have some concern about the lack or
apparent lack of harmonization in a few respects-not extensively
but in a few respects. It appears that there is not adequate
harmonization between this legislation and the federal
legislation.
Incidentally, I have noted
many of the comments your committee has heard regarding the
importance of a substantially similar designation under C-6. Our
assessment of that provision under C-6 is that even if
legislation such as Bill 159 or the Ontario privacy act were
deemed substantially similar, many organizations such as life and
health insurers would continue to be subject to C-6 as well as
the other legislation. There would be potential overlap,
potential duplication, and thus the need for harmonization is
critical. That is the key issue or concern that we have in terms
of looking at this legislation.
1530
We are also concerned, or
maybe the word is "confused," about the status of health
professionals who are employed or engaged on a part-time basis by
insurance companies and by other organizations to provide their
expertise in the area of health care but not to provide health
care to individuals. For example, most life and health insurers
do have medical staff, do have trained nurses or physiotherapists
engaged in assisting and developing programs to help an
individual return to work. In that capacity, those individuals
are not providing health care to the individual. They are not in
custody of the information; the insurer is. Thus, we feel that
there should be an exception for those individuals, that they
should not be considered to be health information custodians
while engaged in those activities and that there should be
another provision added to Bill 159 comparable to, I believe,
subsection 2(3), that currently deals with a similar situation
where someone is acting in a similar capacity with an
organization that is subject to the Freedom of Information and
Protection of Privacy Act.
Also, just moving very
quickly, we do have some concern about the comprehensiveness of
this legislation. In our view, it would not protect certain
information in the health care sector if that information is not
viewed as being personal health information. This is of
particular concern to us because, in some instances, that
information could be information that is collected from life and
health insurers. In the submission I mention that details on an
individual's insurance coverage might provide information that
that individual is eligible for reimbursement of a drug claim or
a dental claim because he or she is a dependant of another
individual. That, by itself, would disclose information on the
relationship between those two individuals. In our view, that
information, in many cases, would be sensitive, perhaps extremely
sensitive. We believe it should be protected in some way through
privacy legislation, particularly given the uncertainties
regarding the application of Bill C-6 to the health care sector.
It appears that if any activities are deemed to be
non-commercial, then C-6 would not protect that information
either. So we wanted to draw that to the committee's attention
and to urge that consideration be given to broadening the
comprehensiveness of legislation such as this. Or I guess our
overall preference would be to combine it with the proposed
Ontario privacy act and have a single piece of legislation that
would set forth general rules and would also set out specific
provisions that would be necessary for protection of personal
health information.
Mr Chair and members, that
is a very quick summary of our comments on the legislation. I
appreciate this opportunity to meet with you, and I will try to
respond to any questions you have, either now or
subsequently.
The Chair:
Thank you very much. That leaves us that awkward amount of time.
Dare I try and divide it amongst three colleagues? We've got
about four and a half minutes, so I can ask for a minute and a
half from each.
Mrs
Pupatello: Thank you for coming today. I understand that
some of your member companies have been involved in list
collection and/or purchase of lists or selling of lists. Much of
it may have to do with research that these companies would engage
in to determine outcomes to actuary-type work etc. When that
happens, give me a typical follow-through of data that's
collected and then used for those purposes, or when lists might
be sold to interested parties, that they would be cleansed in
what manner, if at all.
Mr Black:
I apologize, but I'm not aware of any instances where lists of
individuals are sold by our industry. We have a condition in our
consumer code of ethics and commitment to comply with that
consumer code is a condition of membership in CLHIA. That
provision is quoted in the submission but I think the words are
"to protect personal information and to use it only for the
purposes for which it has been submitted." Insurance services are
offered in some cases to members of an association or members of
a defined group. In that case, generally speaking, our companies
would not buy the list; they would work with the association and
make available a mailing or an offering that could then be sent
by that association, for example, to the alumni of the University
of Western Ontario, as I sometimes receive. But I'm not aware of the sale in any
instance of lists of individuals.
Ms Lankin:
A quick comment and then a question. We did hear earlier this
week from an individual who saw a doctor who fraudulently billed
OHIP for services that were not provided to that patient. A
number of people in that community were in the same situation.
One of the individuals told a press conference about subsequently
being denied continuation of his insurance policy. It could be
coincidental, but nothing else happened in his life, other than
some knowledge of psychotherapy, alcoholism and other things
being reported on his OHIP record which were untrue.
Is there anything in your
industry that goes on where the industry attempts to get access
to that kind of information from doctors' records or OHIP
records? That leads to the concern a number of people have raised
that we should be looking at legislation that regulates health
information irrespective of where it is, instead of regulating
the control and access and disclosure of the information by the
health sector. Some people are urging us to include your sector
under this legislation and to actually regulate the protection of
health information wherever it falls in society. Could you
respond?
Mr Black:
I will try, although that is a rather complex area. It's
difficult to comment on the first instance without knowing the
full details of that. There are situations when someone applies
for insurance or someone applies for benefits whereby
confirmation of information obtained from that individual may be
sought from an attending physician or a hospital where the
individual has received certain services etc. But other than
that, information would not typically be sought from the health
care providers.
I'm sorry. What was the
second area?
Ms Lankin:
The legislation as it's now drafted applies to the sector. Some
people are saying, "No. Write legislation that protects
information wherever it is in society."
Mr Black:
It's a very complicated issue, and this is the sort of question
that led to our comment that we feel the legislation should be
updated and should be carefully reviewed to ensure that it
affects recent developments.
Bill C-6 will apply to all
activities within our industry, we're convinced, whether it's
personal health information or other personal information. There
is provision for sectoral rules. There are uncertainties under
C-6 as to whether it does apply to the health care sector, and to
what extent, and thus we feel Bill 159 is essential to fill that
gap.
I hope the information
indicates that we are committed to the protection of personal
information, all personal information in all sectors, public and
private. Our preference would be for a single legislative
approach that would address all information in all sectors. That
is not possible in the current environment in Canada. We believe
the sectoral focus of this legislation is appropriate and that
any issues regarding any type of health information should be
covered within the health care sector, and also that for any type
of information where controls are necessary, those should be
provided under either the federal legislation, as they are, or
under Quebec's legislation, which has been in effect for six
years now, or under the Ontario privacy act that we fully expect
to probably be back here speaking with you on in a few months'
time.
1540
Mr Wood:
Have you had an opportunity to address your mind to the question
of informed consent, which is required in the draft act, rather
than the test of just consent?
Mr Black:
The area of consent is a very perplexing one. I had the
opportunity-and I stress the word "opportunity"-to work with
representatives from various sectors, including an employee of
the Ontario government, as the CSA code was being developed, and
in particular to chair a subcommittee that looked at the broad
issue of consent. Our feeling there was that the nature of
consent varies considerably, and in our view appropriately so, in
different areas.
For example, in the area of
health insurance, I'm not quite sure what word to use, but it's
not implied consent; it's more than implied consent-
Mr Wood:
No, I'm talking about informed consent.
The Chair:
Mr Wood, we've run out of time.
Mr Wood:
I'm not over my minute and a half?
The Chair:
Actually, we are.
Mr Wood:
Not by my watch.
Mr Black:
We strongly support informed consent, and certainly the openness
provision in Bill C-6 I regard as being extremely important, that
information would be available to individuals on what is done
with information.
I just wanted to mention
that in the health care sector a very common situation is that
someone walks into a drugstore, presents either a paper card or a
plastic card to the druggist, and walks out with a prescription.
The druggist enters that information into the computer, the
information is transmitted to the insurer, and the pharmacist's
bill is paid. There is no signature; there is no explicit consent
in that sense. So there are various forms of consent. I fully
agree there should be adequate and indeed superfluous information
available to an individual to know what is done with his or her
information before he or she provides consent.
The Chair:
Thank you very much. We appreciate you taking the time to come
before us here today.
COLLEGE OF OCCUPATIONAL THERAPISTS OF
ONTARIO
The Chair:
Our next presentation will be from the College of Occupational
Therapists of Ontario. Good afternoon and welcome to the
committee.
Ms Jan
Robinson: Thank you. Members of the committee, good
afternoon. My name is Jan Robinson. I'm registrar for the College
of Occupational Therapists of Ontario, and I'm representing both
the college and the council of the college. We're really pleased
to be here and to have
an opportunity to bring our perspectives to you.
You have a copy of our
written response. Just by way of background, our college
regulates around 3,500 occupational therapists in the province.
Occupational therapists practise in a wide variety of
health-related settings, both publicly and privately funded.
Those settings include hospitals, CCACs, community area clinics,
schools, employment settings, industry, health planning and
health promotion, a very broad spectrum, and also include
assisting individuals of all ages, from neonatal to elderly
individuals, in all stages of life related to health service care
under occupational therapy.
I really wanted to just
focus on two particular areas today in my time with you and
emphasize some of our points in that regard. I know that you've
heard from many of my colleagues over the course of the last few
days, and as well in particular from the Federation of Health
Regulatory Colleges of Ontario. I just wanted to emphasize that
we were participants in the development of that particular
position and certainly have signed on to the position of the
federation.
Our remarks are also based
on the fact that we support the intent of protection of the
privacy of health information and we believe this discussion to
be really critical to the public interest.
Our first area of concern
is what appears to be the blanket inclusion of health colleges as
health care custodians. Our concern is that there appears to be a
lack of appreciation of how colleges use health information and
use the information they receive. As a result, the proposed act
inadvertently throws a wrench into components of our mandate. The
college certainly does receive and review health information
internally. The purpose, however, of that information is not the
management, manipulation or disclosure of the information. The
purpose is rather as evidence in a variety of ways to assist in
examining an occupational therapist's practice. We don't generate
health information.
The rules in the RHPA speak
very clearly to the sensitivity of the information that we
receive. Certainly there are confidentiality provisions within
that which we need to work with, and to the highest regard.
Our fear is that the broad
inclusion of colleges as health care custodians serves to clash
one public interest mandate with another. I just wanted to
provide you with examples of where we're coming from around that
particular issue. In particular, they're related to mandatory
reporting provisions of the RHPA.
I'm sure by now you're
familiar that there are two particular ways to mandatorily report
under the RHPA. One is through employer reports. That is the
situation where an individual may be discharged from their
particular practice related to their competency or issues related
to their performance. The second is sexual abuse mandatory
reports, which of course are quite egregious. I know that you're
probably also aware that there was an awful lot of time and
energy in the late 1980s and early 1990s around whether or not a
mandatory provision was necessary for sexual abuse reporting. In
fact, the evidence was overwhelming that that needed to
occur.
I'd like to point out that
our mandatory reports, although they are fewer in number than the
complaints to the college by far, are some of our most critical
investigations. They're some of the most critical that we do.
They are our most complex by far. They are certainly our most
challenging by far. They are also the ones that reveal for us
some of the greatest substandard care that we have to investigate
and look after and deal with. The majority of our referrals to
discipline, actually, come from our executive committee related
to mandatory reports.
It would appear, however,
that section 34(1)(b) under the proposed act, where the clauses
are permissive about the release of information, in fact shields
an individual from reporting where otherwise they'd be required
to do so under the RHPA. Again, our position is that the RHPA is
about the public interest and about protection of the public
interest. So the influence of the PHIPA on our inability to then
maintain that mandate is of concern to us, and the issue of
paramountcy, we believe, needs to be addressed.
Our role, very
specifically, is about safe, ethical and effective occupational
therapy practice in this province. Where elements of the health
care custodian role impair this mandate, we believe changes are
necessary. Not dissimilar to some of my colleagues, we would see
this accomplished either by exemption from the health care
custodian role via regulation or, at the very least, a look at
partial exemption around some of these key roles that we have
concerns about, and further, assuring that the paramountcy of the
RHPA to the PHIPA, where necessary, is taken into account.
Secondly, the piece that I
wanted to raise has to do with our registrants and the ability of
the college to guide and regulate registrants. Currently, as a
regulatory college, we put out an awful lot of material related
to guidance around health information already. We have specific
guidance related to informed choice and consent, release of
documents, confidentiality, security of records etc. So there's a
fair amount of information already there. Further, when we look
at our trends related to complaints, mandatory reports and, in
particular, the practice advice calls that the college receives,
although the majority of our practice advice calls are from
registrants, we receive them from the public as well. I must tell
you that those calls, particularly from the public, tend to come
from individuals dealing with health care providers in the
private sector, and their concern very often is about release,
access and use of their data within that particular sector.
We're very concerned that
this proposed act has deliberately excluded the insurance sector
as a custodian. When I'm talking about the insurance sector what
I mean is auto insurance and the health and life side of
insurance, and I also refer to the Workplace Safety and Insurance
Board. Our belief is that the result of this exclusion really
skews the management of health information and could skew the management in many
ways. We do acknowledge and certainly understand that this sector
will be covered under commercial privacy legislation, but our
understanding is that this government chose to introduce separate
health information privacy legislation because it was not
satisfactorily managed by other bills, such as Bill C-6. We also
acknowledge that bills similar to Bill C-6, whether they be
federal or whether they be provincial, are not set out with
health interests in mind. Their interests are business and
commercial. So we would suggest that if the government believes
that information needs to be protected, it needs to be protected
across all health sectors, public or private.
In our profession, what
this legislation would effectively do in this particular issue of
health information is divide our therapists and our regulation of
this issue in half, with half of them dealing in the public
sector and half dealing with different rules related to private
sector activity.
1550
One of the other ways that
our council has considered it and debated it is that if you're in
a publicly funded environment, so if you're part of a CCAC or
you're part of a hospital, that particular system is looked at as
a health care custodian and individuals are employees within that
sector. Within the insurance industry, for example, that is not
looked at as a health system or a system that deals with health
information sufficient enough to be covered. So what you've got
are the individuals being covered off, but not the system itself.
It's sort of the flip side of the visual.
The other thing that we'd
really like to suggest is that health care is changing. You know
this. The government of course just recognized this by
introducing the new telecare program over the last week or so.
But with telepractice starting to occur, not only within the
province but across boundaries and borders, and with the increase
in multinational health corporations and the potential of those
settling in Canada and how we're utilizing those, we're really in
a position where we believe that this legislation needs to look
not just at what we had yesterday or what we have today, but
where we're going to be going in the next five to 10 years, with
technology and the mobility of professionals and how that will
affect the Ontario public.
Again, I mentioned earlier
that we provide guidance to our registrants to ensure public
interest. If we were to be writing guidance around the protection
and use of health information, and we presume and we carry this
through to its fruition, two or three years down the road what
we're looking at is a document that includes guidance under the
RHPA, guidance under this particular act, guidance under the
Freedom of Information and Protection of Privacy Act, something
under consumer and commercial relations here in Ontario, and Bill
C-6. That's a very fragmented way to look at a very important
issue from a health care provider perspective and from a consumer
perspective. Our experience and logic would say that if we're
going to divide it up in that way, it's probably ungovernable at
best and creates confusion at best. Many providers practise in
different sectors, not just in one.
An example of consolidating
that would include the consent piece, how we've looked at consent
in this province. Although not perfect, it looks at
consolidation. Another example of how we've looked at
consolidation would be the Regulated Health Professions Act,
where there were 50-some-odd ways in which we legislated health
providers for a number of years, and over 10 to 15 years studied
about how we looked at consolidating that under one act.
We suggest that if health
information is seriously important enough to safeguard, then it's
important that the rules should apply across those sectors that
manage it.
That concludes my remarks.
I commend my report to you for your further consideration. Thank
you for the opportunity.
The Chair:
Thank you very much. That leaves us about two and half minutes
per caucus. This time I guess we'll begin with you, Mr Wood.
Mr Wood:
Do you have the power to subpoena documents now?
Ms
Robinson: We have the power to summons materials, yes,
under the act.
Mr Wood:
Who does the summons come from?
Ms
Robinson: We would seek a summons through the court
system, through the typical legal process.
Mr Wood:
For the sake of discussion, suppose that we were to agree with
some of your suggestions revolving around the relationship
between the regulated health act and the draft act we have before
us, and suppose we said you have to get a subpoena from a court
if you want to access anybody's health information without
consent, would you be able to perform your functions under such a
regime?
Ms
Robinson: I guess part of the issue would be dependent
upon the kinds of circumstance available. I'm trying to think of
the kinds of scenarios, but partly it might depend on timing.
Part of the issue might be related to that. There may also be
issues related to the particular kind of investigation that we're
looking at doing.
Mr Wood:
If I could jump in, we are moving toward 24-7 availability of
search warrants. Assuming you had 24-7 availability of the
warrants, would you be able to function under such a regime?
Ms
Robinson: Given that we're a small college, my
preference would be to provide a written response back to you on
that because I would like to have the opportunity to ask our
legal counsel around situations that we might not yet have
experienced in order for me to make a better-informed comment.
I'm happy to do that, but I would prefer to do it in a more
informed way.
Mr Wood:
That would be fine. Simply send a memo to the committee and it
will be distributed among the members. Those are my
questions.
Mrs
Pupatello: I was interested in your comments around the
insurance companies and other firms that wouldn't be included in
this. I was looking through the various sections of disclosure,
for example, and one of them has a particular clause of disclosure and
when you can disclose. One of them says "fee for the purposes of
obtaining payment for health care provided to the individual." I
guess, looking back, it's not included in terms of custodians,
but they also aren't the deliverers of health service, and any
that would be I'm guessing have been listed. Tell me what your
concerns are around that group not being listed as
custodians.
Ms
Robinson: What happens currently is that insurers
utilize occupational therapists really broadly, so they are hired
as independents. The problem is that the insurance system often
expects its reports to be directly sent back to an insurer. What
you have then is a client who wants direct access to their
information, and deserves to have access to their information,
but gets caught in the system of an insurer that isn't
necessarily releasing or takes a long time to release, or is in
fact very paternal about their release. Their release is more
indirect: they won't release directly to a person but they might
release to their physician or they might release to another
individual.
Mrs
Pupatello: There's no authority, in other words, for
them to have to release if they don't choose to release.
Ms
Robinson: No. So what happens, for example, for
occupational therapists is that we have overriding provisions for
expectation for release. But then what you've got is a system
that's out of sync. So everyone's working on slightly different
rules and what happens for consumers is that they feel that they
are caught, and they're not clear on what they're dealing with,
even around their own claims. That's been our experience, and
distress-for example, an occupational therapist must submit a
treatment plan. We're right in the middle of doing auto insurance
education across the province, and some of the things I heard
around this is that treatment plans are submitted but not
necessarily shared with the client, so then you have a provider
that's going out to provide the treatment that they're being
asked to by the insurer with a client who hasn't yet heard what
the treatment plan was about in the first place.
So it's those sorts of
pieces that we believe that if in fact systematically we looked
at health information as just clearly health information, period,
then what you'd have is transparency and the ability of people to
access what is rightly theirs in the first place.
Ms Lankin:
Following up on Mr Wood's question, you've given an undertaking
to have legal counsel provide a response to the committee about
what concerns you would have if you were compelled to use a
warrant to access information. This question has come up a few
times. I actually am not sure where based in the concerns
colleges have raised that query comes from, so I want to ask if
you would ask legal counsel to inform us if there have been any
problems or complaints lodged against the college for the way in
which you have accessed information. Under the RHPA it was
envisioned that a very specialized group involved in
self-regulation must have the right to enter premises and seize
records in order to undertake the investigation. And the triggers
for that are set out in the legislation. So I'd like to know if
there have been any problems with that system, if there have been
any complaints about how it's been exercised and what additional
protections or benefits we would have from involving the
judiciary or court proceedings in issuing a warrant.
Ms
Robinson: Fair enough. I know we haven't run into
anything, but I'll ask, sure.
The Chair:
Thank you very much. We appreciate you coming before us here this
afternoon.
1600
ONTARIO FEDERATION OF COMMUNITY MENTAL HEALTH
AND ADDICTION PROGRAMS
The Chair:
Our next presentation will be from the Ontario Federation of
Community Mental Health and Addiction Programs. Good afternoon.
Welcome to the committee.
Mr Chris
Higgins: Thank you very much. I certainly appreciate the
chance to address the committee on the matter of the bill before
us. My organization represents 230 agencies across Ontario that
provide mental health services and addiction services to people
here in our province. At any given time we would see about 50,000
people a day.
We understand that health
information is a critical component of the delivery of health
care, that is, the timely and accurate provision of necessary
information is necessary to do a good job. There are lots of
simple examples of this and I'm sure you're very aware of them.
PHIPA or something like it is necessary to get at that problem
because right now information flow is anything but effective.
As well, in the mental
health and addiction world, the therapeutic relationship between
staff and a person, an individual, is a very critical component
of service. In fact, if you don't have that therapeutic
relationship, you cannot provide service. It may or may not be
necessary to have a good working relationship if you're doing
some procedures in health care, but in mental health and
addictions, if the person does not trust and feel safe with their
counsellor, their therapist, there is simply not going to be any
service delivered.
The issues that people talk
about with a therapist are intensely personal, intimate and often
deeply disturbing. People are experiencing stuff they've never
experienced before, or perhaps they have, but it strikes them at
a very profound level. People don't like to talk about that with
anybody. Sometimes they don't even like to acknowledge that it's
happening. That's always the case, or at least often the case,
with mental health, and often the case with addictions as well.
There is a denial or a tendency to try and hope the problem away.
When someone finally comes forward to talk to somebody about that
problem, they need to feel they can do that in safety. If they
don't feel safe, they simply won't do it.
That's the other trade-off, the other element in
the quandary we face. We need to have good information to provide
good health care, but if we facilitate the transmission of
information in such a way that we convey to someone a sense of
insecurity, then we won't be able to provide health care, at
least not in mental health and addictions, and I suspect in other
places.
From the consumers'
perspective, they have to develop a relationship in which they
trust the person, share that information and know that it's not
going to rebound in the form of stigma, discrimination and so
on.
Right now the mental health
world, that is, the community mental health sector, functions in
a sort of common-law understanding under the Mental Health Act.
We're not listed in the act as scheduled, that is, we're not
scheduled in the act as having their forms and procedures apply
to us, but we voluntarily comply with that process. Typically, to
give any information to anyone, a community mental health service
provider must have a form 14 that is signed to release that
information for an express purpose to a particular person. That's
the basic understanding we work under now. So we're going from
that understanding, where a client is able to say, "I'm not
comfortable with you communicating," and when they become
comfortable, when they develop a level of trust and they are
prepared to sign a form 14, then the information can move between
the two parties named in the form. That's what we have.
What we're proposing here
is something that is very different. We're proposing that once
the health information custodian knows it, whether they even
commit it to writing or not, they can convey it to any other
health information custodian for the purposes of care, broadly
defined. In the mental health world and for that matter the
addiction world, that can be very broadly defined.
We'd like to suggest an
interim between the form 14, which is often arduous and makes
moving information very difficult, and a situation that would
result in people being very reluctant to give you the information
in the first place, rendering the services almost impossible.
What we would suggest is that the basic provisos you envisaged in
Bill 159 be applied only to name and identification of the
client, that is, a registration nucleus of information. Any
health care custodian could acknowledge that they have as a
client any given person whom they are serving but that
information is all they would be able to acknowledge without
consent. That would allow a couple of key things to happen. It
would allow agencies to know who is working with a client and it
would allow GPs to know if another GP is working with the client.
So it would allow for many of the needs-to-know to be satisfied
for the purposes of management but it would stop shy of a
wide-open scenario.
We would suggest that we
add something similar to form 14 but somewhat broader. For the
sake of having a name, I've called it a consent to disclosure of
personal health information certificate. If someone signed such a
consent, we would propose that that would allow the custodian to
share information with the other named party in the consent. The
other named party in the consent could be a single entity or a
network of entities.
We would propose that
consent would not be restrictable, that is, once you were able to
speak about that person's experience, the person could not rule
out of order parts of the file and only leave other parts
consentable, if you will. So it would be a broad consent.
It would exist for the
length of the client's working relationship with any of the named
health information custodians.
What we are proposing, in
effect, is something between form 14 and a very broad consent;
something that requires that the person feel enough trust and
develop enough trust in their relationship that they're prepared
to allow that information to move.
On the same basis of need
to trust and feel safe to disclose information in a therapeutic
relationship, we would like to draw your attention to section 36.
Section 36 is a section in which agencies have the discretion of
establishing policy that would allow a worker to decide if there
are reasonable grounds to suspect that an offence has been
committed by the client and then report that to any of a number
of named officers under various acts.
We have some serious
reservations about that, starting with the basic reservation that
it is not anything to do with health care. It is about reporting
various breaches of the law, no matter how serious or not
serious, to other officers who are charged with dealing with
those laws. It is not about delivering better health care. It
relies on agency policy to establish a standard for disclosure
where there is discretion, and agency policy is no substitute for
the law. Agency policies can be changed at every board meeting,
if you want, and they are not as strong as the law.
Second, it relies on
therapists and agencies to understand what reasonable grounds are
in a scenario where the information provided with respect to a
person's behaviour experience is somewhat equivocal. People with
serious mental illness or people who have problems with substance
abuse or addiction experience things that we can't always verify
are real. Who is to know what's real or not and how we could
establish "reasonable"? Secondly, reasonableness, as an agency
policy, gets a lot more difficult to defend if something goes
awry after the fact. It may seem reasonable before the fact, but
after the fact it may not be judged so.
What offences should be
reported? This law would allow any offence to be reported,
anything from loitering, to failing to put in their tax return,
to more serious offences. We don't think we should have the
discretion to report such things unless there is a risk of harm
to self or others, and that is actually covered elsewhere in the
legislation.
If the client feels that we
could talk to any officer of various acts under this
discretionary provision, they will leave out information that we
will need to know. That is, on the fear that we're going to
report them to whomever, they simply won't tell us and we will
not be able to do our work.
Finally, that discretionary ability to report
somebody under various acts allows a very interesting power
relationship to develop, where a person comes in, discloses
various trials and tribulations and experiences, and then the
worker may or may not report them at their discretion. I don't
think that's an appropriate level of relationship in that the
worker acquires a certain amount of discretionary power over the
client which, again, will not serve a therapeutic relationship.
So we ask that section 36(g) be struck.
With respect to my written
remarks, there are a couple more points about putting the onus on
health care providers, government and bureaucracies to deliver
accurate health care records, not on the client. I think the
person should be relieved of that responsibility and the
bureaucratic apparatus should have it. Fees and procedures for
remedying mistakes to records ought not to be charged to the
person, since any mistakes that may have been made were not made
by them and they may or may not be able to afford the fees. The
onus should be on bureaucracies and management structures to
correct the records.
That's all I'd like to say
in written remarks.
1610
The Chair:
That leaves us about two minutes per caucus. This time we'll
start with Ms Pupatello.
Mrs
Pupatello: I wanted to go back to section 36(g) as it's
worded. Can you think of an instance where it would be necessary
and reasonable that medical records would be accessed without a
warrant?
Mr
Higgins: Yes, I do, if there is a risk of harm to self
or others, but if there is not a risk of harm to self or others,
then records should not be available.
Mrs
Pupatello: Fraud?
Mr
Higgins: There are other means to conduct investigations
to determine whether a warrant is needed. Once a warrant is
provided for, section 36(g) doesn't apply anyway.
Mrs
Pupatello: Wouldn't you have to have some idea before
you could get the warrant issued to know there's something to get
a warrant for?
Mr
Higgins: Yes, you would, but fishing around in files
without having a reason to do so would not be appropriate.
Mrs
McLeod: One quick question about your recommendations on
the signed consent form. You would specify the health information
custodian or custodians who may receive the personal health
information. I tried to think about how that would apply to
somebody on a community treatment order, for example. Would it
not be important for all the members of, say, an ACT team to have
access to that individual's health information, yet it would be
very difficult to know who the members of that crisis response
team might be in order to specify that they're the individuals
who can have access to the information?
Mr
Higgins: An ACT team is employed by one corporate entity
under the current provisions, so all the members are entitled to
share information among themselves.
Mrs
McLeod: So the consent form would specify the care
provider as an entity, not individual care providers.
Mr
Higgins: Yes. If I'm running a housing program, which I
used to run, and there's a client and an ACT team and we have
this certificate of consent, then we would be able to communicate
freely between us for the purpose of delivering good health
care.
Ms Lankin:
I appreciate the suggestion you're making around the certificate
of consent. It's one of the things we're grappling with, what the
right balance is. I don't think we really fully understand yet
the relationship between this legislation and the Mental Health
Act. We've had some presentations trying to draw our attention to
what protections will be lost that people currently enjoy under
the Mental Health Act with respect to the privacy of their health
information.
You did say that you're
looking for something in between this legislation and what I
think you referred to as the rigorous approach of form 14. I
understand some of the concerns of sharing information from
facilities and psychiatrists to community mental health, and
there have been barriers there. Within the facilities' and
psychiatrists' side of things, could you tell us what the
problems are with the form 14, or is it primarily between those
entities and community mental health that the problems have been
seen?
Mr
Higgins: Between psychiatrists and other
psychiatrists?
Ms Lankin:
Well, you said form 14 is too rigid. Why is it too rigid?
Mr
Higgins: If it was strictly applied, you would need a
form 14 for every single time you talked to the third party, who
specified specifically the objective and purpose of that
conversation and had it written. If you have a form 14 and I call
you today with it, two weeks from now if I wanted to talk about
the same thing, technically I probably should get another form
14. If enforced to the full degree of rigour, you would have
stacks of form 14s.
The usual way to provide
service in health care, including mental health, is a network of
agencies. You have labs, pharmacies, physicians, rehab folks,
mental health workers. That network needs to be able to move
information effectively without each and every one of them
needing a specific form every time they want to talk to another
one. That's the current strict interpretation we would have to
apply. We struggle to do good mental health care when we're not
actually able to convey information very easily. I've certainly
had experiences as a direct service provider where I have
literally had no idea who the other agencies were until I
eventually developed a trust relationship with the client so they
would tell me. Then I didn't know what they were doing until I
developed enough of a relationship that they would release the
information.
Ms Lankin:
How does that differ from-
The Chair:
Sorry, Ms Lankin. You're out of time.
Mr Toby Barrett
(Haldimand-Norfolk-Brant): With respect to community
mental health clinics, I understand there are no legislative
rules at all with respect to privacy. I'm assuming, say, with adult mental
health clinics across the province, a lawyer who is working on a
custody case can pick up the files on a client and take them to
court on behalf of the husband or the wife. Assuming that's been
going on for about 20 years, what kind of impact has this been
having on people showing up for counselling? How many people drop
out once they find out their records can be picked up by a
lawyer?
Mr
Higgins: First, it's not quite that easy. Although we're
not named on a schedule, we generally comply with the form 14
rigour and we will usually seek legal counsel and ensure that
there is a process that means the file is necessary or at least
the elements required are necessary for the conduct of the court.
Sometimes that means a hearing that's in camera so it can be
determined whether the information is needed. We do try to
prevent unnecessary file transfers with a fair degree of success,
since the courts acknowledge that unnecessary information doesn't
serve the interests of justice.
Mr
Barrett: Would that be your association or the
individual clinics that do this?
Mr
Higgins: The individuals do it, although our association
has provided them with some training stuff. When it comes to
addictions issues, if you have an addiction to an illegal
substance, the day you walk in the door and acknowledge the
addiction you are automatically breaching the law, which is why
36(g) would allow us to turn in every single client we have in
any program who comes in voluntarily to seek addiction care.
That's just not going to work. No heroin user, no cocaine user,
no user of any illicit drug will go to a clinic if the clinic can
just voluntarily supply the file to the police. You will not get
any people seeking help or moving forward unless they do it
through court-mandated things after they go to jail, and surely
we can't want to do that. We need to find a middle ground.
If the person comes into
care, then the network would know they're in care, so we could
know that that person was seeking care. If we wanted to know more
about that, we would need a form, and that would provide the
necessary rigour so the person will hopefully trust us enough and
develop that relationship enough that they would sign the
consent.
The Chair:
Thank you very much for coming before us this afternoon. We
appreciate your taking the time.
1620
ONTARIO ASSOCIATION OF MEDICAL LABORATORIES
The Chair:
Our next presentation will be from the Ontario Association of
Medical Laboratories. Good afternoon and welcome to the
committee.
Ms Virginia
Turner: Good afternoon. I am Virginia Turner, chief
executive officer of the Ontario Association of Medical
Laboratories. In addition, I would like to introduce Perry
Brodkin and Graham Brown from the OAML who are accompanying me
today. I am pleased to have the opportunity to address this
committee today regarding Bill 159.
The Ontario Association of
Medical Laboratories, or OAML, as we are known, is the common
voice of Ontario's community-based laboratory corporations. Our
members served more than 13.5 million patients last year by
providing more than 94.5 million medical laboratory tests,
representing about 70% of the objective information that
physicians, nurse practitioners and midwives used in the
diagnosis and treatment of patients. To that end, community
laboratories are an integral part of the health care system. In
fact, community laboratories are often referred to as the glue
that holds the system together. As an organization, the OAML
represents community-based laboratory members and holds the
opinion that privacy is part of our everyday mission and
value.
The OAML is intrinsically
linked to the health care system and strongly supports the
introduction of health privacy legislation. In our view, properly
written legislation should provide patients with a guarantee
regarding the confidentiality of their personal health
information. It should clearly define in legislation the
individuals or bodies who may collect, use or disclose that
information. Additionally, effective legislation must provide an
avenue to an individual should their right to privacy be
breached. While there is great need for legislation to govern the
increased use of electronic exchange of health information, such
guarantees must be legislated and maintained. It is the position
of the OAML that Bill 159 does not clearly guarantee those areas.
Before I continue my direct comments about Bill 159, I will make
a few comments on Bill C-6, the federal bill.
Last year, the OAML was the
only provincial body from Ontario to appear before the Senate
standing committee on social affairs, science and technology in
regard to the federal bill, Bill C-6, known as the Personal
Information Protection and Electronic Documents Act. Two
principal concerns were brought to the attention of the committee
as they related to health privacy: the issue of patient consent
and the distinction between commercial and non-commercial
activity. I will be filing a copy of the brief of that
presentation with my remarks today. But suffice to say, a clear
issue for us at that table was the unique partnership that our
members have in relation to the private and public sector
arrangements in hospitals where there was ambiguity in the act at
the federal level, and for us, that directly impacts the working
relationship in Ontario.
Due to the testimony of the
OAML and other health care sector witnesses, the Senate committee
made the unusual recommendation to have two amendments added to
Bill C-6: a definition of "personal health information" and the
suspension of the application of that bill to the health care
sector for a period of two years. These important amendments
acknowledged the concerns brought forward by the health care
community regarding privacy and provided the federal government
with the opportunity to consult with affected parties.
Now I will return to the bill that I am here to
discuss, Bill 159. Again, the OAML supports the need for a health
privacy bill but we believe there are a number of serious
weaknesses with Bill 159 as it is currently written and we have
some recommendations as to how that might be addressed.
Therefore, I urge you to
make the necessary amendments to improve upon the foundations of
this bill before sending the bill back to the House for final
consideration. Indeed, it is our view that it would be a lost
opportunity for this committee not to suggest the necessary
amendments.
Specifically, subsection
3(1) of part I of Bill 159 provides that any health information
custodian who operates more than one facility, "shall be deemed
to be a separate custodian with respect to personal health
information of which it has custody or control." The OAML is
concerned that this will be a burdensome requirement on community
medical laboratories given that they are centrally operated
corporations. Subjecting their more than 400 specimen collection
centres scattered across this province to appoint a designated
custodian for the purposes of the act would be a duplication of
human resources. We are also concerned that such an approach
could result in inconsistent application of policy related to
confidential patient records.
While we realize that a
regulation can be made specifying that subsection 3(1) does not
apply to community laboratories and specimen collection centres,
we are concerned that such a regulation may not be made at the
time that Bill 159 comes into effect. Accordingly, we are seeking
a specific amendment to section 3 that would specify that
subsection 3(1) does not apply to laboratories and specimen
collection centres.
Under the heading of broad
disclosure, the OAML strongly holds the belief that personal
health information should primarily be used as a tool to ensure
the health and well-being of the individual and given the highest
degree of privacy and protection. The inclusion of all
organizations involved in the health care sector under the same
legislation is one we support wholeheartedly and which we think
recognizes the continuity of medical care that an individual
experiences in the health care sector.
While recognizing the need
of health care practitioners to share vital information in their
efforts to treat health issues, we are concerned about the broad
disclosure allowed under the legislation as it is currently
written. We believe that the proposed legislation must be an
enabler of health care. It is our considered opinion that broad
disclosure of personal health information, as allowed in part VI,
will be permitted without the consent of the individual,
particularly in relation to the management of the health care
system. As it is currently written, a direction could be issued
for a community laboratory to disclose confidential information
it has gathered in performing its diagnostic role to somebody
other than the ordering physician.
The OAML is very concerned
with the broad authority created under this bill for the
introduction of regulations which could fundamentally alter the
intent of the bill. Our review suggests that in many important
areas, the bill includes the authority to make a regulation to
either clarify or revise a process set out in the legislation.
This bill, in our view, should have restricted use of the
amending tool known as regulations. As the regulation-making
process is not visible to the public, the OAML believes the
current scope and number of areas in which regulations can be
made should be dramatically reduced. It is directly related to a
concern for the protection of health privacy that we propose that
a transparent process, open to public comment and scrutiny, be
established for any regulatory changes to be introduced. In
essence, for the purpose of this bill, the use of regulation
changes must have a built-in mechanism to afford public
consultation, especially with affected parties.
In the area of consent, the
OAML believes this bill must set out clear rules on consent when
information is used for purposes other than direct medical care
and public health. Further, we believe the legislation must allow
for a balance between personal privacy and process. We urge the
members of the standing committee to carefully review each
potential area of disclosure to determine if such a disclosure is
warranted or necessary, given the potential loss of privacy.
1630
In conclusion, we
appreciate and accept that a bill such as Bill 159 must of
necessity be a law of general application, applicable to all
health care providers. We would ask that certain provisions in
the bill be specifically tailored to recognize the unique role of
certain health care providers in the health sector, including the
unique role of community-based laboratories. To that end, we
would recommend that, at a minimum, the amendments we have
outlined here today be incorporated into the bill, and we would
commit to work with you on those. A Personal Health Information
Privacy Act that is so specifically tailored would, in our
opinion, be a better bill and would further the purposes that you
have so clearly articulated and set out in section 1.
The board of directors of
the OAML has recently recommended to its members the creation of
positions directly responsible for personal health information
privacy. The association is well aware that at least one of its
members has already embarked upon this ambitious program to
address privacy issues by establishing a director of privacy
position. We expect that other members of the association will
follow suit in the near future.
Thank you for the
opportunity to present on this important matter and we wish you
the best of luck in your deliberations.
The Acting
Chair: I wish to thank the OAML for your presentation. I
think we have a little over two minutes for response.
Ms Lankin:
Thank you very much, Virginia. I appreciate the presentation.
It's nice to see you again. Not having your written submission to
follow along with and it being late in the day, I got the last
couple of points you made but I've already forgotten the reasons
why you were
recommending exemption from subsection 3(1). Could you please
explain that to me again, and I might then have a quick question
with respect to that.
Ms Turner:
We were afraid, as it is written, and the interpretation of our
legal counsel and others is that it would require each specimen
collection centre-and in fact we have 412 across the province-to
have a specific person there delegated with authority to keep
records and ensure all the privacy records would be held. What we
said in terms of understanding this issue is that you have to
think about a specimen collection centre as usually having one or
two staff there, and we wanted to make sure that the people who
really owned those specimen collection centres and ran them had
the authority to do that and kept consistent records there.
Ms Lankin:
If the central lab owner is the health information custodian, the
laboratory medical technologists who are taking the specimens in
the specimen labs out there, the satellite labs essentially, are
employees of and subject to all the rules of employees of a
health information custodian?
Ms Turner:
That's right.
Ms Lankin:
Thank you. I understand.
Mr Wood: I
was wondering if you had a chance to consider the test on the act
of informed consent as opposed to simply consent. Have you
addressed your mind to that issue at all?
Ms Turner:
Could you repeat the question?
Mr Wood: I
was wondering whether or not you had addressed your mind to the
test in the act of informed consent, as opposed to simple
consent. Have you addressed your mind as to whether or not that
would create any difficulties with respect to the work that you
do?
Ms Turner:
This is one of the issues that we were so concerned about with
Bill C-6 in Ottawa, so we have given a lot of consideration to
it. Perhaps the best way to explain it is that a physician is the
person who has direct contact with the patient and so they have
already gotten consent to send the person-me, you-to a specimen
collection centre to have a particular test done. So we really
don't have to do that because it has been already done between
the patient and the physician.
My counsel is telling me
that we are the agent of the physician, which is a much better
term to use. In essence, when a physician orders a requisition,
we basically provide the service on behalf of the ordering
physician or nurse practitioner.
Mr Wood:
The question of consent doesn't really, I gather, engage you very
much one way or the other.
Ms Turner:
Not today, but that is our worry, as I alluded to, in terms of
the federal bill and why we were so concerned and asked for
clarification. Because in Ontario we have many partnerships of a
medical laboratory which may in fact have the management
arrangement for a laboratory in a hospital, under Bill C-6, we
would be considered commercial activities for the purposes of
law. We are concerned that in a hospital setting, where one of my
members may manage a laboratory for a hospital, would we have to
get a patient's consent in a hospital every time a physician
indeed asks for a test to be done in that lab and that lab may be
operated by one of my members. To us, that's still really
unclear. But thank you for your question.
Mrs
Pupatello: That was my question, that once the private
labs got into the hospital setting, what changed in terms of how
the lab does its work in this regard? It's a relative novelty
over the last, say, five years that the private labs actually
moved into the hospitals. Has anything changed at all?
Ms Turner:
I think that's kind of out of the scope of what I feel I probably
can address today properly. I believe that certainly the work is
being done and it's being done well, that people are happy with
those arrangements.
Mrs
Pupatello: Has it changed their methods of data-
Ms
Turner: No. The same arrangement of one of our members
in any one of its collection centres and the same high standards
would be there in a hospital environment as well.
Mrs
Pupatello: Do you transfer any results of tests via the
Internet, e-mail, telephone? How do you give results?
Ms
Turner: As one of our physicians often tells me,
"Virginia, we do it by phone, we do it by fax, we do whatever it
takes," in order that a physician gets the response they need in
order to treat their patient.
Mrs
Pupatello: Do you have any concerns over privacy with
the onset of additional Internets or bouncing it off the
satellite or something?
Ms
Turner: It's certainly a larger discussion for another
day and we continue to work with those individuals who are trying
to work in this area. We've been long involved in the areas of
the impending smart system in Ontario and lab information
systems, so we continue to be vigilant, we continue to work in
that and to ensure the protection of patient information.
The
Chair: Thank you very much for taking the time to appear
before us here today.
FRANCES TEXTOR
The
Chair: Our next presenter will be Ms Frances Textor.
Good afternoon and welcome to the committee. Ms Textor, it's
protocol for us, when it's an individual who might not have
experience presenting before us, that we like to read something
into the record. I understand that our next presenter after you
is also an individual and he's in the room, so to kill two birds
with one stone, while the MPPs themselves enjoy parliamentary
privilege and certain protection, pursuant to the Legislative
Assembly Act, it's unclear whether or not these privileges and
protections extend to witnesses who appear before committees. For
example, it may very well be that the testimony you have given or
are about to give could be used against you in a legal
proceeding. So we caution you to take this into consideration
when making your comments. In other words, govern yourself as if
you didn't have
parliamentary protection. With that on the record, the floor is
yours.
1640
Ms Frances
Textor: My name is Frances Textor. I'm a housewife, a
health care consumer and an avid reader of newspapers, with an
interest in health care issues.
I wish to discuss two
very important points relating to Bill 159. The first is how
observers and recorders of personal health information may be
lacking and how inaccuracies in their records and documentation
may negatively impact upon their patients' assessments, treatment
plans, diagnoses and present and future treatment. Patients'
families are also affected.
The second is how medical
systems are lacking accountability to patients and how they also
put patients at risk by virtue of inaccurate data.
Observers and recorders
whose documentation may negatively impact on patients; the
negligent, non-recovered addicts and the unstable-their records
may be absent, incomplete and flawed-the biased and prejudiced;
the unethical, ie, who edit and censor, delete, remove and/or
destroy records, ie, muzzlers of whistle-blowers.
Health care workers
within a roster system for a health maintenance organization-HMO,
corporate power-who are assigned X amount of dollars for each
patient yearly, with a large number of patients, who get to keep
the money left over, not used up for each patient's care at the
end of the year, might use the personal health record or
computerized database to rule out the disadvantaged, vulnerable,
seriously ill, needy, disabled, infirm and aged to select young
and healthy patients for personal monetary gain.
HMO custodians of
personal health information may charge excessive fees to patients
for a copy of their record and may control access to patient
data; sellers of personal health information and also the selling
to tertiary sources for computer data linkage; muzzlers of
whistle-blowers who threaten and abuse health care professionals
who report and expose the workplace violations of security,
health and safety; providers of substandard patient care who lack
adequate training and expertise and those who lack the necessary
education and skills re privacy, ethics and communication skills;
those who invalidate the patient who supplies his or her personal
health history, signs and symptoms, ie, leave out the recording
of the patient's input-this concern may include professionals
whose code of conduct encourages non-disclosure of patients'
complaints re professional colleagues in the document-health care
providers and custodians of medical data who deny the patient
basic information and clarification of their record; those
convicted of a criminal offence may be dishonest in their
documentation; those who do not secure, protect personal health
data-this concern would also include spies who jeopardize
individuals' privacy-insurance representatives and custodians of
the client-patient records who mistreat and use unfair practices
at times with patients and clients, threaten, intimidate, harass,
coerce and give uninformed consent; hidden agendas of insurance
representatives who misrepresent their real purpose to gather the
clients' personal health data, not to help the client but to win
the insurance claim case, and those who want to stop the
mediation process by threatening the client with exposure of
their personal health records to the public record.
Restricted individuals,
by means of the capping of fees, are hampered in their efforts to
provide thorough patient care and documentation. Medical systems
lack accountability and put patients at risk by virtue of
inaccurate data.
The complaints and
discipline process of the CPSO: KPMG Consulting, LLP is currently
conducting an independent review commissioned by the Ministry of
Health of the complaints and discipline process of the CPSO.
Fewer than 4% of the complaints ever make it to discipline. On
June 8, 1998, Georgina Hunter, an Ontario citizen, in her Queen's
Park release, asked for an independent review. This video is free
from Queen's Park.
OHIP fraud squad
investigation process: patients who lodge a written complaint to
this body re their doctor are further victimized. They do not
receive a response. They are not permitted to attend the hearing
re the doctor. They are instructed to search the newspaper daily
to see if their doctor was charged. They cannot get their
erroneous health/OHIP record changed.
Informed consent:
patients need informed consent re sharing of their health record
and treatment. In order for the patient to have informed consent
as a consumer of medical care to select the best choice of
treatment and care by a practitioner, the patient requires
information regarding the following: criminal record-CPSO needs
to obtain a police check rather than ask the doctor whether he or
she has a criminal record, ie, Dr Jacquelyn Robinson-problems,
complaints, malpractice, negligence charges, ethical concerns,
ie, the track record, civil proceedings, bonding. As these
individuals are in possession of and are the custodians of a very
valuable commodity-health data-they should be bonded.
Foreign-trained background check: Dr Jacquelyn Robinson, Dr
Death, who I believe trained in South Africa and had been
practising out west. Professional qualifications and ability: to
date no doctors criminally convicted of OHIP fraud have lost
their licences, according to the Toronto Star documentation that
I read.
Doctors' malpractice
insurance: it is a conflict of interest for citizens' tax dollars
to pay 50% of doctors' malpractice insurance. Bill 159 would
permit abusive and/or negligent doctors to access the personal
health information of patients they have harmed. For this reason,
it would be contraindicated for doctors to act as the gatekeepers
of patients' health data, ie, of the computerized personal health
information database.
Privatization: HMOs'
primary purpose is to make money and be accountable to
stockholders, not to the patients. HMO roster systems tend to
abuse the patients by forcing rigid contracts, controls and rules
inhibiting access to
quality patient care to save money for the corporation.
Cutbacks to medical care:
the result is less and less time for health care practitioners to
provide the quality health care that is needed, to function
effectively and to document patient care.
Recommendations:
(1) Stop the cutbacks and
stop the abuse of our health care providers. Give support,
improve working conditions, give credit for work well done, pay
health care workers what they are worth, listen and respond
promptly to their concerns-pension, security, education
expenses-and learn by the wisdom and instinctual abilities of the
experienced health care practitioner, or it is likely stress and
illness will occur, affecting health care providers and their
families, and ultimately the patients suffer.
(2) Patients must be
given informed consent re the pros and cons of Bill 159 re
treatment and the choice of practitioner.
(3) Independent bodies
investigating professional misconduct.
(4) Professional bodies
of health practitioners are more accountable to the public and
involved in health education.
(5) Instruct the patient
to sign a bill for receipt of services rendered, and the
practitioner sends a copy to OHIP, a cost-effective method to
monitor OHIP practitioner fraud; patients' privacy
maintained.
(6) Doctors maintain
their Hippocratic oath by obtaining a consent from patient before
release of personal data.
(7) Doctors pay their own
malpractice insurance to avoid conflict of interest.
(8) Education as an
ongoing requirement of health care providers, with audits of
professional standards, education and skills re
certification.
(9) Involve the patient
in their care by consulting with the patient and asking for their
help.
(10) Immunity for
whistle-blowers.
(11) Strict controls
governing insurance companies to prevent conflicts of interest
and the complaints that complainants make regarding not being
treated in a proper fashion.
Bill 159 is harmful to
patients and individuals. It is fake and full of loopholes. Using
the words of Canada's Privacy Commissioner, George Radwanski,
quoted in the Toronto Star, page A22, February 9, 2001, "Scrap
it."
Bill 159 permits in an
instant our personal health information on the Internet to be
everywhere and anywhere, and if it's erroneous we can't change it
for an eternity. Everywhere, anywhere, quoted in newspaper
article, "Electric Vision-Bigger Profits and Fewer Jobs," Frank
Zingrone, York University professor, communications, co-author
with Eric McLuhan, Essential McLuhan.
Question: was our Ontario
Integrity Commissioner involved in the drafting of Bill 159?
Treat all individuals
equally re criminal offences. No one should be above the law.
Specific consequences for
those who abuse and coerce patients, and those who act
unethically.
Save medicare, or just
say not to privatization.
The
Chair: Thank you very much. We appreciate your quite
varied presentation here before us today.
1650
MARIO PALISKA
The
Chair: Our next presenter will be Mr Mario Paliska. Good
afternoon. Welcome to the committee.
Mr Mario
Paliska: Good afternoon, ladies and gentlemen.
The
Chair: You did hear my caution that I read into the
record before that last presenter?
Mr
Paliska: Oh, I know that, but those people obviously
cannot hide. They're not criminals, right?
The
Chair: Oh, no. It's a caution to you that while we're
protected for anything we say in this room, no one else is; or at
least the courts have not decided that. So govern yourself
accordingly.
Mr
Paliska: I've decided to show what they really are, what
some doctors can be actually, how they caused me a lot of
troubles.
The
Chair: I'm just making sure that you heard my caution
earlier.
Mr
Paliska: All right.
The
Chair: The floor is yours.
Mr
Paliska: My name is Mario Paliska. I'm representing
myself and ordinary citizens. I just would like to read this
letter.
Dear Chair and members of
the committee:
Protecting best interests
of Ontario citizens who you are supposed to represent must be the
main objective and not supporting bad-apple professionals who
engage in wrongdoing or criminal activities.
Producing false,
slanderous, unreal malicious information and locking it in
official files or documents out of personal gain, malice,
incompetence or other "up to no good" reasons is serious
misconduct or a criminal act.
If a police officer would
engage in false reporting activities he would be in serious
trouble.
That the Ministry of
Health intends to push Bill 159 is an obvious indication that
this Ministry is up to no good and is acting contrary to the
public's best interest. They are taking the side of wrongdoers or
criminals and not the public.
The bill, if passed, will
produce a significant level of mistrust for doctors in the eyes
of the public. This might seriously effect and jeopardize public
health in a way simply put: many members of the public will not
see the doctor until it is too late. I personally did not see my
doctor for years due to my justified mistrust and doubt of his
competence when dealing with conditions for which holistic
alternative therapies are more suitable. Unfortunately, holistic
therapies are not covered by OHIP while conventional medicine
is.
Since then I have become interested
in natural holistic therapy and natural healing. I am also a
holder of numerous holistic natural healing certificates, which
would also qualify me to be licensed as a holistic practitioner
under present Toronto municipal bylaws if I decide to practise,
in some modalities, at least.
Holistic therapy or
healing is absolutely no replacement for conventional medicine in
many cases except in some conditions, but the issue here is trust
for doctors, which Bill 159 would seriously undermine and which
would not be fair to good doctors and patients who would need
them but would stay away because of this bill. I don't say
everybody would stay away, but many would, or some at least.
Bill 159 will do nothing
but jeopardize public health by generating a significant level of
mistrust the public will have for doctors, which might result in
fatalities in some or many cases if because of this bill people
stay away from doctors until it is too late.
Bill 159 would also
produce serious problems in the justice system when patient files
might play an important role in criminal justice for either
defensive or offensive purposes if the patient is falsely accused
or is a victim of a crime.
Most doctors are honest,
hardworking professionals, and such a bill would not serve any
purpose for them. Bill 159 would only serve the criminals and
incompetent doctors who might benefit from this bill.
Bill 159 must not be
passed and should instead be replaced by another bill which would
not only protect the public from damage to their reputation but
would also punish the criminals and incompetent doctors this bill
is supposed to protect.
My personal "living hell"
experience with some diabolical neo-Nazi fascist criminals, whose
leader for North America was Toronto doctor Marin Sopta, clearly
identifies the potential destructive damages that false files,
slander and lies can have on ordinary citizens who for some
coincidental reason becomes a threat to conspirators. In my case,
the conspirators were also members of the Canadian government,
because they cover them up and provide them with training
facilities. I didn't put this, but I just want to explain
that.
Mary Sopta, a Canadian
scientist who is Dr Sopta's wife, who was a member of the Liberal
Party of Canada who ran in the Etobicoke-Lakeshore riding in the
federal election, prompted an angry demonstration of Canadian
Serbs which caused her downfall.
Dr Sopta's associates
were also involved in numerous unlawful activities, including the
mid-1980s bombings in New York and Toronto. They were also
involved in paramilitary terrorist training in Ontario, which was
actually preparation for the upcoming war in Yugoslavia,
involving them in crimes against peace, war crimes and crimes
against humanity as clearly identified in some media information.
Such criminal activities are contrary to international laws
founded at the Nuremberg trials, Article VI, A, B, C (I) and
(II), which also implicate the Canadian government in breaking
such a law in covering up such criminals and providing the
training facilities for their programmed war crimes activities
which took place later.
The United Nations law
founded in the Nuremberg trials, Article I, II, III, IV, V and VI
A, B, C and (I), (II) clearly identifies that no one is above the
law regardless of position in society or any country. Canada
signed that law, which is also part of the Criminal Code of
Canada, but the Canadian government in this case broke this law
by being an active participant. The Canadian government was a
willing participant in the breaking up of my country, the former
Yugoslavia, but never acted to ensure the rights of my nation,
which is Istria, in the new country which is called Croatia,
which also has no respect for Istrian rights for autonomy and
self-government.
I was considered at that
time a serious threat to criminals associated with Dr Sopta and
his strong connection with the Yugoslav-Croatian section-secret
service-UDBA. According to findings, they also were one of them
connected to the CIA-well, everybody knows that; I'm not the only
one-and the government of Canada. As soon as I became a threat to
their identity they immediately resorted to well-proven tactics
short of murder: assassination of character and reputation.
In 1988, in Yugoslavia
the secret service-UDBA-orchestrated the death of my brother when
he became a threat to their identity by him knowing of their
slander and conspiracy against me and how they used the police to
generate lies and false information. They also used in Canada too
as they did in the former Yugoslavia. Such lies were similar to
those used in 1977 when I was continually verbally harassed at my
workplace in Toronto, which forced me to abandon a secure and
well-paying job.
It is your duty and
responsibility to protect the public and not the criminals, so I
ask you to please reconsider pushing Bill 159 for the sake of
everyone concerned.
Thank you for your
attention.
I also attach this
letter. This is for your information, so the connection between
those criminals-my case is how the doctors can be a very
influential source for the good or for the bad of the citizens.
In this case they would have to be neutralized for some reason,
which is for instance because somebody knows something about
that. Especially in this case, it clearly said that he was
actually, the Serbian community organized a demonstration at
Queen's Park here against him. I don't know if you knew about
that. He was a doctor. He was the head of the neo-Nazi
organization called Ustashas. This is his friend. You can see him
saluting-the neo-Nazi salute. This guy, named Kapular, he is now
a general. He used to work in that working place where I was
forced to leave because I had asthma. At that working place also
used to work one Toronto police sergeant who was involved in the
shooting of the black gentleman with the sword on Bathurst
Street, above you, a few years ago. That sergeant used to also
work with me as a part-timer. He used to go in the police
academy. His brother was there. I was myself a vice-president of the Jane
Finch Concerned Citizens Organization for some time. Linda
Morowei, you know her; her brother was actually shot by this
police officer.
That police officer used
to work with that general and me. That general became involved
here with paramilitary training. This top guy next to President
Tudjman, Mr Gojko _u_ak, a Canadian businessman, he's the one
that actually promoted him to general. It's his sister that
started with this slander conspiracy against me in the place
called Weston Bakeries in Toronto. The lies that they make here
and back in Yugoslavia caused my brother's death. So just
generally the lies and false information can destroy people's
lives.
Acting on behalf of those
kinds of cases, how can doctors have such power to do something
evil? As they have for good, they also can do something bad and
get away with that. The information about them being in war
crimes I got from the newspapers, so they can blame the
newspapers or sue them if they want. I don't care about that.
The
Chair: Thank you very much, Mr Paliska, for your
presentation. We appreciate your taking the time to come before
us here this afternoon.
1700
ONTARIO NURSES' ASSOCIATION
The
Chair: Our next presentation will be from the Ontario
Nurses' Association. Good afternoon and welcome to the
committee.
Ms Barb
Wahl: I'm Barb Wahl, president of the Ontario Nurses'
Association. The Ontario Nurses' Association is very pleased to
have this chance to comment on the Personal Health Information
Privacy Act.
We represent 45,000
registered nurses and allied health professionals working in
hospitals, long-term care, community centres, community nursing
and so on. It's our obligation and our duty to act on behalf of
the professional interests of our members and also to speak for
the public good.
We understand that the
privacy commissioner believes this legislation should be
redrafted completely because it's not compatible with federal
legislation. We agree with this and we hope that the provincial
government will in fact completely reconsider the direction it
has taken.
We're here to provide
feedback on the legislation as it currently stands. Many other
groups have already appeared before you, so I'll try to be fairly
brief. We submitted a document detailing our concerns to the
Ministry of Health and Long-Term Care last September and were
disappointed that the act does not reflect what we sent in that
submission.
I would like to focus on
three areas. First of all, disclosure and access: it pertains to
the legal and ethical obligations of registered nurses and allied
health professionals to maintain patient confidentiality and to
protect the rights of individuals. This will also deal with our
concerns related to who has access to information.
Our second point is the
double penalty for legislative violations. ONA is deeply
concerned that health professionals can be penalized twice, once
for violating this act and once for failing to meet their
obligations under the Regulated Health Professions Act, which
already exists.
On the third point,
unrestricted government access to private health information, ONA
believes the government should be subject to the same
restrictions and limitations as all other parties.
Health professionals have
a moral and a legal obligation to ensure that a patient's
personal health information is kept private and that an
individual's rights are protected, and that a patient's consent
to disclose health information is current and genuine. This
legislation allows too many exceptions on what information can be
disclosed and to whom.
First of all, more on
disclosure and access issues: we agree that consent should be the
standard in the act. Disclosure must be based on the right of
consent. Disclosure without personal consent must only take place
in extreme and exceptional circumstances that need to be clearly
defined in legislation.
ONA is deeply concerned
that the legislation allows the Minister of Health and other
parties the authority to disclose health information without
consent, based on vague and undefined provisions. For example,
disclosure to a researcher is subject only to the approval of the
research ethics committee. This research ethics committee may
determine that the researcher needs to obtain consent, but it
isn't obligated to do so under the legislation.
The ethics review body
has been granted the legislative power to assess whether adequate
safeguards are in place to protect the privacy and
confidentiality of individual personal health information. We're
greatly concerned about that.
The non-specific language
in the legislation is of great concern. For instance, in sections
24 and 27, there are extremely open-ended terms with restrictions
on the use and disclosure of health information to third parties.
We believe this creates a loophole that leaves the legislation
open to abuse.
The legislation also
states in section 36 that it is permissible to release a
patient's personal health information without consent to such
groups as the regulatory bodies of health professionals for
administering and enforcing their respective acts. How will the
government ensure that health professionals will be informed of
the rules that govern a health discipline aside from than their
own, keeping in mind there are over 20 different health
disciplines?
ONA also strongly
believes that the need for safeguards will be even more essential
as the health care system becomes increasingly dependent on
information technology. ONA supports the need for a single
integrated health care system linked by information technology.
However, this seamless system for the delivery of services must
ensure that the appropriate care provider is able to access health information and
still ensure a patient's privacy and confidentiality.
We're also very concerned
about the restrictions in the act relating to individual access
to personal health information. For example, section 44 contains
a loophole that has the potential for preventing individuals from
accessing certain types of information about themselves, which
will be determined by regulation.
Regulations may also
attach fees for access or copies of personal health information.
We believe that could pose a barrier.
Our second concern is
about the double penalty for legislative violations. The
legislation sets out a penalty for wrongfully disclosing personal
health information, including a fine of up to $50,000 against an
individual. In addition, a professional provider could also be
subject to professional misconduct penalties for violating the
Regulated Health Professions Act, which already exists. There are
provisions there on confidentiality. This could bring the severe
penalty of the loss of licensure and a fine of up to $35,000. ONA
believes this would unfairly penalize health professionals twice
for the same violation.
Regulatory colleges
mandated under the Regulated Health Professions Act set out the
parameters for professional practice and should be the final
arbitrators on professional practice. These regulatory bodies are
created to safeguard patient care. They're the arbitrators of the
standards of practice and professional conduct. They're empowered
with the legislative accountability to determine what is a
reasonable action for health professionals in certain
circumstances, and they have already established safeguards for
the protection of the public and procedures for imposing
enforceable and appropriate penalties.
There are many situations
where a health professional may have to disclose private
information without the consent of the patient or a substitute
decision-maker. This can occur, for example, when a health
provider must deal with police, coroners, public guardians,
children's aid societies and public health boards. Some but not
all of these examples are set out in the legislation as personal
health information that may be disclosed for a specific
purpose.
1710
The legislation has left
it up to health information custodians to develop safeguards and
practices on disclosure of health information without consent.
ONA believes it's the role of government to set the provincial
standards. There must also be recognition for the possible
conflict a health care provider may be in between the competing
principles of public interest and the protection of individual
privacy.
We're concerned, thirdly,
about the unrestricted government access to private information.
The Minister of Health, or designate, is granted unlimited access
to private health information and is not subject to the
restrictions that apply to other parties on what information can
be accessed and released. We believe government has the same
moral obligation and accountability to protect the rights of
private citizens.
Currently there is no
limitation on the type of information that can be disclosed to
the Minister of Health. Does the government really need all of a
person's health information, including health status, to meet the
purposes set out in the legislation, that is, the management of
the health care system? We believe the government really should
only need information relating to a person's registration, such
as name, address, phone number, gender, date of birth, marital
and employment status, identification number and so on, in order
to verify it has accurate information for the management of the
health care system. My experience with patients is that they
wouldn't want the government to know all of their personal health
information.
There should be
limitations on what personal health information should be
disclosed. The limitation described in section 31 is weak, and in
practical terms the government will seldom have to justify to
Ontario's privacy commissioner why it is requiring personal
health information. We believe the government must be held
accountable for how the information will serve the public's
interests.
ONA agrees with the
opinion of George Radwanski, the Privacy Commissioner of Canada,
who says that this legislation seems designed to ensure that the
Ontario government and a "virtually unlimited range of other
organizations and individuals" have unrestricted access to the
most private health information of every citizen in Ontario.
Here is what we
recommend.
Eliminate the fines and
penalties directed at individual health providers for the
violation of Ontario patient privacy laws and leave the
regulation of health professionals to their mandated regulatory
bodies.
The legislation must
direct health information custodians to provide comprehensive
education to health professionals so they can meet their
obligations and accountabilities and can clearly understand what
information may be disclosed and what must be protected. It is
unreasonable to expect health professionals to be aware of all
the statutory duties required under this legislation in addition
to the laws regulating their own practice.
Health information
custodians must develop policies that clearly spell out a process
for health professionals who need guidance on decisions relating
to requests for disclosure.
The government must be as
accountable as all other parties for the protection and
non-disclosure of confidential patient information and the
government should have the same limitations to access and
disclosure as other parties.
Health professionals need
access to information to ensure they are referring patients to
the appropriate care provider and services. The legislation
should facilitate information-sharing for health professionals
while protecting the rights of the individual. We believe the
legislation as it is
set out is too broad and puts the privacy of individuals at risk
rather than protecting it.
In conclusion, the
judgment calls that nurses and other health professionals have to
make on a day-to-day basis are difficult at the best of times.
They are under constant pressure in understaffed and highly
demanding workplaces to provide safe, quality patient care and
also to make sound decisions about information disclosure. This
is viewed as a very serious issue. The combined threat of a
$50,000 penalty and the possible loss of their licence to
practise as a result of professional misconduct may have a
significant chilling effect on nurses and other health
professionals for whom the sharing of information is part of the
integrated delivery of quality health services. One more time we
see a threat delivered to professionals when in fact we need to
retain our health care professionals and give them support so
they can do their professional jobs.
This legislation is
deemed to protect from liability health care providers who act
reasonably and in good faith. However, it doesn't provide enough
guidance, nor does it give comfort to health professionals who
face situations every day where they are required to disclose
information to public health boards, social agencies, group home
workers, children's aid societies, or during police or coroners'
investigations.
Nurses are already
working under extremely difficult conditions as the result of
health funding cutbacks and staffing shortages. Many are
concerned that their professional standing may be at risk because
they are unable to provide safe, quality patient care at this
time. Because of this, thousands have left their practice to go
to other jurisdictions or have left nursing altogether.
It is essential that this
legislation be designed to enable nurses and other health
professionals to protect their patients' rights and privacy and
to fulfill their professional obligations. It must arm them with
knowledge and effective tools for making fair and reasonable
decisions on the disclosure of health information.
Thank you.
The
Chair: Thank you very much. That leaves us about two
minutes per caucus for questioning. This time we'll start with Mr
Wood.
Mr Wood:
Would you support a provincial bill based on the federal privacy
act?
Ms Wahl:
We would have to look at what the provincial bill looked like
specifically.
Mr Wood:
Do you think the federal act is a good act or do you have
reservations about it?
Ms Wahl:
We believe that's more appropriate.
Mr Carl DeFaria
(Mississauga East): How would you deal with the right to
access by someone suing a health care provider? You are
advocating basically for the health care providers providing the
rules of access to information.
Ms Wahl:
This already exists in that we have the Regulated Health
Professions Act. The Regulated Health Professions Act was created
in order to protect the public from the health professionals.
That act has within it a number of-I don't know what you would
want to call them-legislative bullets which ensure that if you,
as the recipient of care, have complaints and concerns, you will
receive all the information you want and-I'm quite aware of the
process-all the information about the patient's chart, everything
the individual practitioner has ever done and said. You are able
to access this at this point in time. So this legislation isn't
required for the person who wishes to sue to get that
information; it already exists.
Mr
DeFaria: That's not my experience. I've had constituents
who tried to get records and they couldn't get them.
Ms Wahl:
If you deal with the various colleges under the Regulated Health
Professions Act, you have the right to get that information.
Mrs
McLeod: We've heard a lot from the regulated colleges
over the last couple of days and they certainly make a case that
the colleges should be exempt as health information custodians
and their regulatory framework should have primacy over what is
in the health privacy legislation. I appreciate all the comments
you've made about the amendments that need to be made to that
health privacy legislation generally, but let's assume we have
amended health privacy legislation and colleges are excluded but
their regulatory provisions are protected. Does that still leave
the front-line providers working under two very different sets of
rules? I hear you saying it does in terms of the double fine.
Ms Wahl:
Yes, it does.
Mrs
McLeod: There would have to be clarity around that, but
are there other areas where there are two sets of rules now?
Ms Wahl:
I believe there would still be two sets of rules because over
here, as a practitioner, I'm obligated under the College of
Nurses to disclose information to a certain body. Under my
professional practices and standards, I need to tell this body
about what I've seen, what I've experienced etc, and over here it
says that I can't do so.
In dealing with an
elderly individual who may or may not be of sound mind at all
times, I may not be able to find any family members. I may have
concerns, I have to disclose information to someone, yet over
here I'm not able to protect that individual's privacy. So we
believe there should be one set of regulations.
Mrs
McLeod: Or at least absolute consistency between the
two?
Ms Wahl:
Absolutely. My sense when I'm reading this is that my
professional practice could in one situation be pulled in two
different directions.
1720
Ms
Lankin: Barbara, I appreciate very much the
recommendations you've set forth. On the last situation you just
commented on, I'm wondering whether someone could perhaps prepare
a case study for us and give us a clear example.
One of the things the
colleges have said is that there are areas in the new proposed
legislation that are stronger in terms of privacy protection which they
think should be imported into the RHPA scheme. That might address
the concern you're raising. I'd like a practical example, though,
of where the professional code of conduct and the requirements
under the RHPA are different with respect to the protection of
privacy than what this bill proposes. If that's possible, that
would be very helpful to us.
Ms Wahl:
You think it would be useful to have that drawn up? Because
there's actually other legislation that could impact on it as
well. That's why I think the point about the amount of
legislation that governs a professional in trying to make a
decision with regard to a particular patient is actually
mind-boggling. The standards of practice-you've got this much.
You've got a lot of legislation here. You have other pieces of
legislation that impact a decision that in fact must be made
sometimes within a few minutes.
Ms
Lankin: I appreciate that. I think your comments about
the policies and education that have to be developed and provided
to help professionals are really well taken as well. Also, this
is, I think, the first time anyone has mentioned the double
jeopardy with respect to the fines. That's a really good point.
The committee will need to take a look at that. But if it's
possible for ONA to provide us with a couple of case studies of
the contradictions, I think we would find that helpful.
Ms Wahl:
I think it's critical that legislation be supportive of patient
care as opposed to throwing up another barrier.
The
Chair: Thank you very much, Ms Wahl. We appreciate your
coming before us this afternoon.
ONTARIO HOSPITAL ASSOCIATION
The
Chair: Our final presentation this afternoon will be the
Ontario Hospital Association. Good afternoon and welcome to the
committee.
Mr Frank
Norman: Good afternoon. My name is Frank Norman and I'm
the chair of the Ontario Hospital Association board of directors.
With me this evening are David MacKinnon, the president and chief
executive officer of the Ontario Hospital Association; Murray
MacKenzie, who is the president and chief executive officer of
North York General Hospital and my immediate predecessor; and
Deborah Tarshis of Weir and Foulds, our legal counsel.
In the knowledge that
this is the end of a long day, I'd like to make some very quick
introductory remarks and then pass on to others who are much more
knowledgeable in this world than I am, as I am neither a health
care professional nor am I employed in the world of health care;
I'm a volunteer.
I'd like to start by
acknowledging the sensitivity and complexity of this issue. The
OHA applauds the government's initiative and commitment to
addressing the issue of privacy and personal health information
and supports the introduction of legislation.
The privacy of our
personal health information is of paramount importance and it
merits special protection under the law. We believe that laws
designed with the commercial sector in mind cannot respond
appropriately to such sensitivities and, as such, we support the
need for comprehensive health privacy legislation. It is vitally
important that appropriate safeguards are in place to protect
individuals' privacy.
The enhanced use of
information technology is crucial to our continued efforts to
promote integration and accountability in the health care system.
The challenges of striking the desired balance between an
individual's right to privacy and the information needs of the
health care system are serious.
While the OHA has a
number of concerns respecting some of the provisions within Bill
159, we're committed to working collaboratively with the Ontario
government to ensure that privacy legislation for personal health
information is enacted. I think our track record with the consent
legislation bears out our commitment to working in these
areas.
Mr MacKenzie will discuss
what can be done to achieve the balance between protecting
personal information and our ability to provide care and plan for
the future in greater detail. Mr MacKinnon will also comment on
the relationship between the need for privacy and technological
change.
Mr Murray
MacKenzie: Privacy issues, while always of fundamental
concern, are particularly important when dealing with matters
related to an individual's health. They're important and they're
unique. At the same time, health care providers are increasingly
under pressure to improve planning and to be more
cost-effective-gains which will largely be achieved through the
use of information technology.
The challenge of striking
the desired balance between an individual's right to privacy and
the information needs of the health care system is a difficult
one. Health privacy legislation has to be tough enough to protect
personal privacy but it also must be flexible enough to enable
integration, future planning and policy decisions. It must allow
for the gathering and exchange of information by many different
providers in many different locations. It must guarantee that an
individual's personal health information remains confidential,
while providing a foundation for the future-a future that will
rely more and more on technology, electronic communications and
the transfer of the very information that we must protect.
The OHA acknowledges that
achieving this balance is a formidable task but believes that
such challenges should not impede the establishment of a
comprehensive legal framework for personal health information. We
need it and we need it in Ontario now.
The OHA has long been a
proponent of using information technology to integrate care,
whether it is integration of care and transfer of information
between multiple sites of a single corporation-and health care
restructuring has left us with many of these. I include, for
example, my own hospitals at Finch and Bathurst in Toronto or at Leslie Street,
and my own long-term care facilities at Finch Villa and the
seniors' health centre. I work in a multi-site corporation which
is truly integrated. Patients move, as they're in different
stages of their care, from one site to another. This current
legislation, under some of its definitions, leaves us with major
problems.
The OHA believes that the
use of confidentiality of personal health information is an
essential part of the continued integration of health care
services. It is also an integral part of promoting accountability
within the health care system. If patients are truly going to
benefit from emerging technologies to get the right care in the
right place at the right time, their care providers need access
to health information. If we are to adopt modern technologies and
make full use of the advances in information technology, we need
to be able to share information within institutions and across
the entire health care system.
Earlier today, my own
hospital and York Central Hospital signed an agreement of
collaboration in pediatric and maternal-newborn care. Patient
records must flow sufficiently and effectively through the system
with the patient every day if this type of collaboration is to be
successful. With this need for balance in mind, the OHA does have
a number of concerns with regard to certain provisions in Bill
159.
Several very important
issues, namely, research and directed disclosures to the
minister, require further study, sometimes much further study. It
is our view that, as currently drafted, the provisions of Bill
159 need revision in order to more fully balance between patient
rights and system needs. To achieve this goal, the government
must hold meaningful consultations with the affected stakeholders
to ensure that the intent of the legislation is reflected in all
of the bill's provisions. They are not, in many.
We also have a number of
specific concerns respecting the definition of "health care
custodian," the electronic transfer of personal health
information, accuracy of information, permitting discretionary
disclosures to assist investigators, and the powers of the
privacy commissioner. The provisions respecting offences,
penalties and immunity may potentially deter many from assuming
the responsibility of hospital directors. These and other
specific concerns can be found in detail in our submission.
On a more positive note,
we are pleased that the quality of care information has been
treated as a separate category of information, and appreciate
that special consideration was given to use of information for
charitable fundraising purposes. The OHA further acknowledges the
efforts made to provide for continued system improvements in
respect to continuity of care and accountability, which are so
essential to the continued evolution of our health care
system.
1730
The OHA also supports the
creation of the position of assistant commissioner with expertise
in dealing with privacy issues in the health care sector.
In conclusion, we support
the efforts of the government to introduce privacy legislation
for personal health information. Given the complex and sensitive
nature of this issue, we acknowledge that the legislative process
may prove both difficult and protracted. It is our position,
however, that such challenges should not pose an insurmountable
obstacle to the establishment of a comprehensive legislative
framework for the privacy of personal health information. We need
to work at it, and we need to work at it intensively with many
stakeholders. The OHA certainly is willing to commit to that
effort.
Mr MacKinnon will now
comment on the relationships between privacy issues and
technological change.
Mr David
MacKinnon: Thank you very much, Murray. I'd like to
really deal with two aspects of that question: first of all, why
the sharing of information routinely is so important to us, of
course always assuming appropriate protection for privacy; and
second, what are recent changes with respect to the risks
attached to those kinds of information exchanges.
I guess the first reason
it is so important to us, building on some of Murray's comments,
is that if we, for example, can have processes and procedures in
place whereby we transfer information about people instead of the
physical transfer of those people, think what we can achieve. If
someone's got a real problem and is lying in a small hospital,
perhaps if we can exchange electronically advanced MRI or X-ray
images and have that person treated by a physician in a hospital
300 miles away, we have a more comfortable patient because he or
she is not being moved. We probably have less risk in transit, in
terms of, in some cases, ambulances, and we probably have more
timely treatment. So in some ways, improved sharing of
information is very much in the interests of patient care. That
of course is always central to the questions we ask.
The second reason
transfer is so important to us is because if you think of most of
the people in this room as taxpayers, what they're really buying
as taxpayers, in a sense, is a hospital system, because they
travel, because they are members of families who have people
located in different communities. Most of us in the room are in
that position. So if people are to get the full value of the
system which is there for them, they need to be able to deal with
that system and other parts of the health care system on the
understanding that data can be shared in the best possible way to
support their treatment-always taking, of course, precautions on
disclosure.
The third reason sharing
is particularly important to us, second only to the patient care,
is because it can bring serious efficiencies and cost savings to
the system and to the taxpayers. The avoidance of repetitive
testing and, again, the real costs of transfers of people are
both areas where if we can get a better system of sharing data,
with all the obvious safeguards that are necessary, we can
achieve better patient care, we can provide better system service
to the people of Ontario, and we can probably achieve some cost
savings which would otherwise not be possible. So sharing of information has a very
positive side to it that I'd like to draw to your attention.
The second issue I'd like
to comment briefly on relates to the issue of risk. In recent
years there have been a great many developments that affect the
actual risks attached to the transfer of information with
appropriate safeguards. The first is that with computer systems
and new encryption technology we can achieve, we think, the
transfer of patients' data back and forth between hospitals and
other health care providers with degrees of safety and access
that probably would have been unknown several years ago. That is
a very important, very recent technological development that has
profound significance for this debate.
The second thing I'd like
to draw to your attention is that the present systems of storing
and transferring data have risks of their own attached to them
and we need to understand them. If you think to your own personal
experience of the number of times you walk into offices of any
kind, wherever you see paper filing systems and complex
procedures surrounding them, you see a risk of inadvertent
access. If we can modernize the system, move to more advanced
technology and share it more safely, in many cases that will
actually provide a higher level of protection to patient data,
not less.
The final area in which
we think the risks attached to this have been to some extent
illuminated relates to what other organizations in society have
been able to achieve. If you think, for example, of financial
institutions, very large volumes of vitally important, highly
personal data are shifted around the systems under very explicit
protocols with relatively few-and in thinking of the media in
Toronto in recent years, almost none-real problems that have
arisen of a profound nature that have merited a major social
debate arising from that.
So in summary, there are
major opportunities here to actually improve patient care, get
costs under control, and improve and reduce patient discomfort,
and we think the risks are different from what they were a few
years ago.
I'd like to just enlarge
on a comment that Frank made in relation to the consent act. On
the way out the door as we came here, our internal counsel
mentioned to me that she had been present and very much involved
in the consent act the last time the government either reviewed
it or passed it; I'm not sure exactly what the detail of that
was. But she did indicate that the OHA had worked with the
government on 200 amendments. If it is necessary to expend that
kind of effort to get a good act which you as legislators feel
balances the risks and which everyone involved feels really moves
us forward in terms of both patient care and privacy, that's the
effort we'll put in. The devil in this kind of thing is often in
the details. If for this legislation we have the opportunity over
the next few weeks and months-which we certainly hope we
will-we'll put in enough effort to deal with the 200 or 500
amendments or issues in order to move forward as a society on
this vital issue.
Thank you.
The
Chair: Thank you very much. That leaves us about three
and a half minutes per caucus, and this time we'll begin with Mrs
Pupatello.
Mrs
Pupatello: Thanks so much for coming today to speak with
us.
Of the 200 amendments
that the OHA presented to the Minister of Health, how many of
those are included in this bill?
Mr
MacKinnon: I'm sorry. I was referring to another piece
of legislation on an earlier occasion. I was not referring
specifically, in using that number of 200, to this particular
bill. There are, though, many issues, as both Mr Norman and Mr
MacKenzie have commented, where we would really want to work
through the detail on it. All I was really indicating was that if
that's what it takes, to work with 200 or 500 possible changes or
separate discussions, that's what we would do.
Mrs
Pupatello: There were some key areas that you had
expressed interest in that did not appear in this bill?
Mr
MacKinnon: It's a very complicated bill, and many of the
areas that we are concerned about and would like to discuss
further are included in the bill. There almost certainly would be
several things that we would want to talk to the committee about
at a later point, but we believe the bill, on balance, addresses
or puts an overall infrastructure or structure along health
information that is a significant step forward. I think there are
literally hundreds of issues of omission, of perhaps commission,
of things that maybe we haven't even thought of at this point and
that would probably be necessary in the later stages, but we hope
we will have the opportunity to have that discussion.
Mr
Norman: Perhaps I could add to that from a different
point of view. In the situation which has been occurring with the
individual in the Hamilton hospital who has a medical condition
that we're still having difficulty diagnosing-although she is
improving, thank God-this particular piece of legislation at the
moment has within it as an unintended consequence the fact that
the Hamilton hospital concerned would be unable to consult either
to Winnipeg or to Atlanta, Georgia, to the centres for disease
control, unless they in fact had similar legislation in place
which would guarantee the same privacy of information. This does
place us in an interesting position when one starts to attempt to
work on that.
1740
Another aspect deals with
technology. The technology exists at the moment whereby we can do
scans of various natures, be they MRIs or CAT scans or others, in
one place and have somebody interpret them in another place,
which can be some miles apart, and some considerable amount of
miles apart. As long as they're part of the regulated health
professionals, obviously certain things happen, but they won't
all be. We will within the next three to four years be seeing a
great deal more of the consultative work being done at long
distance, and in order to do that we need to transfer
information.
Mrs McLeod: Can I
raise an issue directly related to that, then? There are a lot of
issues we'd love to discuss with you, including the concerns
around directed disclosures, but specifically on the ability to
transfer information, I think the first instance you mentioned
might be addressable in terms of not using personally
identifiable information. But setting that aside for a minute,
the second instance where you want to be able to share
information with other health providers, as Mr MacKenzie
mentioned, or to provide for some treatment options at a distance
through technology raises a concern about the lockbox. As we get
into this process of looking at amendments, one of the dangers is
that things were put into this legislation because people had a
concern about it; now there are amendment proposals to put things
back in, like the lockbox that's a recommendation of the privacy
commissioner. If you were saying to people, "We need your consent
to share information with other health providers," do you think
they would not grant that consent except in really unusual
circumstances, and why would they not be given that choice, in
any event, when it's their own risk that they're taking?
Mr
MacKenzie: Let me just make a quick comment about the
lockbox, which I think is a dangerous provision. I think it does
put patient care at risk and it puts health care professionals at
risk. I'll be glad to elaborate more about that, but I want to
get back to your prime issue with regard to consent.
I think the vast majority
of people would be pleased to consent. The problem is that I have
approximately 600,000 patients in one form or another whom I see
every year in my organization, and to collect another 600,000
consents, and maybe more, is logistically a bit of a challenge at
the moment. Not that we shouldn't be thinking it through, but
it's not immediately obvious how to do it.
Mrs
McLeod: They can't sign a consent as they come in as
part of the admission? That's not reasonable?
Mr
MacKenzie: There can be an argument made whether that is
in fact the appropriate time because is it free and informed
consent when you're on your way in? Maybe yes, but maybe not
quite yes. Those are the types of issues that I think we need to
think about a little more carefully.
Mr
Norman: This is, I suggest, the sort of detail that
David was talking about at the end, of the need to be able to
come together and literally work through each of these items to
make sure that the unintended consequences, which were not in the
minds of those who drafted the bill, can in fact be examined in
order to put the privacy of the individual-and I have no doubt
about this, we would not be here if it were any other way-ahead
of all the other needs. But we do need to have those other needs
very clearly debated, and on occasion we may well need to change
that balance slightly.
Ms
Lankin: I wish we had considerably more time; there are
a lot of specific questions I would like to ask. But let me then
go to the process of where we go from here, because we're drawing
to the end of these committee hearings and I'm concerned about
how this bill makes it to law at some point in time, how we have
a health information privacy legal framework in the province of
Ontario.
We have as a committee
given some thought to looking at the proceedings from the last
three days, and what we will hear tomorrow, and prioritizing some
of the areas that we think we would like to give advice to the
ministry on that they address and look at in making some changes,
seeing where there's some consensus among us as legislators from
what we have heard, and hoping that we can have a discussion with
the ministry that would facilitate some redrafting of the
legislation. Where it goes from there is a question. I put to you
one possible scenario: that the ministry goes away and, based on
all of the very valuable input, the technical advice that's been
given here, they do a redraft and a new draft bill comes out.
Then we can sit down and have the detailed consultation with
people that you're proposing.
I remember the 200
suggestions from the OHA on the consent legislation, and it's a
better law because of it, David, absolutely. Have you given any
thought to the consultation process and/or, if not today,
offering what you can? Would you make some recommendations to the
committee and then in the near future with what you think should
happen to the bill?
Mr
MacKinnon: I would think that if the committee could
produce a report outlining areas of consensus, or otherwise, that
would really help clarify the issues for the later process, which
I think should be very much as you outline. It would be really
useful to us in terms of making the suggestions that we would
want to make to the Ministry of Health to have a useful report
from this committee that reflects all the testimony you've heard.
I think I can safely say we would greatly welcome that.
Mr Wood:
Number one, I'd like to thank you very much for the very generous
offer of help, which will be taken up by the ministry. I thank
you for that. I gather from what you said that you favour one
regime for health privacy information protection in Ontario. Is
that a yes?
Mr
MacKenzie: Yes.
Mr Wood:
As you probably don't know, I'm a lawyer by trade, and over the
last 11 years electronic information processing has quite
literally revolutionized my profession. Do you see the same kind
of impact on hospitals?
Mr
MacKenzie: Yes, a million times over, which is one of
David's favourite topics.
Ms
Lankin: Careful. He has a 45-minute speech on this.
Mr Wood:
You've got 10 seconds.
Mr
MacKinnon: We think the path to the future for better
patient care, better patient privacy and a more sustainable
system relates to technology, its early adaption, its creative
use and its respectful application to health care. There are just
huge possibilities before us. That's one of the reasons why we
attach so much importance to this. If we do not modernize our
capacity to use new technologies by making whatever appropriate
adjustments to the legislative provisions respecting privacy, I
think we'll have
real difficulty in moving to the system of the future, and the
future of the system is very much more technological than the
past.
Mr Wood:
Could I ask you a bit about the lockbox? I gather you do not like
the lockbox as a concept, and I wonder if you can explain to us
why that's the case.
Mr
MacKinnon: I'll just turn that back to Murray.
Mr
MacKenzie: I'll make a comment or two. To have
information that is not available to health care professionals
who are charged with the responsibility of providing care creates
almost an impossible situation. There are huge residual issues
related to liability for the care provided when the information
is being withheld. I think it's simply inappropriate and
unrealistic to expect that-although consumers are certainly much
more informed than they've ever been, they in many cases will not
understand the full significance of withholding that information.
They are not health care professionals.
Mr Wood:
I'd like to turn briefly to the question of consent. Where the
current draft requires informed consent as opposed to plain
consent, have you addressed your minds to the issue of whether or
not that would create any problems and what the implications are
of asking for informed consent as opposed to simply plain
consent?
Mr
Norman: I wonder if I could put that question to
Deborah, who's been looking at a number of these things in the
detail that you would like as a lawyer to have back as an answer,
but she doesn't get too long to say it.
Ms Deborah
Tarshis: I think, in fairness, that is not an issue we
have focused on in detail. There are other of the broader issues
that are addressed in the submission that have been focused on.
That certainly is an issue that we would like to focus on more
specifically.
Mr Wood:
Can we invite you to do that and perhaps give us the benefit of
your observations once you've done that?
Ms
Tarshis: We would be pleased to do it.
The
Chair: Thank you all for coming before us here today and
ending today's session. We appreciate your submission.
Mr
Norman: Thank you for the opportunity to be here. Good
luck as you do tomorrow. We look to the recommendations that
will, I think, very much aid in clarifying some of the issues
which need to be addressed.
The
Chair: Just a reminder to committee members, we are
starting tomorrow morning with video conferencing to accommodate
submissions from people who were not in the GTA. We will be
starting sharp at 9 o'clock and we will be in room 151.
If there's nothing else
for the committee, we stand recessed until 9 o'clock.
