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
Office of the
Provincial Auditor
Mr Erik Peters
Ontario Medical
Association
Dr Albert Schumacher
Ms Barbara LeBlanc
Ontario Pharmacists'
Association
Ms Barbara Stuart
Ms Holly Rasky
Mr Gerry Cook
Psychiatric Patient
Advocate Office
Mr Vahe Kehyayan
Ms Lora Patton
CARP
Mr Bill Gleberzon
College of
Physiotherapists of Ontario
Ms Jackie Schleifer Taylor
Mr Richard Steinecke
Mr Rod Hamilton
Canadian Institute
for Health Information
Mr Richard Alvarez
College of Dental
Hygienists of Ontario
Ms Fran Richardson
Mr Richard Steinecke
Mr Marvin
Siegel
Canadian Institutes
of Health Research
Ms Patricia Kosseim
Dr Don Willison
Mr Matthew Furgiuele
AIDS Committee of
Toronto
Mr Lee Zaslofsky
Privacy Management
Group
Mr Christopher Comeau
Ms Jeanne Bickle
Borden Ladner
Gervais
Ms Daphne Jarvis
Ms Jacinthe Boudreau
Ontario Physiotherapy
Association
Ms Caroline Gill
Ms Signe Holstein
Canadian Mental
Health Association, Ontario division
Ms Patricia Bregman
Dr Barbara Everett
Electronic Child
Health Network
Mr Andrew Szende
Ontario AIDS
Network1014
Mr Stephen Squibb
Schizophrenia Society
of Ontario
Ms Janice Wiggins
Mr Clement
Babb
Ontario Occupational
Health Nurses Association
Mr Brian Verrall
Royal College of
Dental Surgeons of Ontario
Mr Irwin Fefergrad
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 Doug Galt (Northumberland PC)
Mr John Gerretsen (Kingston and the Islands / Kingston et les
îles L)
Ms Frances Lankin (Beaches-East York ND)
Mrs Lyn McLeod (Thunder Bay-Atikokan L)
Mr John O'Toole (Durham PC)
Mrs Sandra Pupatello (Windsor West / -Ouest L)
Mr R. Gary Stewart (Peterborough PC)
Mr Bob Wood (London West / -Ouest PC)
Also taking part / Autres participants et
participantes
Mr Phil Jackson, manager, population health strategies
unit,
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
0907 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.
The Chair (Mr Steve
Gilchrist): I call the committee to order as we proceed
with our issues on Bill 159, An Act respecting personal health
information and related matters.
OFFICE OF THE PROVINCIAL AUDITOR
The Chair:
First up this morning is the Office of the Provincial Auditor. Mr
Peters, come forward, please. Good morning and welcome to the
committee. You barely escaped public accounts and back again
today.
Mrs Lyn McLeod
(Thunder Bay-Atikokan): He hasn't escaped public
accounts.
Mr Erik
Peters: Back in at 10 o'clock.
I appreciate the opportunity
to comment on Bill 159, An Act respecting personal health
information and related matters, which is also commonly referred
to, in short, as PHIPA, even though I find that is just as long
as the title of the act.
While most of the members are
familiar with the role and responsibilities of the Provincial
Auditor, I would like to provide some background and context to
our audit work and how this proposed legislation could impact on
my ability to carry out my duties and responsibilities under the
Audit Act. I've asked the clerk to distribute a copy of the Audit
Act to you so that you may refer to the pertinent provisions I
will be speaking about.
In a nutshell, the purpose of
my presentation is to ensure that our historical and legislated
access to information rights mandated under the Audit Act
continue under this new proposed legislation.
Free access to all
information needed to fulfill responsibilities is fundamental to
auditing. This principle, as it applies to the Provincial
Auditor, is given statutory definition in the Audit Act, which
incidentally I consider a wonderfully balanced piece of
legislation. On one hand, it gives us access to all information
that we need to do our job; on the other hand, it limits the use
of that through oaths of secrecy to strictly using that
information for purposes of the Audit Act. The only exception is
if we detect any wrongdoings that should be reported under the
Criminal Code.
The opportunity to consider
all relevant facts before forming and reporting my opinions is
fundamental to the fulfillment of my statutory duties. In
conducting their examinations, my staff must have access to all
pertinent information and explanations.
Under section 10 of the Audit
Act, every ministry of the public service, every agency of the
crown and every crown-controlled corporation is required to
provide the Provincial Auditor with such information regarding
its powers, duties, activities, organization, financial
transactions and methods of business as the Provincial Auditor
requires, and the Provincial Auditor shall be given access to all
books, accounts, financial records, reports, files and all other
papers, things or property belonging to the ministry, agency of
the crown or crown-controlled corporation and necessary to the
performance of the duties of the Provincial Auditor. So very
far-reaching access rights.
To fulfill our
responsibilities under the Audit Act, we require access to a wide
variety of information and records. For this reason, the
access-to-information section in the Audit Act is necessarily
worded in generic terms. However, specifically in audits of the
Ministry of Health and Long-Term Care, we have frequently found
it necessary to access ministry information and records that fall
within the definition of personal health information. The example
that comes to mind is OHIP records. In carrying out our audit
work at the ministry, my staff have always had access to all
information and records that we considered necessary to conduct
our audit work. We would like to see this practice continue and
be embodied explicitly in Bill 159.
I would also like to draw to
your attention clause 12(2)(a) of the Audit Act, which obliges me
to report to the assembly on whether, in carrying out the work of
the office, we received all the information and explanations we
have required.
To give you a plain
illustration on OHIP, how do we make sure that the ministry has
not paid for two hysterectomies on the same woman? This has
happened. It became public
knowledge that there were in one year at least 43 cases where
doctors had billed twice for hysterectomies. For example, how do
we ensure that things like this don't happen in our system and
don't happen to taxpayers' money?
At this point, I should
mention that my office is in the process of seeking amendments to
the Audit Act. My office has made proposals to amend the Audit
Act with the primary objective of providing the Provincial
Auditor with the discretionary authority to perform
value-for-money audits of organizations that receive grants from
the province of Ontario or an agency of the crown. In 1996, the
Legislature's standing committee on public accounts unanimously
endorsed our proposed Audit Act amendments. In fact, just last
week I updated the public accounts committee on the status of our
proposed amendments.
In formulating our proposed
amendments to the Audit Act, I should tell you that we have
sought-and that was done on my personal advice-the advice of the
Information and Privacy Commissioner regarding the issues
surrounding privacy and our access to personal health information
and records. In this regard, included in our proposed amendments
to the Audit Act is an anonymization clause-I have trouble with
that word, but the meaning is clear to me-that has been drafted
by the office of the Information and Privacy Commissioner. I can
share that with you, if you like, and we brought copies along if
you'd like to have that.
Turning specifically to the
proposals laid out in the paper entitled Ontario's Proposed
Personal Health Information Privacy Legislation for the Health
Sector, or Health Sector Privacy Rules, dated September 2000, and
Bill 159, the health sector privacy rules recognize the need for
disclosure of personal health records for audit purposes. I would
also note that this is consistent with the following
recommendation made by the Royal Commission Into the
Confidentiality of Health Information in its 1980 report, and I
quote from that report:
"That legislation governing
the confidential information maintained by hospitals and health
care facilities permit the disclosure of health information to
prescribed government recipients authorized to collect, audit"-my
emphasis but it's there-"or inspect confidential information
under provincial legislation."
So the commission already
recommended this.
It is my office's view that,
in the absence of specific exclusions in any other act, section
10 of the Audit Act provides my staff with the authority to
access for audit purposes only a wide variety of information and
records, including what Bill 159 refers to as personal health
information.
With this in mind, I would
refer the committee to subsection 36(1) of Bill 159, which
provides the discretionary authority for a health information
custodian to disclose personal health information authorized by
other acts. I emphasize the word "discretionary" because the
section uses the word "may," not the word "shall."
In discussions with the
Ministry of Health staff on this issue, we have been informed
that the ministry has always intended that access-to-information
rights of the Provincial Auditor that are currently authorized
under the Audit Act should continue under PHIPA. Specifically,
clause (i) of subsection 36(1) provides for the discretionary-I
repeat, discretionary-disclosure of personal health information
which could cover the access to information and records permitted
or required by the Audit Act. However, again I would like to
stress that this provision is discretionary.
Although the policy paper
supporting the proposed legislation recognized the need for
access to personal health information specifically for audit
purposes, the proposed legislation does not sufficiently address
the mandatory nature of my office's requirement to access this
information for audit purposes.
I want to stress that the
success of our audit process depends to a very large degree on
access to all relevant information and records that my staff
consider necessary to the performance of my office's duties under
the Audit Act, and so the wording in PHIPA should make this as
clear as possible.
We also understand the
sensitivities regarding personal health information and are
cognizant of the need to maintain adequate systems to protect the
confidentiality of this sensitive information. To this end, we
have already for many years instituted a policy of anonymization
of personal health information retained in our working papers. As
well, the Audit Act provides various measures to protect the
confidentiality of information, including a mandatory oath of
office and secrecy, and a mandatory requirement that staff of my
office are to preserve secrecy with respect to all information
that comes to their knowledge in the course of performing their
duties under the Audit Act, except-and I repeat section 27
here-"as may be required in the administration of this
act"-that's where I referred to balancing-"or any proceedings
under this act or under the Criminal Code." Also, under section
19 of the Audit Act, our audit working papers are protected from
public disclosure.
To conclude my presentation,
I want this committee to know that there will be times when my
staff will need access to personal health information in order to
fulfill my duties and responsibilities under the Audit Act. I
want to ensure that our historical and legislated
access-to-information rights under the Audit Act continue under
this new proposed legislation.
With this in mind, my
suggestion would be to include a separate section for mandatory
disclosure to the Provincial Auditor. In this regard, we believe
that the following wording would, without any doubt, achieve the
intended objective of ensuring that the Provincial Auditor's
access-to-information rights authorized under the Audit Act
continue under this legislation, Bill 159. The wording is as
follows: "A health information custodian shall disclose personal
health information to the Provincial Auditor for the purpose of
enabling him or her to carry out his or her statutory responsibilities under
the Audit Act."
This concludes my
presentation. I would be happy to answer any questions that you
may have.
The Chair:
Thank you, Mr Peters. That does give us about two minutes per
caucus. We'll start the rotation with the official
opposition.
Mrs McLeod:
Thank you very much, Mr Peters, for your presentation and also
for your recommended amendment. I would share your concern that
there be something specifically addressing the issue of access to
the auditor as required for public audits, because I think there
are a number of areas of the bill which do need amendment, and
even those areas of access that you've identified in the bill
could be affected by the amendment process we're going to go
through. There is a section 11 that allows for other acts to
specifically prevail over this act. Some of us have some concerns
with even that clause, so I think an amendment that would speak
specifically to the access for audit would be important.
Could I ask you, though, a
little bit more broadly and touch on something you raised in your
presentation, and that's that when you do access OHIP files, if
you find evidence of fraud-you didn't say fraud; you said a
violation of the Criminal Code-you would be required to report
that. If you found evidence of OHIP fraud, I assume there is a
potential criminal charge there. To whom would you report that?
What I'm getting at is, if we're able to tighten up government
access to private health information, how would you see the
follow-up to your report of OHIP fraud being carried out?
0920
Mr Peters: I
think largely because we are not medical practitioners, to
identify whether fraud has occurred-fraud actually is what a
court decides is fraud. If we have a suspicion of fraud or an
indication of something going wrong, what would normally happen
under the circumstances is that we would bring it to the
attention of the ministry first, because the ministry has a
process whereby these incidents are reported to something called
the Medical Review Committee. That is a panel of experts that
would sit on it and determine whether something has actually
happened, that a doctor has provided a billing that is
inappropriate. We would ask them to instigate the process from
this end; in other words, have experts look at it from that point
of view.
In the audit we also ensure
that those processes are in place; in other words, that it
doesn't just rely on our audit to identify those instances but
also that their own staff have a process to follow when they find
instances where they have concerns that should be brought
forward.
Specifically, from then on,
an investigation starts and processes start. A while back-I don't
know how many years back-we had, for example, a doctor billing in
such a way that he virtually didn't sleep all week. He charged so
many hours that we didn't know where he took the time from, that
sort of thing. But all these billings must be supported of course
by medical records, identification of the patient and what
services were rendered.
Ms Frances Lankin
(Beaches-East York): To follow up on that, why is
identification of the patient necessary for your office? For
example, you could have the record; it can be identified by, say,
an OHIP number. You don't need the name and address and that kind
of information, do you?
Mr Peters:
Absolutely right. That is quite correct. The only problem we have
found with the old numbers, as we did in hearings on it, is that
the process is now being tightened up, I think partially because
of findings we had in 1992. For example, if you just had a name
and an initial, you could find yourself in the possession of
eight OHIP cards. There was a street value for these cards. They
could be sold.
We had an incident, for
example, in one hospital where a pregnant woman presented a card
and only by accident the nurse identified-she said, "How did you
do this? You gave birth about three months ago." On investigation
it turned out that a woman had simply passed off her card to a
sister from another country who then came.
Ms Lankin:
That would be something the forensic investigators in the
Ministry of Health would be notified of or there would be another
investigation. For the purposes of audit, is there a requirement
for you to see the patient's name attached to the actual OHIP
billing record?
Mr Peters:
Only one of efficiency, because what we would hate to have
ministry staff do is, for example, if we want to look at 100
doctor's billings, that they would have to go through and
obliterate all the personal identifiers in it. What we have
agreed to with the privacy commissioner is that we can indeed see
the name, but that's as far as it will go. Actually, they were
more generous with us than I thought. I thought we would be in a
research-only mode, if you will, but they said-that's the privacy
commissioners' ruling-yes, we can retain the records in our
working papers provided we obliterate all information that
personally identifies that individual, including, incidentally,
the health card number.
Ms Lankin:
That probably speaks to the issue of technology within the
Ministry of Health and how these records are stored and
maintained. With a different technological set-up, they would be
able to provide you all of the patient's OHIP payment schedule
for a particular doctor without the patient's name being attached
to it. Because all you need to see is what that doctor is doing
and what those records are, right? Is there anything in your
audit process that would relate it back to an individual
patient's name?
Mr Peters:
It would to some extent, because if you look at Bill 159 again,
section 14 identifies that we have the right, for audit purposes,
to match computer records. If the name happens to be a critical
field on which we need to match, then we should have the right to
do that. That is provided for in the bill. I think it's section
14(3) of Bill 159.
Ms Lankin:
Would it be satisfactory, if in the majority of cases in doing
audits of OHIP it is reasonable to look at the records without a name, that if a
particular kind of audit required the name, you go back to the
ministry? It would be like two steps, a higher level of access to
that information.
Mr Peters:
That would be quite fair and that could be built into the act,
but it is vital to us that it shall be disclosed. In other words,
we would consider it a scope limitation if we couldn't have
information to complete our audit.
Ms Lankin:
So whatever information is absolutely required must be guaranteed
by the legislation, but it can be done in such a way at every
step along the way to protect the personal health information of
someone and their personal identifier, until such time as the
nature of an audit requires that piece of information.
Mr Peters:
Very much so, because one of the things that is paramount under
our legislation is that we can follow payments out of the
consolidated revenue fund, and we really are looking at all
situations where there is a health service provider. Virtually
all health service providers must support their demand for public
money from the taxpayer with an identification of the services
they render. In most instances that information includes the
identifier of the people who ultimately receive the service. If
this chain were broken, we could not perform our duties under
section 9 of the Audit Act, which is to follow properly where
taxpayers' money has gone.
Mr Bob Wood (London
West): Has the privacy commissioner seen your proposed
amendment and does she endorse it?
Mr Peters:
Yes, absolutely. As I said in my presentation-and I will provide
it to you-I have wording here that was provided by Ms Cavoukian's
office.
Mr Wood:
Does this give you any greater power than the federal auditor has
in terms of access to information?
Mr Peters:
No, it does not. It is a straightforward process.
Mr John O'Toole
(Durham): Thank you, Mr Peters. I have two small
questions. I'm wondering if Bill 159 will give the minister or
the ministry more power to manage, measure and report program
effectiveness. Will Bill 159 give the ministry more power to
manage and control the effectiveness of the different
programs?
Mr Peters: I
can't answer your question because I have not reviewed Bill 159
for that purpose.
Mr O'Toole:
A very short question here is, do you think that paper records
are more or less secure than digital records?
Mr Peters:
No, they are as secure, we would think.
Mr O'Toole:
Paper and digital are both the same level of security in terms of
general access?
Mr Peters:
It's a rather interesting question and I think you particularly
may appreciate the answer. If information is properly
password-protected and the system security is properly exercised,
I would consider computer records to some extent safer than paper
records. But that is a big "if" and this is something we look at
continually as to whether there is adequate security over the
computer systems.
Mr O'Toole:
Isn't that where we generally have to go? Whether it's at the
federal level or the provincial level, or in fact the municipal
level, the way information moves today, that is an inevitable
consequence of the technology and the way business is transacted
today.
Mr Peters:
Absolutely, and therefore every action must be taken by
ministries and agencies and crown-controlled corporations to
ensure that those systems are secure, because it is a fact of
life that much of the business of government today could not be
carried out without adequate information technology support.
The Chair:
Thank you, Mr Peters. We appreciate your coming before us here
this morning. Good luck in public accounts.
Mr Peters:
Thank you. Just a quick question: was the committee interested in
Ms Cavoukian's-
The Chair:
Very much so, please. In fact, you can leave that with the clerk.
Thank you.
Ms Lankin:
Is there a copy of your written submission as well that could be
circulated?
Mr Peters:
Yes, there is one, but it has to be checked against delivery.
0930
ONTARIO MEDICAL ASSOCIATION
The Chair:
Our next presentation will be from the Ontario Medical
Association. Good morning and welcome to the committee.
Dr Albert
Schumacher: Thank you. Good morning. I'm Albert
Schumacher, President of the Ontario Medical Association and a
family physician from Windsor. Barb LeBlanc from the OMA staff is
with me to assist during the question period.
I come before the committee
today with some ambivalence, since it is not clear to me that
Bill 159, at least in its present form, provides a useful frame
of reference for our dialogue. After this committee received
technical briefings from the federal and provincial privacy
commissioners, the OMA hoped that the formal committee process
would be delayed so that the Ministry of Health and Long-Term
Care could redraft the bill in order to address the serious
concerns that were raised.
We supported this approach
for a couple of reasons: first, it seemed like a constructive way
to go and, second, it meant that we wouldn't have to sit before
you today and state, in no uncertain terms, that we think Bill
159 is not an appropriate piece of legislation as it is written.
The OMA has been actively, and we believe constructively,
involved in health privacy since we began this process in 1995,
but we are feeling extremely frustrated that we've seen very
little movement on the key issues. Let me be clear: we support
the need for this type of legislation, but if, and only if, it is
substantially changed.
Doctors and patients are very
disturbed by this legislation for a number of reasons, not the
least of which is its impact on the very heart of the
doctor-patient relationship. I am very uncomfortable when I hear
ministry officials and others talking in very impersonal terms
about their information
needs, without appearing to realize that for my patients this
isn't about bits of data; it's about their innermost emotional
and personal secrets. It's about a bill that would allow the
government to have access to those secrets with no patient
control.
As a physician, I am in a
unique and privileged position of trust. People tell me things
that they do not readily share with other people, even their
closest family and friends. They tell me things that they're
embarrassed about, like parental abuse; they tell me things
they're fearful of, like the fact that the chest pains they've
had may affect their job status; and they tell me things that
might cause them severe stigma if known publicly, like alcohol or
drug abuse. They also talk with me about matters linked to their
genetics and their family history, things that would have
repercussions for their entire family if known. Patients don't
share this information with me casually, but they do share it
because they know that it's necessary so that I can help them.
They also know that I have a duty to maintain their
confidentiality and that their secrets are safe with me. That
bond of trust is critical to the practice of medicine and must
not be underestimated by this committee. Without it, patients may
be less likely to share vital information with their doctors. I
worry that if you don't give me good information, I can't give
you good care.
As we look at the Personal
Health Information Privacy Act, we should keep foremost in our
minds the fact that patient information is shared in a very
sensitive and personal context, and although we might imagine
many different and interesting uses for the information, it is
not a commodity for common use and trade. In its current form,
Bill 159 sets the stage to open patients' medical information to
unprecedented access and to undermine the trust relationship that
exists between physicians and their patients.
The government correctly
argues that it needs information to manage the health care system
and to more effectively plan for the future. I believe it's
critically important that we move forward to utilize information
technology in order to improve patient care and system
management. I do not believe, however, that the development of
information technology should come at the expense of patient
privacy.
Despite having asked
repeatedly, the OMA has yet to receive a clear answer as to why
the minister, the ministry and the district health councils need
complete access to patients' charts for planning purposes. The
ministry can capture all of the information it needs for planning
by using sophisticated epidemiological information. They do not
need access to identifiable individual patient information.
The same holds true for
system management. Information that demonstrates patterns of
usage by demographic cohort and geographic area provides very
useful information for the ministry to fulfill its legitimate
planning and management functions. The government does not need
to give itself the power to force health care providers to
surrender private patient records for these purposes.
Bill 159 also gives the
government the power to regulate how patient information will be
coded and stored and with whom it will reside. The OMA believes
that these are important policy questions in their own right and
should not be buried in the vast regulation-making powers of Bill
159. The government should not be able to force the
standardization of patient records or to force all patient
information to be stored in massive government data repositories.
Instead, the collection of data should be done through a
consensual process involving both the physicians and, most
importantly, the patients.
I'd just like to return to
my previous point relating to ministry access to information for
a moment and to clearly state for the record that the OMA does
not support the provisions of Bill 159 that would allow the
government to force the disclosure of patient charts that are
held by physicians. I would like to reiterate in the strongest
possible terms the fact that the OMA objects to section 31 of the
proposed act and believes that it must be deleted entirely. The
OMA does not believe that Bill 159 has any possible claims to
legitimacy as a privacy bill if it does not rectify the sweeping
intrusion by the government into its citizens' personal lives.
This legislation should be about the protection of data and not
the collection of data.
The OMA has prepared
extensive written comments on Bill l59 which have been
circulated; however, the more closely we examine the legislation,
the more we realize that we don't need to simply rewrite one
section or another of the bill. Instead, we need to start by
fundamentally rethinking the underpinnings of the legislation.
The OMA remains committed to provincial legislation that is
specific to health care, and we cannot and do not support Bill
l59 in the form that is before us.
I recognize that I have not
addressed many of the specifics in Bill l59 in the time allotted
to us today, but I hope that my comments have helped committee
members to more clearly understand the strong stand that
physicians take on this issue as advocates for our patients. I
would be pleased to use our remaining time for questions.
The Chair:
We have about three minutes per caucus. This time we'll start
with Ms Lankin.
Ms Lankin:
Thank you very much. I appreciate your presentation. Yesterday we
heard from a member of your association, Dr Franklin from London,
who took a very different position and suggested to us that the
privacy requirements in Bill 159 were onerous, in particular for
group physician practices, although it would be difficult for
sole practitioners as well. He was of the opinion that there
would be requirements for additional security and those sorts of
things. I have to say it left most of us feeling very
uncomfortable about how private our records are now in doctors'
offices.
I take from the
presentation you made today and from the comments you made
earlier that the OMA, representing doctors, by and large feels
that it's a key responsibility of a physician to maintain patient
confidentiality, that
patient-doctor relationships are reliant on that. At this point
in time, I think you would disagree with the presentation we've
heard from Dr Franklin then.
0940
Dr
Schumacher: Again, not having heard or read his
transcripts, I want to reiterate that the first premise of any
physician in practice is to do no harm. We certainly know that
the information contained in probably everyone's chart in some
way or another can harm that patient, so one of our first duties
is to make sure that absolute confidence is maintained.
On the issue of how
strongly you have to lock up records or how many locks on the
doors we've had, on a practical basis we have not, over the last
20 years that I've been in practice, seen violations of this that
have certainly come to our attention in any great way.
Ms Lankin:
Let me go on to another issue then. You addressed in your
presentation support for the need for good information for health
systems management. I think we would agree strongly on that. The
OMA is involved in participating with the ministry on that; also
for good epidemiological research, the kind of development of
peer practice, best practices, those sorts of things. We've been
told that there are certain circumstances, both in
epidemiological study and in systems management, where
identifiers are going to be required to do longitudinal studies
in order to provide good information. Do you accept that? Do you
see any circumstance where identifiers are going to be required?
If so, are they the rare minority? What's your opinion on
that?
Dr
Schumacher: None would come to mind to me that I could
describe, so it would certainly have to be something very rare
where you would require that to be followed. Certainly in those
cases where that would be required, I think it would be paramount
to have written patient informed consent to have that happen. But
none come to mind.
Ms Lankin:
Let me take this one step further. In your defence of protection
of privacy of information, in the previous draft of the
discussion paper there was the concept of the lockbox. It has
been said to us that it should be the patient's right to keep
information from you as the doctor, for example, if we are aware
of the consequences of that, if we are aware that that means you
may not be able to provide the best diagnosis and the best health
care, but in a system that's not paternalistic, that is our right
as an individual, to control our private information. Is the OMA
supportive of a lockbox provision in the legislation?
Dr
Schumacher: We are not supportive of the lockbox. We
certainly understand the concerns that you raise about the
sensitivities of information and not sharing it; however, we are
frequently required to seek other opinions, consultations from
specialists, where certain things are absolutely critical to the
understanding of a patient and how you'll move that forward.
Again, I think that in the transmission of that information one
tries to certainly be succinct and to be to the point. However,
just as you would treat someone who is a diabetic quite
differently if you're a specialist, that's a piece of information
you really can't leave out in the even two-sentence discussion of
that patient. Similarly, in many circumstances other diagnoses,
whether they be heart disease or positive HIV status or other
important indicators that affect a whole variety of other
conditions and treatment, can't necessarily be well withheld. So,
no, we don't agree with the lockbox on that basis.
Mr Wood:
Would you support a provincial act that was substantially similar
to the federal act?
Dr
Schumacher: As this committee is aware, we certainly had
problems with the federal legislation. We would like to see a
provincial act that would be similar to the federal act so that
we could beat it out and have our own act in Ontario. We have
some common concerns about the federal act as it's written and we
would certainly look forward to an act that would not be ruled
substantively dissimilar so that we would be ruled out of order
by the feds.
Ms Barbara
LeBlanc: I think the other thing is that we're
supporting a provincial scheme partly because the federal
legislation wasn't drafted with health care in mind and so it
doesn't always fit very well. One of the positive things about
Bill 159 is the fact that it allows information to move for
health care purposes in ways that we think it needs to.
Mr Wood:
In 30 seconds, could you describe what changes you'd like to see
in the federal act and a provincial act, just to touch on the
areas very quickly.
Ms
LeBlanc: I don't think we really have any opportunity to
change the federal act.
Mr Wood:
What I'm saying is, in the drafting of the provincial act, tell
us what changes from the federal act you would like to see.
Ms
LeBlanc: I think the first thing is that the federal act
requires that there be a consent each time information moves
within a system. Obviously in health care, among health care
providers, that's not necessarily reasonable enough for the
hospital circumstance, for example. That's a significant
issue.
The other thing that's
important, and I'm not sure how we're going to deal with it, is
the consent question. The federal act deals with consent. The
provincial act also deals with informed consent, and we're going
to have to grapple with how we define that. I think those are two
of the big issues.
Mr
O'Toole: I have a couple of very quick questions. You
would agree that in the profession information is shared between
practitioners today?
Dr
Schumacher: That's correct.
Mr
O'Toole: And it's shared in various formats?
Dr
Schumacher: Yes, it is.
Mr
O'Toole: And for very ethical and professional reasons
always.
Dr
Schumacher: That's right.
Mr
O'Toole: Is the patient always informed?
Dr
Schumacher: I believe the patient is usually aware.
Certainly when I consult with a consultant, they're aware that
I'm going to transmit a referral request or a letter that accompanies that. The patient
will usually ask that the other pertinent documents go forward.
So there is usually patient involvement and implied consent in
all of those transactions.
In the areas that go
outside of my transmitting information to another physician, when
it deals with an insurance company or another third party, that
certainly requires written consent by the patient. I think most
physicians take that further. They provide a typewritten report
based upon that written consent. But when the entire chart is
requested by the insurer or by a lawyer, physicians will usually
go back and check with the patient that that's indeed what they
wanted. There's a lot of difference between your entire record
and what I transmit for the purposes of a car accident or a
lawsuit.
Mr
O'Toole: I just have one further small question. On page
2, in the second last paragraph, you go to some length to explain
that the government shouldn't be able to standardize patient
records. I find it inconceivable that there isn't some uniformity
for the transmission, either electronically or in paper form.
Without that, the system is completely incomprehensible. If you
are insisting that this enforced standardization isn't acceptable
to the OMA, what is?
You are sharing data,
digital and otherwise, today. You have a format. It's called a
language of some sort. I find it incomprehensible that that would
be a dismissive part of this legislation, given the fact that
today is already here digitally, and if it isn't, they'd better
get their heads around it, in my view.
If that can be used in some
critical way to be more accountable in the system, even if it's
in digital format, without the patient identifiers, there is some
risk that Erik Peters or others could make some assessments based
on this kind of data format much more easily than some years ago.
Do you follow the line of thinking? Not only that, it should be
uniform across Canada, in my view; Canada shouldn't have
different codes in every province. I'd like you to respond to
that.
Dr
Schumacher: Sure. Let me respond first of all by saying
that even with the data that OHIP has tried to organize around
diagnostic coding, this has not gone extremely far or served the
patient very well, especially from the fact that typically in my
office I'm seeing the average patient for three or four diagnoses
at the same time and actually treating all three or four of those
things. There's only one coding that OHIP can accept or is even
interested in. In fact, the statistical data from that code has
never been very good because of the way it has been managed. So
it is not as good as the information in the hospitals.
Second, a lot of innovative
charting has been developed, not by the ministry or by the
government but indeed by physicians. I would point out and
highlight the well baby record used in Ontario, which was
developed by two family physicians in Goderich, as an excellent
way of charting and managing our newest residents.
Similarly, the maternity
documentation is something that's undergoing continuous review,
that is being developed and pushed forward. It's a standard
that's taken up by all the delivery rooms in the hospitals and
enforced in that way.
I think there is a lot of
innovation that is always moving forward in record-keeping to
make it not only more patient-friendly but physician-friendly and
in a form usable by all. One would hate to see it very limited or
constrained in any way as to affect progress.
0950
Ms
LeBlanc: Just to add to that, the OMA is working with
the ministry on developing the core data set emergency health
records, and we think that standardizing certain information is
very useful. You have to realize that what we're talking about is
the entirety of the patient chart.
Mrs
McLeod: I have one question and then a question from my
colleague. I completely share your concerns about the breadth of
directed disclosure, where the minister can require you to
disclose confidential health records. I think the breadth of that
in the bill has raised some questions about what is the
government's intent in bringing forward the bill-is it really to
get better access for government to health information?-as
opposed to the stated intent, which I think you would support,
which is the assurance of health information among the health
care professionals that need to share that information for the
better management of the patient.
You oppose the lockbox,
which is in the federal legislation. Do you see the lockbox as
inhibiting the ability to share that needed information? You seem
to suggest that. Is that your primary concern about the federal
legislation and is it therefore your main reason for feeling that
Ontario legislation is needed, to ensure that we don't have a
lockbox through the federal legislation that would prohibit the
sharing of information? If that's not the primary reason for
Ontario legislation, what gap do you think is there that we need
legislation to fill right now?
Dr
Schumacher: I think the reason for requiring the
legislation-and you asked a bigger question going back-is that we
need to make sure that health information which is now collected
and dealt with by many people other than doctors, nurses and
hospitals is treated in the same way with the same constraints on
it and the same attention to privacy that my profession has dealt
with over the last 200 years in Ontario. We know that the
information in many other people's records will contain many
elements that are very similar, so we want to make sure that in
the health context that's taken into account.
The lockbox is not the only
concern as far as the federal legislation goes. Certainly there
are logistical problems with going into a record and having two
parts, the secret part and the not-secret part, that can be
shared and disclosed. As I mentioned, sometimes the secret part
is very important and critical for many other areas of care. I
think Ontario needs its own legislation, because I've always felt
that Ontario is one of the forerunners in the provision of health
care in Canada. We certainly lead many of the other provinces in
our developments, in our technology and so forth, and I hope we
continue to in the future. I think it's important that we have our
own health privacy legislation for that reason. I am adamant in
seeking the protection of the patient as something that actually
works.
Mr John Gerretsen
(Kingston and the Islands): I'd like to ask you a
question with respect to a presentation that was made yesterday
here. There was false information in medical records of a doctor
who was convicted of fraud. What is the OMA's position on that?
Do you support the idea that obvious erroneous information, as a
result of court cases etc, that's contained in a patient's file
should be deleted by the ministry as a matter of course, rather
than the lengthy process that this individual had to go through?
There are still no assurances that the erroneous information will
be taken from his file. Does the OMA have a position on that kind
of situation?
Dr
Schumacher: It's certainly our position that in cases of
fraud, OHIP needs to deal with and correct that information. That
should be done without any lengthy delay or process. I can tell
you that the medical record kept by any physician who has been
charged with that kind of fraud on a criminal basis becomes
completely irrelevant and would be ignored by anyone else in my
profession. Certainly, any insurers or other people who may have
contact with that need to treat that information in that same
fashion.
Mr
Gerretsen: You've made 23 recommendations here in your
lengthier report. Have you shared these with the government
before and have you had any response to them at all?
Ms
LeBlanc: We've been involved in this process for five
years now and this is merely the latest iteration of concerns
that have been on the table several times at this stage of the
game. We've been dealing with Ministry of Health staff very
closely.
The Chair:
Thank you very much for making your presentation before us here
this morning.
ONTARIO PHARMACISTS' ASSOCIATION
The Chair:
Our next presentation will be from the Ontario Pharmacists'
Association. Perhaps we could get everyone to take their
discussions outside, please.
Welcome to the committee.
Again, we have 20 minutes for your presentation, for you to
divide as you see fit between either an oral presentation or a
question-and-answer period.
Ms Barbara
Stuart: Good morning, Mr Chairman and committee members.
My name is Barbara Stuart. I'm the CEO of the Ontario
Pharmacists' Association. Thank you for allowing us to make our
submission today.
Before we begin, I'd like
to introduce our delegates. To my left, Sal Cimino is a
practising licensed pharmacist and is the chairman of OPA's board
of directors. To his left is Gerry Cook, also a practising
licensed pharmacist and a member of the executive committee of
OPA's board of directors. To my immediate right is Holly Rasky,
who is our director of government relations and general counsel.
Ethan Poskanzer, to Holly's right, is our external legal
counsel.
In terms of who we are,
we've included in your brief an overview of OPA. I think most of
you know who we are. Also included for your reference are two of
our previous submissions that we've made to the government on the
issue of the privacy legislation.
We have a few concerns, and
we'd like to address those this morning. There are only about
three or four in number, so we'll be brief.
We support the need for
legislation which establishes clear rules respecting the
confidentiality of health information, the circumstances in which
disclosure is permitted and the necessary requirements to obtain
patient consent. We also recognize, though, that the requirements
for patient confidentiality should not impede the ability of
health care providers to provide needed medical care to patients.
As a result, we support the legislation's goal of safeguarding
the privacy rights of individuals, while at the same time
ensuring that health care providers have ready access to personal
health information.
We are concerned, though,
that some portions of the act are unclear or too broad, thus
defeating these purposes. I'll go right to our first point of
concern. It refers to section 29, the ability of pharmacists to
access needed health information from prescribers. First and
foremost, it is essential that pharmacists, in order to perform
their role in the health care system, be able to obtain all
health information necessary to allow pharmacists to do four
things: (1) to provide optimal patient care; (2) to determine
whether the patient meets criteria for government-related
programs; (3) to be compensated for their services; and, (4) to
comply with all legal requirements. Section 29 of the act should
be revised to clearly provide that prescribers may provide
personal health information to pharmacists for all of these
reasons.
The problem is that the
current wording of section 29 could be interpreted as only
allowing the prescriber to release this information so that the
prescriber can get paid. It is not clear that the language
authorizes one health care professional to release information to
another so that the second health care professional may obtain
reimbursement. As a result, it is not entirely clear that a
physician is permitted to disclose health care information to a
pharmacist under section 29 so that the pharmacist may obtain
payment. Further, it's not clear that such disclosure is
permitted where it is necessary for a pharmacist to comply with
relevant statutory obligations.
A related concern is that
other legislation that impacts on health information, such as the
Medicine Act, needs to be reviewed and revised to ensure that a
single, clear set of rules applies to the disclosure of personal
health information. There is little point in allowing prescribers
to provide information to a pharmacist under one act while
another act may be interpreted as limiting or prohibiting such
disclosure.
1000
Under the regulations to
the Medicine Act, it is not considered to be professional
misconduct for a doctor to give information about a patient, including
access to the patient's records, to a pharmacist for "the purpose
of providing care to the patient." What is meant by the phrase
"providing care" seems to vary, depending upon the particular
physician. Unfortunately, many prescribers take a narrow view of
what information they can or will provide to a pharmacist. This
can have a significant impact on the pharmacist's ability to
provide optimal care, follow the law and obtain payment for his
or her services.
The reason section 29 is so
important is that in order to fill a prescription lawfully and in
order to ensure proper payment, the pharmacist may need to know
why the prescription was written. This is particularly true when
dealing with the interchangeability of products on the Ontario
Drug Benefit Formulary.
It is essential that a
pharmacist be able to obtain reliable information from the
attending physician since an individual patient may not be aware
of the diagnosis or may forget important details of treatment.
Further, the pharmacist may have no direct interaction with the
patient, whose prescription may be presented by a person acting
on the patient's behalf rather than directly by the patient at
the pharmacy.
While pharmacists have a
good working relationship with the medical profession, our
members tell us that prescribers often refuse to provide them
with necessary patient information, stating that it would be
professional misconduct to do so as the information is related to
questions of reimbursement and not relevant to patient care.
However, as we just explained, pharmacists require this
information to be able to dispense medications following the
rules established by the government and to provide optimal
patient care.
Just as it is critical for
physicians to have all relevant medical information to permit
them to perform their tasks, so too is it critical for
pharmacists to have all relevant information to permit them to
perform their tasks. Prescribers, given their role in the health
care system, generally are the gatekeepers of patient
information. It is essential, however, that the law permit
professionals, who must work as a team, to have access to
necessary information in order to adequately and lawfully fulfill
their role as health care providers.
Item number 2 of concern is
the definition of "operators." I would now like to turn to the
difficulty we foresee in determining which individual in a
particular pharmacy is the health information custodian for the
purposes of the act. This difficulty arises from the term "a
person who operates" in paragraph 4 of the definition of health
information custodian. Bill 159 deems "a person who operates ...
a pharmacy" as a health information custodian. The meaning and
extent of who is included in this definition has a significant
impact on the interpretation and application of the entire
act.
The problem is, in the case
of a pharmacy, the person who operates the pharmacy could be an
individual store owner; two or more individuals who are in
partnership with one another; a corporate head office, as may be
the case for a chain of stores; or a non-pharmacy,
non-health-care-related corporation, such as a supermarket which
operates a pharmacy in one or more of its stores.
The definition of "a person
who operates ... a pharmacy" will impact on how the act applies
and is interpreted, as the operator of the pharmacy is the
custodian of the personal health information.
It may be useful where
there is more than one person or entity which may be considered
to be the health care custodian to allow the individuals to
designate among themselves who will be the health care custodian
for the purposes of the act in order to avoid these
difficulties.
A related concern is the
implications of the definition of "person who is employed by or
in the service of a health information custodian." Section 16 of
the act deems these individuals as acting on behalf of the
custodian "when exercising powers or performing duties for or on
behalf of the custodian." It does not appear that these powers
and duties are required to be tied to the provision of health
care. Therefore, if the custodian is a supermarket, then
employees who are not involved in the providing of health care or
related services, such as the butcher, may be deemed to be acting
on behalf of the custodian. We are concerned that this is too
broad. Is the supermarket supposed to ensure that the butcher
does not have any access to personal health information, and
ensure that if he or she does, that the collection is done in
accordance with the rules? What is the butcher to do if Mrs Smith
decides to tell him or her about her arthritis while the meat
order is being filled?
Consideration should be
given to including a provision which limits the application of
the act to persons who perform services related to the delivery
of health care on behalf of the custodian.
Item 3 of our concern is
the requirement to keep the identity of individuals separate from
personal health information, which is subsection 12(5). We are
concerned that the requirements of this section may result in
compromised patient care. This section requires custodians, when
using, collecting or disclosing personal health information, to
do so in a manner, to the extent reasonably possible, that
conceals the identity of the individual. We appreciate that the
section includes the proviso that the purpose of the collection,
use or disclosure of the information still be met. However, these
requirements are too onerous and ambiguous in the context of a
pharmacy. We recognize it is important to ensure that such
information is kept confidential and secure. However, requiring
the segregation of all patient information would be onerous,
time-consuming and potentially dangerous for the patient; for
example, separating the name from the medication on the
prescription bottle.
Item 4, and it's our last
item of concern, is duties with respect to accuracy, and again
that is in section 24(2). It's the final concern, because we feel
it's not reasonable to require the health information custodian
to ensure that the information is "accurate, complete and not
misleading" when disclosing the information. A pharmacist cannot,
in all circumstances, ensure that the information provided to him
or her meets these standards since the pharmacist often is required to rely on others,
whether it is the patient, the prescriber or another source, for
that information.
Mr Chairman, those are our
comments. Again, I thank you for the opportunity to present them
to you. We would be pleased to answer any questions.
The Chair:
That leaves us three minutes per caucus for questions. This time
we'll start with the government.
Mr Wood:
That was a very clear and helpful presentation. I have no
questions, but thank you very much for coming.
Mrs
McLeod: I appreciate a number of points you have raised
that we hadn't heard before. One of them is that whole issue
around payment, which I hadn't understood until I realized that
you're now dealing in some cases with differential uses of
certain drugs and the only way you can find out whether or not it
is in fact on the drug plan, whether the individual is going to
be covered as well as whether the pharmacist will get paid, is to
call the doctor and find out whether or not this is under the
formulary a prescribed use of that drug. Thank you for bringing
that to our attention.
I was a little less sure
about that person who operates a pharmacy question because it
seems to me-God forbid I should be speaking for the government,
but the answer the government might give is, yes, that owner of
the supermarket is required to make sure that the health records
that are kept in the pharmacy section are secure and that there
is not access to the butcher of an actual record. I would
appreciate some further comment on that.
Also, we've had a number of
presentations from the colleges, including the Ontario College of
Pharmacists, and one of the concerns they have is that the
colleges should be exempt so that they can carry out their
regulatory functions and they can access the records they need
for that purpose. My main question, among others I'd like to ask
you today, is, if the colleges are exempt, as the regulatory
bodies, and we have Ontario legislation that deals with
front-line providers, does that create two sets of rules, in your
view, that the providers are operating under, or is that
something you'd be fairly comfortable with?
Ms Holly
Rasky: Thank you for the question. I don't think there
would be a problem with there being two sets of rules, because
the purposes of the colleges' business would be different from
the fundamental business of the health care providers. I
understand that they are regulated under the Regulated Health
Professions Act, and if it's their position that they shouldn't
be covered under this legislation, as I understand that to be,
then I don't think we have a reason to disagree with that. There
are safeguards in place.
Mrs
McLeod: Could I ask you too, if I have another moment,
about the lockbox provisions that are in the federal legislation.
The federal legislation, as I understand it, would certainly
apply to pharmacies if we don't have Ontario legislation. Do you
see the provision of a lockbox as making it difficult for
pharmacists to be able to contribute fully to patient management,
or, for example, if you think somebody is doctor-hopping with
drug prescriptions, can you spot that through the prescribing as
opposed to having broader access to the patient records?
Ms Rasky:
I think we were pleased to see the removal of the lockbox
provision from the provincial act. I think it's dangerous to
have. Patients may not necessarily appreciate the information and
the sensitivity of the use of that information in their own care.
For example, you may not be aware, but one pharmacy cannot
provide information to another pharmacy, even if they're in the
same chain. If you have a situation where a patient put a lockbox
around certain information in one store and the other store is
trying to fill a prescription, it's very hard then for the
pharmacist to identify potential dangers between interaction of
the possible medication, or other information a pharmacist might
need to get the information to provide the best treatment. It's
important that the pharmacists and the health care providers need
to have a certain amount of information to provide sufficient
patient care and I think that's just a very important principle.
That's part of the balancing between a patient's rights and the
ability of health care providers to do their job.
1010
Ms Lankin:
Two or three things. Let me start at the tail end of your
presentation. I'm perplexed by your concerns around section
24(2), which says that people who are going to disclose
information have to take reasonable steps to ensure that it's
accurate. Presumably your records contain information about
prescriptions that have been written and have been filled, and
the registration information in most cases. Presumably you take
reasonable steps as you're entering that into your system when
you're talking to the individual patient or the person presenting
on behalf of the patient. I am often asked, "Is your address
still such-and-such, Ms Lankin?" I don't understand your concern
about that section, that that's an unreasonable requirement.
Ms Rasky:
I guess it's a concern that arises out of, in particular, a
government program called the limited use program. Under that
program the patient is only covered for certain prescriptions
provided that they've taken certain medications, step-up therapy.
You don't get the big drug until you've tried other medication.
There is need for clarity with some of these programs about what
the obligation of the pharmacist is to obtain confirmation about
whether the patient has-
Ms Lankin:
That really has nothing to do with disclosing information. The
circumstances in which you disclose information as a health
information custodian are limited, right?
Ms Rasky:
Yes. I guess our concern is whether the obligation would extend
to actually phoning the physician to ensure that patient
information we got perhaps from the patient or one of the
patient's health care givers is accurate. It's hard to know what
"reasonable steps" means, that's all. Just some clarity would be
helpful.
Mr Gerry
Cook: The concern is largely with information we don't
receive at first hand but receive from a second party. We can't actually take the steps
to ensure whether that information is accurate or not.
Ms Lankin:
I think what most pharmacists do now would be deemed to be
reasonable, but it's something we could get the ministry's
interpretation of and that might give you ease.
With respect to your
concern about keeping the identity of individuals separate from
personal health information, again, this is a section that really
steps out in a number of ways and says "where possible." It's not
an absolute requirement. I would think all of us concerned about
the privacy of our health information would want all reasonable
steps to be taken. It says that if you can do it without private
health information, just on registration, do it just on
registration. If you've got to go the next step, take this
precaution. If you can do it by keeping separate the identifier
from that and it still meets the purpose of why you're collecting
the information, then do that. If the purpose of a pharmacy
collecting the information is to be able, when the person comes
back, to check and see what their prior prescriptions are and
ensure that there aren't any contraindications or whatever, I
can't see how anyone would oblige you under this legislation to
have taken the step and to keep the information separate. Again,
I don't understand the nature of the concern here. Is it
something you just need clarification on from the ministry and a
sense of ease about what's expected of you?
Ms Rasky:
I think that's exactly right. Our sense is that the legislation
is drafted to try and catch a number of instances, including
different kinds of health care providers. Our concern is simply
that the rules be clear, easy to follow and not interfere in
patient care. A clarification is really what we'd be looking for
there.
Ms Lankin:
My last question is with respect to your concern under section
29. Right at the beginning, section 29 indicates that a health
information custodian may disclose personal health information to
another health information custodian "if the disclosure is made
for the purpose of providing, or assisting in providing, health
care to the individual." Although we've had a number of
suggestions of amendments that should be made to that section,
you're saying you think what will happen under that is you will
only be given the information if it's for the purpose of payment.
Yet it says here, "for the purposes of providing, or assisting
in" the provision of health care. There may be a need for a
better understanding between doctors and pharmacists, but it
would seem to me that what you do is the provision of health care
and that you would be covered under that.
Tell me exactly what your
concern is, and would you also comment on the overarching
statement there where it says the person's custodian "may
disclose personal health information." We've heard a number of
comments that that "may" is too discretionary. Could you comment
on the discretionary aspect of it and comment on what your actual
concern is, given clause (a), which says you should get the
information?
Ms Rasky:
I think part of the concern is a drafting issue. I may be
overstepping, but my sense is the intention was to allow exactly
for the provision of the information, as you say. My concern is
that in the drafting it doesn't clearly appear to allow for the
provision of the information from one health care provider to
another for the purpose of that second health care provider to
get paid. It just says that they can release the information and
it could be-you see, as you read at, for example, 29(1) that you
can disclose the personal health information relating to an
individual, "(c) for the purpose of obtaining payment...."
Ms Lankin:
But sub (a)-
The Chair:
Sorry, Ms Lankin. We've hit our 20 minutes.
Ms Lankin:
It says, "for the purpose of providing, or assisting in" health
care.
Mr Cook: I
think the concern is that you wouldn't have needed a separate
section for payment if that was encompassed by (a). So payment is
a separate issue, and the problem is that while the legislation
is clear as to whom you provide the information to in (a), it's
not that clear as to whom you provide the information to in the
other sections. It's largely a drafting problem, but I think the
intent is to allow for the sharing of that information for all of
those purposes. It's just that in some cases they tell you whom
you provide the information to; in some cases they tell you the
purpose for which the information is provided.
Ms Stuart:
I would just add to that, if I may, very quickly that all three
questions that you ask really revolve around the broadness of the
wording. It's not so much that the content or the intent is not
understood; it's that when several different people read it or
try to understand it, they come up with different
interpretations.
The Chair:
Thank you very much for coming before us this morning.
PSYCHIATRIC PATIENT ADVOCATE OFFICE
The Chair:
Our next presentation will be from the Psychiatric Patient
Advocate Office. Good morning and welcome to the committee.
Mr Vahe
Kehyayan Good morning. My name is Vahe Kehyayan. I'm the
director of the Psychiatric Patient Advocate Office. With me are
Lora Patton, our legal counsel, and David Simpson, our systemic
policy adviser.
We would like to thank the
committee for its invitation to further consult on the proposed
personal health information bill. The PPAO is a quasi-independent
program of the Ministry of Health and Long-Term Care which was
created in 1983, in part to advocate on behalf of the psychiatric
patients in the provincial psychiatric hospitals, including those
recently divested.
We are here before the
committee to raise concerns with the proposed bill from the
perspective of our clients, who are the seriously mentally ill.
Although some of the issues raised by our office will echo those
of others, we hope to
provide this committee with some insight into the specific areas
of concern for our clients.
We strongly support the
government's recognition of the need for clear, effective
legislation that will protect the personal health information of
the people of Ontario. We also recognize the challenges in
creating legislation that enhances health care delivery while
ensuring that individual privacy is protected.
We also support the
decision to incorporate an impartial oversight body to ensure
compliance with the law and to resolve disputes. The selection of
the privacy commissioner to fulfill this role allows a single
point of contact for individuals seeking adjudication of
complaints and will allow a single body to review the
implementation, application and compliance with the law.
In addition, we are pleased
that the bill incorporates the concept of consent from the Health
Care Consent Act. The definition of consent as provided in the
bill requires that a valid consent be specific, informed,
voluntary and not obtained through misrepresentation or fraud.
These elements have a profound impact on the balance of the bill,
setting a high standard for an individual's choice in the
process. That high standard must be maintained in each provision
of the bill and remembered when drafting all exclusions to that
basic principle.
We believe that further
amendments are necessary to strengthen the bill's ability to
protect private health information and enhance public confidence
in the integrity of the health care system.
1020
Our submission which is
before you will primarily address three areas of concern: (1) the
erosion of consent-based disclosure; (2) the decreased access to
one's own personal health information; and (3) the lack of
sufficient enforcement mechanisms. I'm going to ask Lora Patton
to comment on these three areas.
Ms Lora
Patton: Good morning, Mr Chair, members of the
committee. As Mr Kehyayan has stated, I am going to begin
discussing the erosion of consent-based disclosure that we find
in the bill, and before we begin dealing with specifics I'd like
to take a step back and comment on the general thrust and the
purpose of the legislation.
The protection of
individual health information is fundamental to our clients.
Those suffering from mental illness continue to face
discrimination from many sources and unanticipated disclosures
could cause significant harm. Disclosure of information relating
to diagnosis, hospitalization and treatment could adversely
impact personal relationships, employment and insurance coverage,
as well as causing embarrassment due to the stigma still
associated with mental illness.
Beyond the potential harm
resulting from disclosure, the individual's inability to control
that disclosure and the inability to track potential distribution
erodes our clients' comfort in any protective legislation. Our
clients have an expectation that their private health information
will be protected and only disclosed with their knowledge and
consent. They have an expectation that the government does not
have unlimited access to that information and an expectation that
the government or health information custodians cannot pass that
information to other parties for undefined purposes.
This fundamental belief
that information will be kept confidential by a health care
practitioner is essential to maintain trust with the health care
system to encourage individuals to seek diagnosis and treatment,
and to confide sensitive information that may be necessary for
that treatment.
To illustrate the
importance of the public's trust, we can look to recent changes
to the Mental Health Act. In that act, new changes create
community treatment orders, or CTOs. CTOs can allow an individual
to remain in or return to the community by providing a
comprehensive system of treatment, care and supervision. A CTO
may be thought advantageous by the treatment team for a number of
individuals who would otherwise be required to stay in a hospital
for long periods of time.
One problem with the CTO
scheme, however, is the lack of protection surrounding personal
health information. At the time a CTO is being considered, a
physician may discuss that individual's health information with a
number of organizations, professionals or lay people in the
community. Consultations may take place with landlords, family
members and any other person who may be involved in the treatment
plan, all without the specific consent of the individual.
As a consequence of these
provisions, a number of our clients are extremely reluctant to
enter a CTO. While a CTO may provide increased freedoms and
access to specialized programs, our clients are concerned that
their information will not be properly protected within this
scheme.
Privacy legislation must
address the public's concerns relating to confidentiality and
ensure that specific, informed and voluntary consent is obtained
whenever identifiable personal mental health information is
disclosed. This bill, despite the specific provisions of consent,
as set out in section 21, fails to meet the basic premise that
disclosure requires consent and consequently it fails to meet the
privacy expectations of our clients.
The bill grants broad
powers to the Minister of Health and Long-Term Care to obtain and
disclose personal health information. Subsection 30(5), for
example, allows disclosure by the minister for the purpose of
managing the health care system. This clause exemplifies the
excessively broad drafting of exceptions to basic privacy
protections. It is unclear what types of services would be
included in the phrase "for the purpose of management of the
health care system," and it is unclear what type of programs
would be granted access through the regulations.
Section 30 of the bill
provides a number of such broad, undefined exceptions to
individual privacy rights. Although the general principles
contained in section 12 indicate that only the minimum amount of
information necessary shall be disclosed, it is uncertain on the
surface of the bill how
these protections will mesh with the balance of the
legislation.
Similar to the minister's
powers, under section 29 a health information custodian can
disclose information to a hospital or a physician, for example,
for the purpose of providing health care without the consent of
that individual. This section again fails to recognize individual
choice in the disclosure of information and that individual's
right to withhold information and take responsibility for any
withholding.
In addition to the powers
of the minister and health information custodians to access and
disclose information, the bill outlines a number of areas in
which consent is deemed. For example, section 30(1)(c) allows a
health information custodian to disclose information for health
screening programs unless specifically directed otherwise, by
either the client or the substitute decision-maker.
Similarly, section 29 of
the bill allows facilities to assume a patient's consent to
disclose his or her presence as a patient in the facility and his
or her general health status. Such opt-out clauses do not satisfy
the elements of consent as outlined in section 21.
Many of the PPAO's clients
may be acutely ill, and even if they become aware of the
negative-option consent provisions, may be unable to specifically
express refusal. Further, as a result of their illness, they may
not be able to understand the consequences or ramifications of
consent at the time of admission. It is unreasonable to place the
onus on the individual to initiate discussions and then express
his or her feelings regarding disclosure of information in any
circumstances.
As for our recommendations,
the PPAO recommends that the very structure of the bill be
revisited, with a consistent emphasis on consent-based
disclosure. We recommend that the legislation require a positive
act of consent prior to disclosures of any nature.
The definition of
"consent," which is already outlined in section 21, and the
limits on disclosure in section 12, are integral to the bill,
laying the building blocks for privacy. However, there are too
many exceptions, inconsistencies and unclear provisions to ensure
that these concepts will read as a fundamental section in its
interpretation. The PPAO recommends that the exceptions to
consent-based disclosure be carefully articulated in the bill and
the purposes of the exceptions be carefully defined.
The PPAO supports and
encourages the use of a locked box system, a system that allows
an individual the statutory right to block the transfer of any
part of his or her personal health information. Such a mechanism
resolves some of the concerns outlined above regarding
disclosures which are not based on consent.
In addition, we recommend
that forms which are executed consenting to the disclosure of
information be standardized, as is done with the Mental Health
Act in form 14. The consent forms must make clear the extent of
the information being released by the individual, the purposes
for which the information is being released and any limits or
conditions on the disclosure, with an expiry date for the period
that the release is valid for. There should also be a
standardized method for withdrawing consent within the
legislation.
Also fundamental to any
information privacy legislation is reasonable access to one's own
information. The proposed privacy legislation will replace
sections of the Mental Health Act with respect to patient access
to his or her clinical records. The current level of protection
enjoyed by patients must be continued. There is a detailed list
of the Mental Health Act provisions located in our written
submission. I believe it's on page 5, for your reference.
Under the Mental Health
Act, a facility must respond to a request to access a file within
seven days. This bill allows the health care custodian 30 days to
respond. Further, the health information custodian may delay a
response for successive 30-day periods at his or her own
discretion. We support the timelines that are currently available
under the Mental Health Act.
The proposed legislation
provides for a number of situations in which a health information
custodian can refuse access to an individual's file. Under the
Mental Health Act, only the Consent and Capacity Board has the
authority to withhold a record, and then only when there is a
demonstrable safety risk. Again, we would support provisions that
reflect the MHA.
The PPAO also recommends
that any person who is denied access to his or her own health
information be given independent rights advice, with clear access
to an appeal mechanism. We further recommend that the Consent and
Capacity Board be given jurisdiction to review complaints under
this particular section, as that board has particular expertise
in the area of mental competency.
The right to examine one's
own records may be further complicated by the potential to levy
fees for access. The cost of fees may be preventive to our
seriously mentally ill clients, as many are indigent and receive
social assistance. In addition to costs that may be charged to
simply view a record, costs may be charged to copy that record.
The PPAO recommends that no new fees be instituted to view a
record. We also recommend that there be a means of reducing or
waiving photocopying costs in accordance with a financial means
test where the cost acts as a barrier to access.
1030
The incorporation of the
privacy commissioner as an oversight body represents a
significant change in the enforcement structure of the bill.
However, the proposed legislation stops short of providing the
commissioner's office with sufficient powers to ensure compliance
with the legislation. The PPAO recommends that the commissioner
be given clear and full authority to conduct independent audits
of the policies and procedures of all health information
custodians. Power must be granted to allow full complaints
investigations. Finally, the commissioner must have the power to
enforce decisions and to compel compliance with the
legislation.
The PPAO also recommends
wide-based education to further promote compliance. Education
programs will assist all
people affected by the legislation, including health information
custodians, health care workers, government and the general
public, to obtain and understand their rights and
responsibilities under the act.
In conclusion, the PPAO
supports some of the steps taken to date with respect to this
proposed legislation. A bill of this nature is long overdue and
the momentum behind this draft document is encouraging. We
support attempts to strengthen this document, to make the changes
that are necessary while ensuring that the bill moves forward to
completion.
Prior to making specific
amendments to the bill, we ask that the committee take a step
back from the individual provisions and review the proposed
legislation as a whole. Section 12 outlines the guiding
principles, the context against which all other parts of the bill
are read and measured. These principles must inform the balance
of the provisions to ensure consistency and clarity.
Further, if the purpose of
this legislation is truly to protect individual privacy values,
the bill must be revisited with a view to ensuring specific,
informed and voluntary consent, as is outlined in section 21. The
current bill falls short of this value by allowing broad, cryptic
exceptions to consent-based disclosure and negative-option
consent. This issue must be answered before the public and
particularly the seriously mentally ill will have any confidence
that the health care system truly protects individual
information. Thank you.
The Chair:
That leaves us about a minute and a half per caucus, so one
question with preamble, two without. We'll start with the
official opposition.
Mrs
McLeod: How about half a preamble?
I very much appreciate your
presentation, because you've very thoughtfully raised some issues
that we need to think about.
I want to deal specifically
with the lockbox. You haven't called it a lockbox in your
presentation, but it's the ability of the individual patient to
say whether or not the record will be disclosed or will be
locked, or some part of it will be locked. You have said that in
emergency situations, under the Health Care Consent Act, which I
assume means competency-
Failure of sound
system.
Mrs
McLeod: -who the mental health professional believes is
suicidal but who is obviously competent under the Health Care
Consent Act and who, for all kinds of emotional reasons, is not
prepared to let that professional release information. Would that
constitute an emergency in which there should be an ability to
share information without consent?
Ms Patton:
If we're assuming she's competent and assuming that the
substitute decision-maker isn't involved, I think that may be a
circumstance where it may be appropriate. Again, just as a broad
hypothetical, I can imagine that may be an issue. In that
instance, however, the entry into the locked box would be written
down, recorded by the physician, and the patient would be
notified. So there may be circumstances like that when access can
be gained, but if the patient disputes it later, then the doctor
may have to answer to the circumstances in which-
Mrs
McLeod: It actually wasn't hypothetical; it was a case I
dealt with in my brief non-political life. It's one that really
challenges me around the issue of the lockbox, which I believe in
philosophically. I'd like to find a way to allow, in some cases
like that, an element of protection, even though it might seem
paternalistic.
Ms Patton:
I agree that in some cases there should be some mechanism for
opening that box, but I think ultimately it comes back to
individual choice and an individual has the responsibility. If
they choose not to provide history to their doctor, they're going
to take responsibility for what happens as a result of that
non-disclosure.
Ms Lankin:
I want to follow up on that as well. I suppose that happens every
day, that someone goes to a doctor and has a certain circumstance
and the doctor attempts to take a history related to that and the
individual chooses what information to share or not. You trust
that as a relationship builds, an individual is going to make a
decision as to what the doctor needs to know and/or what is in
their best interests. It does seem awfully paternalistic in a day
in which we're seeking out various kinds of complementary
medicines, alternative medicines, that in this one type of health
care under the health care system someone else determines what's
best for you.
On the other hand-and let
me throw another issue on the table-in this health care system,
which is provided collectively through our tax dollars, we have a
responsibility for efficient use of those dollars as well, and
where counter-interdictions, for example, lack of information,
where incorrect diagnoses based on lack of thorough review of a
chart or a piece of information being withheld could lead to
substantial complications and costs for the health care system,
is that reasonable as well? I'm genuinely trying to get my head
around this, because the individual privacy protection part of me
says, absolutely, it should be my right to say what I want known
and what I don't want known, but this is a system; it is not an
individual contractual relationship between one person and a
health care provider.
Ms Patton:
You're right. I think it is a balancing act, but I think
fundamental to the system has to be the individual control. My
concern is that if we take that away, we have patients who aren't
going to see their doctors and who aren't telling them that they
have issues or a history that may impact, and then we end up with
the same potential complications two years down the road if a
client is withholding that information and not going in for
treatment quickly and promptly. I think it has to come back to
the individual choice.
Mr Wood:
Would you support a provincial act that was substantially similar
to the federal privacy act?
Ms Patton:
The information I have regarding the federal act, I believe that
we wouldn't support it.
Mr Wood:
I'd like to ask you to briefly address the question of disclosure
without consent for research purposes. We've heard that there are
certain research projects, because of the smallness of the
sample, that you either
have to do without consent or you can't do them. If there were
proper oversight, would you support some provision for research
projects of that nature to be done?
Ms Patton:
I think some provision may be appropriate. The inclusion of the
ethics body was a significant step, but I think you may also add
a layer and have the privacy commissioner review any proposals
and ensure that all other steps have been taken before such a
proposal goes forward.
The Chair:
Thank you very much for making your presentation before us here
today.
1040
CARP
The Chair:
Our next presentation will be from the Canadian Association of
Retired Persons. Good morning and welcome to the committee.
Mr Bill
Gleberzon: Thank you very much for this opportunity to
talk to the committee. We appreciate it very much. Very briefly,
we now call ourselves Canada's Association for the Fifty-Plus.
We've retired the word "retired" in our name, but CARP still
remains.
Just to let you know very
briefly, CARP represents the consumer and, I guess, patient and
informal caregiver and non-professional point of view. We have
some 236,000 members in Ontario and almost 400,000 across Canada.
We're a non-profit organization and don't take money from any
level of government for operating purposes.
To begin, Bill 159 is of
great concern to 50-plus Ontarians because at one time or another
they will make up the majority of people affected by the
bill.
As we understand it, the
previous Minister of Health, Elizabeth Witmer, justified Bill 159
on the grounds that it would improve the effective implementation
of primary care reform, and we support that objective. However,
if that justification is still valid, then CARP believes that
Bill 159 as presently constituted strays far beyond its intended
purpose.
CARP's position on Bill 159
is that it should be limited and restricted to provide the
personal and health information to those professional health care
workers involved in providing direct health care to the patient
to whom the health information pertains, except in obvious and
clearly stated emergencies. The patient or his or her family or
substitute decision-maker must give explicit informed consent to
share this information. Those professional health care workers
who have legitimate access to this information must guarantee to
keep it strictly confidential.
CARP recommends that a
distinction between the personal information of a patient-that
is, name, address, SIN and other personal vital information-and
the patient's health information, such as the individual's
physical, physiological and/or mental condition, must be made.
This differentiation must be part of Bill 159 and applied to
anyone who is not involved in the individual patient's health
treatment or health care.
Integrated personal and
health information should not be available to the Minister of
Health, any bureaucrats, employers, insurance companies,
researchers, marketers, fundraisers or any other individuals or
groups not directly involved in the care or treatment of an
individual's health. We're talking about both the personal and
health-related information; that is, although health information
may be made available, there is no need to link it to the
patient's personal information.
As we understand it, OHIP
already has the authority to access and investigate medical
records of health care professionals that it reimburses for
services. This is done to ensure that the services claimed to
have been provided for reimbursement have indeed been provided.
But this information is accessed for accountability purposes
directed at the health care practitioner and not directly
concerned with the personal and health information of the
patient. In what other ways would having access to the personal
information of patients assist the Minister of Health or any
other politicians or bureaucrats in managing the health system in
Ontario, as the act states?
Employers and insurance
companies have no need for direct access to health records. Both
require only the confirmation of a professional health care
worker to confirm health status by employees or insured
customers. Similarly, researchers have no need for personal
information to undertake their health or epidemiological
research. The bill does establish a protective system to ensure
anonymity of subjects through the use of IDs that cannot be
traced back to the individual. If researchers do require
knowledge of a subject's personal information, the current
practice should be retained whereby the researcher can request
the custodian of the information to contact the subject either to
have the subject contact the researcher or to obtain the
subject's informed consent to have the personal information
provided to the researcher.
The bill rightly prohibits
marketers from obtaining personal information. It should extend
this prohibition to fundraisers. We assume that fundraisers for
health associations such as for the cancer society or the
diabetes association are intended in this context. The decision
to contribute money and/or time should be left to the voluntary
discretion of the individual. However, the same system that is in
operation for researchers could be put in place for fundraisers.
Moreover, CARP would accept the idea of providing a patient with
the option of deciding whether their name could be shared with an
organization for fundraising purposes through an advance approval
process that would include informed consent.
CARP recommends that the
provincial government provide sufficient additional funding to
institutions that need to establish the new position of custodian
of information and the staff and equipment required to support
this function.
CARP recommends that the
information and privacy commission, which we understand are
envisioned as two separate entities, should remain two distinct
officials and positions, each with a distinct office and staff,
in order to ensure that necessary checks and balances would be in
effect between the two
separate and potentially conflicting functions.
CARP believes that the
patient is the owner of their own personal and health
information; therefore, they should have easy access to this
information whenever they request it. They should only be charged
a minimal basic administrative fee, for example, to pay for
photocopying etc, when they want to access their own information.
This same principle should apply to substitute
decision-makers.
If an individual can prove
that the personal or health information in their record is
incorrect, the incorrect information should be deleted and the
correct information substituted immediately without any cost to
the patient.
Finally, we assume, but we
are requesting, that Bill 159 must be correlated with the federal
government's Bill C-6 to ensure that there are no discrepancies
or contradictions between the two bills.
Thank you very much.
The Chair:
Thank you. That leaves us about three and a half minutes per
caucus for questioning. This time we'll begin with Ms Lankin.
Ms Lankin:
Thank you. As always, I appreciate the input of your
organization.
One of the questions that
I've been trying to get clearer answers to as time goes along-and
the next presenters are CIHI so this is something maybe they can
answer when they come-is we're being told by researchers that
there is very important epidemiological research that does
require identifiers for, perhaps, longitudinal studies. We've had
a couple of examples but I don't have a clear grasp on it. I'm
still looking for that lightning bolt that says, "Aha, we
wouldn't have known this piece of information which is so
critical to all our health if we hadn't been able to do this kind
of research and had access to identifiable information."
If we get that example, as
a reasonable person I'd think in some circumstances that's going
to be OK, but there have to be a lot of safeguards. We're told
that the safeguards that are in place now, and proposed by this
bill, involve that kind of research being submitted to a
reputable, designated ethics committee who bend over backwards to
protect privacy and ensure anonymity unless there's no other way.
Do you think your organization is comfortable that in the rare
exceptions, if it can be proven that there's a need for
identifiers for that kind of common-good epidemiological
research, identifiers be used, or do you think it always has to
come back to consent, no matter what?
Mr
Gleberzon: At this point in time, as far as I know, it
always has to come back. Ethics committees which already exist
won't approve the use of private and personal information, and we
stand by that principle. You could be right and the researchers
could be right, but I think they have to make a better case than
they have.
Ms Lankin:
In the case of health systems management and the objection that
you put forward, I think no one, when they use those words, is
really talking about the fraud investigations and OHIP billings,
or whatever; they're talking more systems management questions.
For example, the cardiac care registry was established in Ontario
because we had long waiting lists for heart surgeries and we
wanted to better monitor and see what had happened, what the
outcomes were, and make sure we had the resources in the right
place, and as a result of that, we were able to bring down the
waiting time for cardiac surgery. For someone who is prone to
having a heart attack or may be having one, having access to that
preventive surgery in advance is a really important thing. Is
that a circumstance in which we can see that it is reasonable for
the ministry, for management purposes, to have a group access
personal and identifiable information?
Mr
Gleberzon: Why couldn't they have that along with
informed consent? If the patient has been registered, all you're
talking about is another piece of paper for the patient to say,
"Sure, I agree to this," and the principle is intact. As someone
said before, you've got your balancing act where you balance the
needs of the patient with the needs of the system. In the OHIP
system, as we said, the right for OHIP to check records already
exists.
Ms Lankin:
Right.
Mr
Gleberzon: This isn't done in order to second-guess the
doctor entirely. If the doctor is proven to be fraudulent, that's
another matter.
Ms Lankin:
I think I'm still looking for that example that answers your
question, "Why couldn't it be done through a consent?" Perhaps we
got one partial answer from Cancer Care Ontario yesterday when
they indicated that if anyone goes to one of their regional
cancer centres, or Princess Margaret, that's part of that
network, it's very easy. They control the issue of consent.
They're hooked into that system. But you could be diagnosed with
cancer through an outlying hospital or through a pathology
report, through tests in your doctor's office, and unless there's
a way for them to pick up and bring that person on to the
network, they have to rely on the individual physicians to ask
for consent to put that person on the network. People fall
through the systems. Our information in terms of what kind of
resources we need to be able to treat people is also lacking.
Does that warrant worries about consent?
1050
Mr
Gleberzon: If you followed that example, how would you
know about the patient? The doctor would forward that
information, so that would mean the doctor should also forward
the consent. You're talking about a principle here.
Ms Lankin:
Yes.
Mr
Gleberzon: The issue is that no one can deny the need
for the procedure immediately and as quickly as possible, there's
no doubt about that, but we're talking about retaining the
principle of privacy as well as ensuring that the system, which
today, with modern technology, can be done very easily, is
filling the immediate need as it arises.
Mr Wood: Would you be prepared
to support a provincial act that was substantially similar to the
federal act?
Mr
Gleberzon: I have to admit we're just beginning to go
through the federal act, so I can't answer that question right
now. You can ask me in about a week's time and I can probably
give you an answer on that.
Mr Wood:
If you have a moment, please write the Minister of Health and
tell him what your thoughts are on that.
Mr
Gleberzon: Sure, I'd be happy to do that.
Mr Wood:
I'd like to come back to the question of research for a moment.
What we've heard is that there are certain kinds of research that
effectively cannot be done if consent is required. They involve a
very small sample of people who can't be found and so on. If you
were satisfied that that position was right, and if there was
proper oversight, would you be prepared to allow research in
those circumstances, or would you be prepared to say the research
should not be done?
Mr
Gleberzon: I think the answer is that we'd have to see
what the case is. I mean, we're talking about hypothetical-
Mr Wood:
I've given you the case. If the alternative is we either allow it
under proper supervision or the research isn't done, which side
of that would you come down on?
Mr
Gleberzon: You were saying that-
Mr Wood:
I'm putting a tough question here, I know.
Mr
Gleberzon: You are and that's fine; that's the way it
should be. What I'm trying to envision is the type of research
you're talking about where you have a very small sample of
people. Are we talking about a case of some kind of potential
epidemic and the people are unknown, or if we have an emergency
situation?
Mr Wood:
No, I wasn't really thinking about an emergency situation. I was
thinking of a situation where you have, say, a fairly rare form
of cancer so you have a very small sample and it's not practical
to get consent. The issue is, do we insist upon consent and not
do the research or, under proper supervision, do we do the
research without consent?
Mr
Gleberzon: I have to admit that's something I can't
answer off the top of my head and I wouldn't want to, because
it's part of this balancing act that has to be retained. The easy
answer is, sure, go ahead and do the research because of the
long-term benefits, but what are we going to be sacrificing on
the other side? That may seem like an overly purist point of
view, I admit that, but I think that's the kind of very pointed
and clear thinking that has to go in before these kinds of
decisions are made.
Mr Wood: I
think you've framed the question very well. We invite you to give
it some thought and pass your answer along to the Minister of
Health.
Mr
Gleberzon: Sure.
Mrs
McLeod: Just before we leave this issue of informed
consent, you mentioned registration. Are you advocating that
patients could be asked whether they would want to sign a consent
form for the sharing of their health information but on very
clear and restricted terms that it would be with other health
care providers, for example?
Mr
Gleberzon: Sure.
Mrs
McLeod: And have that as a matter of a patient's record
so it's not a matter of contacting the individual?
Mr
Gleberzon: If the patient owns the information-we would
begin from that principle-then they have the right to determine
who has access to it.
Mrs
McLeod: So it's sort of a variation on a lockbox?
Mr
Gleberzon: Yes.
Mrs
McLeod: I wanted to ask you about the insurance issue.
You've been very clear and very strong about the fact that any
sharing of health care information, without consent-I assume
that's the underlying premise there-should only be with health
care providers, not with the Ministry of Health and not with
insurers. The issues we hear, and that I suspect you do at CARP,
are from private insurers who ask for consent, and their weapon
is that if you don't give them consent to get your health
records, you're not going to get the insurance anyway. So people
feel as though it's not really consent that they're being given.
First of all, is that a problem? Are you running into a lot of
people who are being denied insurance because of access to health
records? Is it fair, and are there ways we should be trying to
deal with it, quite apart from the issue of sharing information
without consent?
Mr
Gleberzon: I have to say we have not gotten a lot of
complaints about the particular issue of being forced to give
consent. I think what you're touching on is a reality of life,
and that leads to the larger issue of protection around informed
consent. I suppose that in realistic terms, even though there may
be all the protection in the world, pressure can still be brought
to bear in many ways, and people buckle under and are afraid to
complain because of the consequences. I'm not sure how you deal
with that kind of issue when you're dealing with whatever the law
says and whatever practice is being done. It's just one of those
issues that might even defy any kind of legislation. The
individual has to decide what kind of consequences they're
prepared to take.
Mrs
McLeod: Suppose our legislation had a lockbox, so that
the individual denies consent to release at least some aspects of
that health record. Now we get to the private sector, which is
outside of that. They seek consent and get it, because otherwise
you're not going to get the insurance. Should they have access to
what an individual has put in their lockbox? Is that something
the private sector has as a right to, or is their power to deny
insurance just so powerful that they can basically get anything
they want?
Mr
Gleberzon: As I understand the way the system works now,
they would go through the doctor or the health care professional
to get confirmation of whatever the claim is. Why should that be
changed?
Mrs
McLeod: I was thinking of not so much the claim as
actually applying to get insurance and whether they're being
denied.
Mr Gleberzon: That's part of a
larger issue too. In fact, I was talking to one of my colleagues
today-he's retired-and he was telling me that one of the
conditions of his work was that as senior management he had to
get an annual medical checkup. He heard of cases of other people
who found ways to kind of avoid that from happening for various
reasons. That's informed consent, isn't it? But it's also a
condition of employment.
Mrs
McLeod: Exactly.
Mr
Gleberzon: Those are the kinds of issues this bill
should be grappling with. But how you grapple with them, I have
to admit, is a very thorny question. When pressure is brought to
bear and it affects your livelihood and those other issues, how
do you deal with that in a realistic manner?
Mrs
McLeod: Are there some things the private sector should
not have the right to, nor the right to deny access to a
certain-
Mr
Gleberzon: In theory, yes, but how do you prevent that
from happening?
Mrs
McLeod: I agree.
The Chair:
Thank you very much for coming before us today.
COLLEGE OF PHYSIOTHERAPISTS OF ONTARIO
The Chair:
Our next presentation will be from the College of
Physiotherapists of Ontario. Good morning and welcome to the
committee.
Ms Jackie Schleifer
Taylor: Good morning. My name is Jackie Schleifer
Taylor, and I'm the president of the council of the College of
Physiotherapists of Ontario. I have accompanying me Rod Hamilton,
who is our director of policy and communications, and Richard
Steinecke, who is our legal council.
I want to thank you for
hearing us on this matter. In this brief presentation I will just
outline who we are as a college, what our mandate is and the
purpose of our visit here today, and highlight three areas of key
concern that we would care to bring to your attention.
First, the College of
Physiotherapists of Ontario is not an educational organization.
It is a regulatory body created under Ontario's Regulated Heath
Professions Act. Our primary role is to serve the public interest
by carrying out the duties that the RHPA requires of us. These
include registering physiotherapists for practice in Ontario,
regulating physiotherapy practice by establishing professional
conduct standards and investigating allegations of professional
misconduct against members, and establishing quality-of-care
programs to improve physiotherapy practice in Ontario.
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The college collects and
uses health information for two purposes. It does so for
investigations and as evidence in proceedings against
physiotherapists who are alleged to have acted improperly. We
also use health information to develop and maintain the programs
that are required under the RHPA for the purposes of improving
the quality of physiotherapy care in Ontario.
A key part of understanding
the college's role is to realize that it does not use the patient
health information it collects in the way that health care
providers or funders do. We do not use health information to make
or suggest treatments to patients. Instead, we use it as dictated
by our governing statute, the RHPA.
In order to accomplish
these statutory obligations, the RHPA gives the college the
authority of a tribunal. As such, the college is empowered to
investigate members and, where necessary, hold disciplinary
hearings at which findings are made and penalties can be
assessed. The investigation process requires the college to
collect many types of evidence, including patient health
information. Without the ability to use health information for
this purpose, the college would not be able to determine whether
physiotherapists who are alleged to have acted improperly have
actually done so.
The RHPA also requires the
college to develop quality assurance programs to improve the
quality of physiotherapy practice. The program developed under
this statutory obligation also uses patient health information to
assess and improve the quality of physiotherapy care. Without the
ability to use this health information for this purpose, the
college would also not be able to provide the quality-improvement
programs that are required by law.
The RHPA recognizes the
sensitivity of patient health information as well as the
college's need to use it in investigations and
quality-improvement programs. The law contains strong protections
to ensure that patient health information is not misused and that
patient confidentiality is maintained.
The college has come before
the standing committee on general government for two purposes.
First, we're here to provide support for the general intent of
the Personal Health Information Privacy Act. The college believes
that clear rules are needed to govern the collection, use,
retention, disclosure and disposition of personal health
information. Consistency and clarity in the obligations of health
information custodians in all these circumstances will serve the
public of Ontario well. PHIPA will accomplish its purpose if it
provides both the public and the agencies charged with protecting
the public interest with the appropriate access provisions and
confidentiality protections for health information.
The college is also here to
note some potential problems with the act that may limit its
potential to benefit the Ontario public. The college's concerns
relate to seven key areas, which are outlined in our written
submission. Of those, I will highlight three areas. They relate
to the college's role as a health information custodian,
legislative priority and the application of the PHIPA
legislation.
With respect to the
college's role as a health information custodian, the college
understands the need for broad application of the Personal Health
Information and Privacy Act and, on that basis, the need to
designate the college as a health information custodian. However,
it is very important
that government recognize the statutory obligations that are
placed upon the college and how these require us to use and
protect health information in ways that are tailored to our
public protection role. This concern is based upon two main
considerations.
First, appropriate access
and use protections for personal health information already exist
in the Regulated Health Professions Act, RHPA. However, many of
the confidentiality and use provisions in PHIPA are given
priority over RHPA. We are concerned that unless the RHPA's use
and confidentiality provisions have priority over the Personal
Health Information Privacy Act, our ability to act in the public
interest will be diminished. The statutory obligation that we
have to regulate their members in the public interest requires
that access and use of patient health information be governed by
statutory provisions specifically devised for this purpose.
Second, we suggest that
questions as to the appropriate application of PHIPA's provisions
regarding use and access of patient health information have
already been considered and decided upon. It is a clear policy
decision by those who have developed PHIPA that special
provisions should exist to ensure that for most agencies health
information that is used in proceedings and for quality-of-care
purposes is excluded from the access and use provisions of the
act. However, this decision is not consistently applied to the
college.
We have already indicated
that our use of patient health information is as evidence in
proceedings or for quality-improvement purposes. We also note
that the college's use is already governed by the Regulated
Health Professions Act. With this in mind, we believe it would be
inconsistent for the access and use provisions in PHIPA to be
applied to college activities. However, we note that while the
college is exempted from some of the duties respecting access and
use, some custodial obligations will still fall upon the college.
To remedy this problem, the college suggests that upon
proclamation, the existing regulation-making authority in PHIPA
be used to ensure that PHIPA's obligations for health information
custodians do not apply to the college in the performance of its
statutory duties under RHPA.
Although the issue of
legislative priority is somewhat illustrated by this first point,
I would like to further expand on the second area of concern,
legislative priority. The college believes that government has
taken an important step in supporting the public protection role
of regulatory agencies by recognizing that, in some cases,
existing confidentiality protections in other legislation should
have priority over PHIPA. It is clear that certain sections of
the RHPA are given clear priority in this fashion. There are,
however, other sections of the RHPA that the college uses, and
these have not been given clear priority.
We would like to stress the
point that the college's sole purpose for the collection of
personal health information is to protect the public interest by
regulating physiotherapists. We wish to remind the committee that
the RHPA is intended to serve the very specific task of allowing
us to regulate our members in the public interest. The RHPA's
confidentiality provisions were specifically developed for this
purpose. For the college to maintain its regulatory authority
without challenges, the priority of the RHPA must remain
clear.
If PHIPA imposes
confidentiality protections on the college that are different
from those currently existing in the RHPA, we believe it will
impair our statutory duty to regulate health professions in the
public interest. We suggest that paragraph 3 of subsection 11(2)
of PHIPA be broadened to ensure that whenever there is a conflict
between the RHPA and the Personal Health Information Privacy Act,
then the RHPA provision takes precedence.
The third and final point
relates to the application of the legislation. The college would
like to express once again its approval of PHIPA's broad,
underlying principle that access to and use of personal health
information should be governed by statute. However, the college
is concerned that in practice PHIPA does not completely fulfill
this expectation. The college noted that commercial enterprises
that collect and use substantial amounts of personal health
information are not included within the definition of health
information custodians, nor are such commercial enterprises
governed by other statutes that clearly dictate the appropriate
use of personal health information.
For example, in its role of
protecting the public interest, the college has seen numerous
circumstances where commercial organizations such as insurance
companies collect and use personal health information. It is
clear that such companies make legitimate use of this information
for purposes such as assessing claims and researching actuarial
trends. However, it is also clear that many patients are not
aware of how information is obtained and used by these companies
and are not able to access their information for the purposes of
correcting errors or reviewing their health status. This lack of
informed consent to the use of their health information and their
inability to access it causes patients great concern and should
be addressed using PHIPA's general principles.
If the health information
that commercial agencies use was subject to the same protections
with respect to use and access that PHIPA requires of other users
of health information, patient concerns over the inappropriate
use of their personal health information would be much
diminished. So the college believes that the definition of
"health information custodian" in section 2 of PHIPA should be
expanded to include a specific clause that would capture those
operations of commercial agencies that collect and use personal
health information.
In summary, the College of
Physiotherapists of Ontario firmly believes that if government
wishes to maintain the role of the college in regulating
physiotherapists in the public interest, our concerns about
PHIPA's imposition of custodial duties on colleges and the
questions about the priority of legislation should receive
serious consideration.
I would like to close by expressing the
college's sincere thanks for the opportunity to address the
standing committee and have our concerns about PHIPA placed under
consideration.
1110
The Chair:
Thank you very much. That gives us about two minutes per caucus
for questioning. We will start with the government.
Mr Wood:
Do you have the power of subpoena?
Mr Richard
Steinecke: Yes. Investigators do have the power to
summons.
Mr Wood:
In that case, I don't understand the problem with the application
of PHIPA to you, over and above the RHPA.
Mr
Steinecke: First of all, the college can only use the
summons if it has initiated an investigation with reasonable and
probable grounds. It has to know about the information first.
Much of the college's finding out about the problem only occurs,
for instance, after a mandatory report where a complaint has been
made. So if the patient isn't aware, often this information comes
to the attention of the college through colleagues and co-workers
or employers. If they don't have the power to make a mandatory
report, if they have some concerns that it may only be voluntary,
then the college won't find out about this information and people
will continue to practice without being investigated.
Mr Wood:
If you received information that was credible, would that not
give you grounds for a subpoena?
Mr
Steinecke: Yes. But, first of all, can we get the
information?
Mr Wood:
If you've received information from co-workers-
Mr
Steinecke: They won't necessarily be able to give it to
us under PHIPA. Under PHIPA, first of all, it's optional whether
they will give it to us. They may decide not to. They may decide
it's in their best interests to let the person move on quietly
somewhere else, to cause problems somewhere else without telling
us, because then they can avoid a lawsuit.
Mr Wood:
What I'm not grasping is how the application of PHIPA to what you
do would prevent your doing what you do. If you have the power of
subpoena, you can get the information without the consent of the
patient.
Mr
Steinecke: Only if we know about it first.
Mr Wood:
You've got to have grounds for the subpoena, obviously.
Mr
Steinecke: Yes.
Mr Wood:
Surely you wouldn't seek information without grounds.
Mr
Steinecke: Of course, but people won't bring it to the
attention of the college because they will believe that PHIPA is
a barrier, or they may decide they don't want to give information
to the college, whereas now they have to tell us, because PHIPA
overrides the duty to tell us about problems in confidence-sexual
abuse, those kinds of things. We won't find out about it because
they'll say, "PHIPA gives us a choice. We don't have to tell the
college," or "We don't want to tell the college."
Mr Wood: I
don't want to get into a lot of technical discussion today,
because obviously time does not permit it. But I would be
interested in your giving us a memo explaining why you think the
duty to report is overridden by PHIPA. That would be an important
item that would be helpful to us.
Mrs
McLeod: We have had a lot of representation from the
regulating colleges in terms of whether they should be excluded
altogether or whether there should be some amendments to the act
to deal with their ability to carry out their regulatory
functions, so I'm not going to spend time questioning you about
that.
I want to deal with the
last section of your presentation, application of the
legislation. First of all, it would be absolutely clear under
this bill, even as it's drafted now, that physiotherapists who
are practising in private clinics, which the majority are, would
be covered as health care custodians and would be bound by all
the conditions around protection of privacy information.
Have you been involved in
the government's consultations on parallel privacy legislation
affecting the private sector and, if so, have you made any
representations?
Ms Schleifer
Taylor: No.
Mrs
McLeod: That's not something you've been involved with
as a college. You spend quite a bit of time with your concern
about the private sector institutions that do collect health
information which aren't under Bill 159.
When it comes to the
insurance companies, you talk about the lack of informed consent
because people don't know how that information will be used. We
do hear stories of things you would clearly like to prevent, both
in terms of access to health information which perhaps not even
insurance companies should have, and secondly, access to
information with consent because the person has no alternative
but to give consent if they want the service or the employment,
and the selling of lists, once they get them, the selling of that
kind of information.
Do you hear those kinds of
stories? I'm wondering what underlies the emphasis you've put on
this section of your presentation.
Mr Rod
Hamilton: Our concerns are more generally around
people's concerns that the information that the companies may
have is not necessarily accurate and may not reflect their true
health status. So it's concern around not only access but also
ensuring that the information is accurate and having access to
the ability to make corrections where necessary to that type of
information.
Mrs
McLeod: Are you suggesting that for there to be truly
informed consent, there almost has to be a provision that the
individual has seen the health record prior to it being released
to a private company?
Mr
Hamilton: I'm sorry, I don't quite understand your
question.
Mrs
McLeod: I'm wondering how you would provide for that
kind of informed consent. The individual that signs that consent
doesn't necessarily know what information is going to be provided. How do you make
sure the consent is informed?
Mr
Hamilton: I think that you have laid out the principles
of consent fairly clearly in the act. If those are complied with,
then I shouldn't think there would be a lot of difficulty. The
important thing is making sure that those do apply to all
instances where health information is transferred.
Ms Lankin:
I want to follow up on Mr Wood's request for you to submit in
writing something about the way in which you see this legislation
overriding mandatory reporting. I've been having trouble
understanding that as well, so I would appreciate that.
Let me ask you just one
question on that subject, though. In section 29, which governs
the disclosure of information, is it the overriding language that
says a health information custodian "may" disclose? Is it the
word "may" that concerns you, in that somehow the difference
between "may disclose" in this legislation and "shall report" in
your legislation-there's the conflict?
Mr
Steinecke: Yes.
Ms Lankin:
OK. We need to sort through that, but if that's a real issue,
it's also an issue for child welfare legislation, reporting of
abused children and things like that as well.
Mr
Steinecke: Yes, but if you go back to section 11, which
is the override provision, there is specific exemption for child
and family services reports.
Ms Lankin:
Maybe that's the answer, as opposed to a general exemption from
the legislation.
I'm actually interested
with respect to the definition of health information custodian.
All of the other colleges in the federation have said, "Exempt us
completely." You take a slightly different tack, in which you
say, "In regulation, exempt us for those uses of the information
that are statutorily set out, mandated for our organization."
That's interesting. Could you, when you're putting together your
information, look through the legislation and tell us what the
difference would be? For what purposes or in what circumstances
would you be a health information custodian and subject to this
legislation, and then for what purposes would you not? That would
be useful.
I'm also concerned about
any approach that would simply give the RHPA primacy over this
legislation where there are conflicts. Again, I would like to
know the specific areas. It's sort of what we've already talked
about, but if there are more, the specific areas where you think
there are conflicts and where, if the committee were to address
it, we could have the option of addressing it by specific mention
in that section of the legislation.
My goal would be that
anyone who reads the privacy legislation is going to know what
their rights are and know when another act overrides it in what
section, instead of having to go to four or five different pieces
of legislation and work it out themselves. So if you could give
us those examples of where the override is necessary, that would
be helpful.
Mr
Steinecke: Sure.
The Chair:
Thank you very much for coming before us this morning.
1120
CANADIAN INSTITUTE FOR HEALTH INFORMATION
The Chair:
Our final presentation of the morning will be from the Canadian
Institute for Health Information. Good morning. Welcome to the
committee.
Mr Richard
Alvarez: Good morning. As the chief executive officer of
the Canadian Institute for Health Information, or CIHI, which is
a national organization located here in Ontario, I want to start
by thanking the committee for the opportunity to appear before
you today. I should add, we're very much in support of Bill
159.
Before we actually make our
comments about the bill, perhaps you would permit me to say a few
words about CIHI so that you can see why this bill and this issue
of privacy is very important to us.
The institute itself was
incorporated in December 1993 as a federally chartered,
independent, not-for-profit organization, and was agreed to and
incorporated by the federal and provincial ministers of health.
It was set up with a mandate to do two things: to serve as a
national mechanism to coordinate the development and maintenance
of an integrated approach for Canada's health information system.
By that we've taken the whole aspect as a mechanism of making
sure that there are standards, whether they be data standards,
financial and statistical standards, that sort of thing, because
as you do efficiency analysis or effectiveness analysis, you want
to make sure that you're comparing apples with apples.
The second aspect is a lot
more straightforward. We are to provide and coordinate the
provision of accurate and timely information, to establish a
sound health policy, to improve the management of the health care
system and to generate public awareness about factors that affect
health.
Under the mandate, the
institute conducts analyses of health data and issues health
information and reports-we issued one last year, a very major
annual report-that serve, we believe, the public interest. For
example, we collect information from hospitals on patients being
discharged. That information typically uses coded summaries of
hospital stay information to report on causes of hospitalization,
procedures done and length of stay.
You should note that our
analysis of this data and application and then the application of
cost data really form the basis of funding and the efficiency of
hospitals here in Ontario.
The Canadian Organ
Replacement Register tracks trends in renal dialysis and organ
transplantation, including patient survival rates. A further
example would be the Ontario Trauma Registry, which produces
statistics on the causes of hospitalization for trauma which are
used for planning trauma services and for developing injury
prevention programs.
In conducting our work, let me assure the
committee that we take the whole issue of privacy very seriously.
At the outset we realized that our analysis, information and
standards programs would only be successful if we had strong
measures to protect the confidentiality and security of the
personal health information that we hold. Notwithstanding the
fact that CIHI was formed in 1993, it was really formed from two
or three predecessor organizations that in fact had been in
business for the last 15 years before we came into existence.
Those predecessor organizations also had a strong culture of
privacy protection. Over the last 20 years, as far as we can
tell, there have been absolutely no confidentiality breaches.
In 1993 we put in place
privacy principles based on the CSA model code to guide and
govern our operations. Through agreements with provincial and
territorial ministries of health, we also commit to abide by the
relevant health and privacy legislation in the respective
jurisdictions. Within this rather complex national framework, we
have successfully self-regulated our health information
practices.
Turning to our comments on
Bill 159, while I have sat here this morning and understand the
matters of concern being raised by other groups, I must tell the
committee that CIHI is very encouraged by plans to put in place a
health information privacy act here in Ontario. We believe this
is a positive move and will set out a foundation for legislated
authorities and clear rules for the protection of health
information, which really don't exist today.
For us, Bill 159 will
ensure that CIHI's activities are visibly subject to legislated
rules, either as a custodian or in the service of a custodian.
Having a clear framework of rules for the collection, use and
disclosure of health information will be helpful for all who are
entrusted with this sensitive information.
Frankly, CIHI looks forward
to being identified as a custodian under the bill or through
designation in the regulations as a person who maintains a
repository for personal health information for data analysis and
research. This would make us clearly subject to the oversight
provisions of the law.
You should know that as a
national organization, obviously we collect data from provinces
and territories. At this time we have agreements with most
ministries to abide by the legislation in their respective
jurisdictions. Obviously, for example, Alberta data is subject to
Alberta laws. While it might seem obvious in Bill 159, for
clarity we would suggest that it applies only to health
information about health services provided here in Ontario, so as
not to be confused with the other data that we hold.
Bill 159 adopts the
principles of only collecting the information necessary for the
purposes intended and of limiting access to such information.
Again, CIHI supports and already abides by such principles.
We strongly support and
encourage the principles of notification and consent. Bill 159
also supports these principles, while recognizing that there are
specific situations where consent is in fact not practical. It's
important to recognize that, as secondary users of health
information, CIHI has no direct contact with individuals and thus
cannot obtain consent. In such situations notification is very
appropriate.
As it stands, we know that
the bill would authorize health information custodians in Ontario
to disclose health information to secondary custodians for
specified purposes. This will assist us in our mandate to support
health systems management, planning and evaluation and to serve
the public within a legislatively prescribed framework.
Bill 159 prescribes rules
for research that must be adhered to by researchers requesting
information from us. Currently, we have very strict rules
regarding access to data from researchers.
We certainly welcome the
clarity in the bill in those situations where CIHI provides
information management services by way of an agreement. Bill 159
prescribes the content of the agreements related to disclosure
and use of information without the individual's consent, as well
as the security of the information.
As far as we can tell, the
bill's provisions will increase transparency about our role in
the health system. The public will be better informed about
anticipated disclosures to CIHI and how to obtain more
information about CIHI's information policies.
Finally, we welcome the
designation of the Ontario Information and Privacy Commissioner's
office as the experienced entity to perform the oversight
function with respect to personal health information.
In closing, we realize
there are many viewpoints on how health information should be
protected. We believe Bill 159 provides a reasonable foundation
for handling health information in Ontario. We see it as
positive. We also expect that after this process the committee
and the Legislature will refine the bill in light of both what
they've heard and privacy considerations that we need for an
effective and efficient health care system in this province. If
the bill does not proceed, we will continue to self-regulate and
to abide by applicable legislation.
Thank you for this
opportunity. I have with me two colleagues, Joan Roch and Ed
Chown, who work in the privacy secretariat which reports directly
to me. We are available, obviously, to answer your questions.
The Chair:
That leaves us three minutes for each caucus. This time we'll
start with Mrs McLeod.
Mrs
McLeod: You would obviously anticipate being named under
the regulations, under section 213, as a health care custodian
for the purposes of collecting data for research. Is there any
advantage to being specifically named in the legislation as a
health care custodian?
Mr
Alvarez: What we're striving for is a lot more clarity
and transparency in the whole aspect of privacy. Given the kind
of job that we do, being named makes it very clear in terms of
why we're being named and what our purpose is to the public and
to all those we deal with.
Mrs
McLeod: If Ontario legislation should not go ahead, you
indicated you would then, of course, have to abide by existing legislation.
One of the things you would have to abide by is the federal
legislation, which does contain a form of lockbox. I'm wondering
whether you see that as limiting your ability to do the kind of
research and data analysis that you're now doing. You are
starting to have some experience with three provinces that do
have some form of a lockbox. Is that causing any problems or
presenting any limitations for your work?
Mr
Alvarez: Two questions, and the first question is Bill
C-6. As we understand it, Bill C-6 applies to organizations
engaged in commercial activities. We are not engaged in
commercial activities.
Mrs
McLeod: So you would be exempt under C-6.
Mr
Alvarez: Having said that, we will abide by Bill C-6.
The only one that gives us real problems is the aspect of patient
consent, given that we are in the secondary data collection
business. In terms of the lockbox, again, if that becomes
pervasive, we will start to see fragmentation of the data, which
will affect the integrity of the data and the quality of the
studies that we do. That's a real concern with the lockbox,
having understood quite clearly that an individual does have the
right to say what should be in there and what shouldn't.
Mrs
McLeod: Do you require names or can you work with health
numbers and do the same analysis?
1130
Mr
Alvarez: We have 14 national databases. Of the 14
national databases, generally, 13 of the 14 national databases
contain such things as date of birth, postal code, gender and
personal health number. None of them contains name or address.
The only one that contains name and address is the organ
replacement registry and the reason for that is that as we track
individuals who have had transplants and they move from one
province to the next, it's useful to have their names to
basically follow them through, because by that stage their health
care insurance number is not valid any more.
Mrs
McLeod: But even without names you can't access that
information if it's in a lockbox under the legislation currently
in place in those three provinces?
Mr
Alvarez: Correct.
Ms Lankin:
Why in the organ transplant registry do you need to track the
individual? What's the end information that you're looking
for?
Mr
Alvarez: Survival data. We're looking at the
effectiveness of our procedures. We're looking to see basically
kidney survival rates and some of the other organs, whether in
fact they're improving, whether they're going down etc. That's
basically the reason.
Ms Lankin:
That's really valuable information. Why in that circumstance
wouldn't we be able to ask the patient who has undergone the
transplant if they would be willing to be part of the registry to
be tracked for the kind of investigative work that's done?
Mr
Alvarez: This is something that's historical. This
database has been going on for quite a while. We've just done a
complete review of all our policies and procedures and in fact
are going back to our board and saying that's exactly what we
should be doing, is consent.
We have got some of the
specialists who are very concerned, given the few numbers that
are done, that in fact patients don't agree with this and then
that would lessen the value, if you like, of the research. As far
as CIHI is concerned, we strongly believe that in those cases we
do need consent. A good example would be that we're just in the
process of developing a hip and knee joint replacement registry,
again looking at the effectiveness of hips and knees and how long
the first procedure lasts before the next one is put in. There,
very strongly, we have a patient consent form that we will
require prior to adding that to our data.
Ms Lankin:
I got my new knee last September and I would be delighted to sign
a consent form so you can add me to the registry.
I wanted to ask you a
question about the interjurisdictional issue. That's interesting;
we haven't heard that before. You suggest that Bill 159 should
apply only to health information about health services provided
in Ontario. Of course, the privacy of the information is about
the information of the person, who may go from jurisdiction to
jurisdiction. A patient chart may contain medical history of
services that were provided in Alberta or BC and the person now
lives in Ontario. It would be very hard for us to say to a
practitioner that the rules only apply to those services that
have been provided in Ontario, when it's the confidentiality of
the patient's information. Could you rationalize those two?
Mr
Alvarez: It's a tough one. What we are starting to see
is very similar legislation starting to be developed across the
country, as it relates in a lot of cases to Bill C-6. So while
Ontario is probably the second or third province out, there are
other legislation moves on the way to have a similar sort of
legislation. We just don't see from a practical point of view how
this legislation could, from a legal point of view, be valid
outside Ontario. Having said that, we are encouraged to see that
similar legislation is being developed across the country.
Ms Lankin:
But surely this legislation governs the information of individual
citizens in Ontario. It's a citizen's health information that's
being protected by this legislation; it's not the health system's
provision of services. The legislation would be dependent on
where the person is resident, not where the procedure was done, I
would think.
Mr
Alvarez: That's right.
Ms Lankin:
One last question then. You have indicated that right now in
terms of your databases the organ transplant is the only one
where you have names and you're looking at going to
consent-based, like you will with the new hip and knee registry.
That means there won't be any circumstances in which you're
gathering information right now that requires names. I've been
asking this question over and over for research, because I
believe the work that you do, and ICES and others, is very
important. Can you tell us of any examples of secondary use of
this information that requires a name? Can you imagine a
situation, a clear example, so the committee can understand why an exemption to
consent-
Mr
Alvarez: Other than the ones that I've told you about,
where we're trying to track an individual who has moved from one
province to the next and we lose track of the health care
insurance number and we're trying to track the effectiveness of a
particular procedure-
Ms Lankin:
But you already said that could be done with consent, right?
That's all I'm saying.
Mr
Alvarez: Right. We do not see, without consent, with
those sort of circumstances why we would need names.
Mr Wood:
Would you agree that a lot of the medical research can be done
with the consent of the patient, that you don't have to get data
without their consent to do that research?
Mr
Alvarez: I think the issue for the health system, given
the pressures on them, is getting truly informed consent for
secondary uses and research. That's a really tough one. If we're
going to very specific aspects of names, then we really should
try to get consent on those aspects.
Mr Wood: I
was asking a slightly different question. There's a lot of
research you can do where you can get a representative sample by
getting the consent of the people whose data are being used. Is
that not correct?
Mr
Alvarez: There are two questions here again: one is
getting the consent and the other is representative samples. We
would have a problem with just representative samples with some
of the work that we do.
Mr Wood: I
gather, in essence, because you can't get a big enough
sample.
Mr
Alvarez: In a lot of cases we can't get a big enough
sample; in other cases, when there are low-volume, high-cost
procedures and this forms the basis of a major efficiency look at
the health system and funding formulas, that could be really
problematic, if you don't get your sample right or you exclude
those particular cases.
Mr Wood:
Would you agree with the proposition that information shouldn't
be provided without consent where research can be done by getting
consent?
Mr
Alvarez: Yes, I do.
Mr Wood:
Do you have a problem with the Information and Privacy
Commissioner ultimately signing off on the ethics reviews?
Mr
Alvarez: My only problem would be from an operational
point of view. That would be my only problem. Right now, we do on
occasion go to the privacy commissioner's office and seek her
advice, but given the volume that's likely to come through, that
could be problematic.
Mr Wood:
There was one thing I didn't quite understand. You said you
believed in notification rather than consent. If you can notify,
why can't you get consent?
Mr
Alvarez: I suppose the subtle difference for us is
actually getting a patient to write a consent as opposed to
notifying a patient of how their data is going to be used and how
the data is going to flow, notwithstanding the fact that the data
doesn't have names and addresses on it-so a sign that is posted,
a form the patient sees, to say, "Your data will be sent to CIHI
for these purposes."
Mr Wood:
Suppose they don't want it sent.
Mr
Alvarez: That's always a risk and problematic, because
again it starts to fragment the database and stops some of the
work that we do.
Mr Wood:
Do you feel that I should be compelled to give my information to
you? By the way, I might say that I would give it to you, but
suppose I don't, for whatever reason. Do you feel I should be
compelled to give data to you for research purposes?
Mr
Alvarez: No, I don't think you should be compelled to
give it to me.
Mr Wood:
But you would agree there may be certain limited exceptions where
we have to compel you, if we can't do the research. You would
come down on the side of doing the research rather than not, if
we have to do it by compelling people.
Mr
Alvarez: In the business I am in, absolutely. Obviously
there is a balance between an individual's right to privacy and
the public good. We believe very much that the kind of business
we are in and why we were set up by the Ministry of Health is an
aspect of the public good. So that balance has to be found.
Mr Wood:
But your principle, as I think I've heard it, is that you want to
get consent where that's possible.
Mr
Alvarez: Absolutely.
Mr Wood:
Those are my questions.
The Chair:
Thank you for taking the time to come before us this morning and
making your presentation.
With that, unless there are
any questions, the committee stands in recess until 1
o'clock.
The committee recessed
from 1139 to 1300.
The Chair:
We'll call the committee to order and continue our hearings on
Bill 159.
COLLEGE OF DENTAL HYGIENISTS OF ONTARIO
The Chair:
First up this afternoon is the College of Dental Hygienists. Good
afternoon and welcome to the committee. Please proceed.
Ms Fran
Richardson: Thank you very much, Mr Chair and members of
the standing committee. My name is Fran Richardson and I'm the
registrar for the College of Dental Hygienists of Ontario. With
me is our legal counsel, Richard Steinecke, who will answer legal
questions. I believe you've already met Mr Steinecke.
The college is pleased to
have this opportunity to present before the standing committee on
this very important piece of proposed legislation. Our college is
one of the ones that was newly formed under the Regulated Health
Professions Act and it regulates the 6,500 dental hygienists who
practise in Ontario.
While we often think of
dental hygienists as only working in dental offices, an
increasing number of dental hygienists are now working in
alternative areas or setting up their own practices. In
particular, dental hygienists are treating underserviced segments of the
population such as children, shut-ins, long-term-care residents,
new Canadians and the homeless. In fact right now we have dental
hygienists in Niagara who have a bus that goes out to the
homeless, finds the homeless and treats them for their preventive
care and gives them vouchers so they can get dental treatment. We
also have a project that is being sponsored by our college in
Windsor for the homeless, to get them into the academic teaching
college there. So we've been working in that area.
The dental hygiene
profession is a primary-care profession that sees patients
directly. Consequently, it has its own standards of practice, its
own code of ethics and independent professional obligations to
its clients in the public interest.
Our college supports and
affirms the position submitted by the Federation of Health
Regulatory Colleges of Ontario that was presented to you
yesterday. We're one of the signatories on that.
Our college understands the
need for the enactment of privacy legislation and commends the
Ontario government for championing patient rights. Dental
hygienists are charged with the responsibility of creating
original documentation and housing patient records. This may
occur in either the public or private sector. The college accepts
that the enactment of this privacy legislation will mean
rewriting our own regulations, an activity that the college is
very well prepared to do; that is, our records regulations.
The College of Dental
Hygienists is providing the standing committee with a formal
written submission and wishes to highlight three important points
related to the bill.
First, the college is well
aware that the mandate of all 21 health colleges is to govern the
profession in the public interest. That public interest includes
investigating complaints of professional misconduct, incidents of
incompetence and, for us, concerns about the fitness of dental
hygienists to safely practise the profession. Patient
information, when used to carry out our mandate, is used only as
evidence by the college in these proceedings and is not used in
any other manner.
This bill, however, is
written for custodians who use personal health information to
treat patients. The bill does not always consider the special
role and circumstances in which the health colleges operate. The
college does not generate new personal health information. The
college simply collects, as evidence, information that already
exists. For example, the bill presumes that custodians will
almost always obtain personal health information directly from
the patient. Colleges, on the other hand, almost always obtain
personal health information from the patient chart, often without
the patient's knowledge. This information is used only for what
it reveals about the dental hygienist's conduct and competence,
not for what it indicates about the patient. In fact, the
identity of the patient may be concealed. Colleges just don't fit
in with the custodian approach taken in this bill. A couple of
examples are on page 3 of our written submission.
Taking all this into
account, our college is of the opinion that the regulated health
colleges should be exempt from the role of custodian. The
colleges do not use patient health information for treatment;
they use charts as evidence.
Second, the concept of
returning to an arbitrary age delineation for consent to
treatment or for the disclosure of personal health information to
a parent or guardian is baffling to our college, as it appears
that the government is reversing its own policy. When the age
restriction was eliminated in the Health Care Consent Act, the
college applauded the move. Dental hygienists are the primary
oral health professionals. They require the trust of their
clients to effect meaningful treatment. Dental hygienists who
have the trust of their clients prevent further disease that will
ultimately reduce the strain on the health care budget. This is
because our primary goal is prevention, not treatment.
A perfect example is dental
hygiene's commitment to smoking cessation. A dental hygienist is
able to tell, just by looking in the oral cavity, whether or not
a person is smoking. Young people may routinely attend the dental
hygienist for preventive assessments, fluoride treatments,
sealants and mouth guard preparations. The dental hygienist can
effectively intervene if the person has started tobacco use. But
young people are not going to be honest if they know that their
secret is going to be told to their parent or guardian. The
16-year-age delineation needs to be dropped and replaced with an
assessment of the individual's maturity and competence of the
client to decide.
Third, the Regulated Health
Professions Act, the statute that governs all 21 health colleges,
is a very complex piece of legislation. While there are several
issues related to the Regulated Health Professions Act that may
require strengthening, section 36 on confidentiality is not one
of the problems. Section 36 is clear: confidentiality must be
maintained in all cases. That section was well drafted and the
colleges need no other piece of legislation to override such an
important and salient component to their stated mandate to act in
the public interest. The college recognizes the privacy
legislation is intended to provide additional protection, but
there is a very real possibility that by overriding the Regulated
Health Professions Act, the exact opposite will occur.
For example, under the
Regulated Health Professions Act the college has the right to
inspect a dental hygienist's records to investigate whether a
complaint or report of incompetence is valid. The wording of the
bill suggests that disclosure to the college of personal health
information is voluntary, at the discretion of the dental
hygienist even. If the bill overrides the Regulated Health
Professions Act, incompetent practitioners could try to refuse to
provide access to their patients' charts. Surely that is not in
the public interest.
To review the main points:
the public will not be well served by making the regulated health
colleges custodians of client charts. These charts are not
created by the college and are used only as evidence. A
delineated age of
consent is counterproductive in health care. Competence to make a
decision is far more relevant. The confidentiality and access
provisions of the Regulated Health Professions Act should not be
compromised or weakened by the privacy bill.
The college thanks the
members of the committee for listening and respects that you have
an enormous task in front of you.
The Chair:
Thank you very much. That gives us about two and a half minutes
per caucus. This time we'll start with Ms Lankin.
1310
Ms Lankin:
On the last point you referred to, the primacy of the RHPA over
the Personal Health Information Privacy Act, a number of the
colleges have made that point. One of the questions I've been
asking is if you would take the time to go through the
legislation and give us the actual areas where you believe there
is a conflict. One of the options, of course, is not simply to
make RHPA paramount over the privacy act-I told you this before,
didn't I? I just realized that you are here again-but to make the
privacy act clear in those provisions, with the exception of the
RHPA, so that it's spelled out with clarity, all contained within
the privacy act, as opposed to simply deferring to another piece
of legislation. If you could go through and give us that kind of
detail, it is another option the committee may look at and it
would be helpful to have your input on that.
Mr Wood:
I'd like to get a clear focus on where you think PHIPA having
primacy over the RHPA would create a problem for you. I heard
that in the area of quality assurance. Are there other areas
where you think that would create a problem?
Ms
Richardson: I believe there are issues, especially in
areas of mandatory reports, as in the example that was given
previously; for instance, if we have a situation where
theoretically a dental hygienist could refuse to submit some
material because the wording is "may," and yet the college, under
the RHPA, has the right to request that material.
Mr
Steinecke: Yes. Another example would be in the area of
investigations. First of all, as I mentioned earlier, you need to
have the information to start an investigation. Secondly, even if
you issue a summons, on occasion the summons isn't good enough
because it allows the member to delay or even change the records.
It happens rarely, but on occasion you need to obtain the chart
before it has been altered, particularly in cases of dishonest
billings or something like that.
Thirdly, there is a concern
that the summons provision in the bill does not adequately deal
with the investigative summons. The definition of "proceeding" in
the bill does not clearly deal with the investigative summons. It
deals with hearing summonses and it deal with investigative
summonses in other contexts, but it doesn't deal with
investigative summonses here. That's referred to in one of the
recommendations, that it should refer to college summonses as
well. That would be in the definition of "proceeding," which is
recommendation number 5 in the paper.
Ms
Richardson: Page 10.
Mr
Steinecke: The other concern about summonses is that
under 34(5) of the bill, if a practitioner believes the release
of the information can be harmful to the patient, they can make a
statement to this effect and there has to be an independent
ruling on whether the information should be produced or not. Of
course, in our context that could stymie an investigation because
a person could say, "I don't think that this chart should be
disclosed," and it's not clear, under the bill, who does the
independent ruling. Is it the investigator who acts as a
commissioner under the Public Inquiries Act provision or is it
somebody else? So there are some drafting concerns even with
respect to the summons provision.
Mrs
McLeod: Thank you for your submission. I note that you
have also referred to the issue of parental access. You've
broadened my thinking about this whole issue because I think
there was a sense that the two provisions in the bill which would
allow somebody under the age of 16 to protect the privacy of
their records when they sought treatment or in counselling
covered the ground. You've obviously raised another issue that we
need to look at, so I appreciate your doing that.
I am wishing, Mr Chair,
there was a way that we could simply get Mr Jackson up here to
deal with this issue of the mandatory reporting aspect quickly,
because I've watched him react to this issue as if there isn't a
problem that the colleges need to be worried about with this. But
when I read the language of "may" rather than "shall," I can
certainly see where the concern is coming from.
I think we need a response
from the ministry to this issue now or at some future point. I
would certainly hope that if there is reassurance to be provided
around the mandatory reporting, that will given to all of the
colleges. That's obviously an issue of concern, as it would be to
all of us if that implication is in this legislation, because we
don't want to do anything to interfere with mandatory
reporting.
The other issue is the
primacy issue and it's more a question than a comment. I'm rather
inclined to be concerned about the privacy bill not having
primacy over other acts because of the breadth of acts where you
could be given access to health information. I just think it's
too open. Obviously with the colleges, the regulatory powers of
colleges need to be taken into consideration.
As Ms Lankin has said,
let's assume that the health privacy act, in whatever form it
emerges, has primacy over any other act, including your own. What
needs to be in this bill in order to ensure that your regulatory
powers are not interfered with? That may not be answerable this
afternoon, but I think that would be an important question for us
to have you address.
The Chair:
Thank you very much for coming before us today. We appreciate
your presentation.
Our next presenter will be
Mr Marvin Siegel. Is Mr Siegel here? OK.
We've had a cancellation;
the 1:30 slot has cancelled.
Just following up on Mrs McLeod's comments, and
not to put you on the spot without any notice, Mr Jackson, I
certainly give you the opportunity, recognizing we've got a few
minutes, if you want to take up to five minutes to address the
issue, and perhaps the folks from the college might like to stick
around long enough-if you're so inclined.
Mr Phil
Jackson: It will be a very brief answer. There is no
intent to remove the mandatory reporting requirements to colleges
as set out in the RHPA. One of the dilemmas when you're drafting
a privacy statute is to not make it an offence for that
disclosure to take place, which is why the language as drafted is
permissive in the legislation. It would permit the disclosure to
take place under another act and the legislation itself
references where there is a requirement under another act.
Obviously this is an area
where there's going to need to be more sit-downs and more work
with the colleges just to ensure that there is absolute clarity
on that. But there is certainly no intent in the drafting to
remove the mandatory reporting requirement of the colleges or
their ability to undertake investigations.
Mrs
McLeod: If we were to amend the act in such a way that
the privacy act was given primacy and there had to an exemption
under the privacy act for any other act that was in conflict to
prevail, would that language then be a concern for the colleges?
In other words, if that language of "may disclose" was in the
privacy act, the privacy act prevails, then the concern the
colleges have been raising about how that might affect their
mandatory reporting would be a legitimate concern, would it
not?
Mr
Jackson: I don't want to speak for the colleges in terms
of the answer to it, because there are obligations that come with
being called a health information custodian and there are
requirements that would have to be put in place. To the extent
that we need to go through the specifics of their briefs and also
have the ability to access the answers to some of the specific
questions that were asked by the committee, they will be very
useful for us. We've had a range of meetings on a discussion
paper, not on draft legislation, and now we're at the stage where
the devil is in the details and the answers to the questions that
were posed will be very useful for us because the feedback at the
technician level has been solely on a concept document, not on
legislation.
We would look forward to
those answers. We'll be looking to be able to see the submissions
that come in in detail, because it may be more than the "may"
clause; it may also be the requirements that come with being a
health information custodian.
Mrs
McLeod: Exactly. One of the college's recommendations
was that they not be defined as a health information custodian,
which carries its own set of complications in terms of how their
regulatory powers would then be affected under PHIPA.
The Chair:
Thank you very much, Mr Jackson.
1320
MARVIN SIEGEL
The Chair:
We are joined by Mr Siegel. Mr Siegel, if you'd like to come
forward, thank you very much. I just wanted to put on the record,
as I did yesterday afternoon-Mr Siegel, please don't read
anything malevolent into this-one of the things we caution
witnesses before committees who may not have appeared before is
that while the MPPs 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 testimony you have given or are about to
give could be used against you in a legal proceeding. We caution
witnesses to take this into consideration when making their
comments. Now it's on the record, once every afternoon. With
that, welcome to the committee. We have 10 minutes for your
presentation.
Mr Marvin
Siegel: I shall keep my eye on my watch, Mr Chairman.
Thank you. I'm an almost-70-year-old widower who is the victim of
a fraudulent doctor.
The Chair:
You might want to sit, because Hansard has a hard time picking it
up.
Mr Siegel:
Do you have an objection if I stand?
The Chair:
I don't, but if Hansard-as long as you speak clearly into the
microphone.
Mr Siegel:
I'm much more comfortable standing and speaking than I am
sitting.
Very simply, I had
vibrations about this particular psychiatrist. I searched out my
own OHIP billing records, pursuant to section 38(2) of the Health
Insurance Act, and found out that he was billing me fraudulently.
I was a member of a bereavement group for only a short period of
time as a result of the loss of my wife. This psychiatrist was
billing me for much lengthier sessions than the group's were, and
that's across the board with all the people, and, in addition
thereto, he was billing me for specific two-and-a-half-hour
sessions of individual in-patient psychotherapy that did not take
place.
Very simply-and I realize
I'm restricted in time, so I'm keeping my eye on my watch-I
reported him to the Ministry of Health and I reported him to the
College of Physicians and Surgeons. I took an endless amount of
time to go through the process with the legislation that Ms
Lankin was the sponsor of way back in 1991. The 120 days is a
farce under that legislation, even for the simplest complaint.
The college, notwithstanding the fact that they had from me very
detailed listings of this doctor's billings from the Ministry of
Health's provider services monitoring control, saw fit to dismiss
my allegations against this doctor as billing disputes. I could
see where uninsured services might end up in billing disputes,
but insured services are not billing disputes; the billings are
either honest or dishonest. I want to make this fast.
Very simply, I then, pursuant to Ms Lankin's
legislation, brought an application for a review to the Health
Professions Appeal and Review Board. That matter has been
reserved in decision by that tribunal now for 15 months-not on
the allegations of billing, because we withdrew those pursuant to
the legislation at the Health Professions Appeal and Review
Board, but on the basis that it would be redundant to have the
Health Professions Appeal and Review Board return it to the
college through complaints to refer to discipline when he was
already going to be disciplined pursuant to the conviction under
the Criminal Code.
This doctor was then
suspended by the college, and he was convicted but did not go to
jail. This is the area where we talk about records and personal
information. I'm aware that the College of Physicians and
Surgeons people are here; I know most of them. I know what their
submission is going to be; I know what the submission is going to
be from the point of view of others who are representing
organizations. Simply this: this psychiatrist created charting
that indicated that I was a heterosexual pedophile with regard to
my own daughters and wrote medical reports to that effect. So
when it came to the criminal proceedings, I put in a victim
impact statement, which I'm advised is the first victim impact
statement ever filed in a criminal proceeding with regard to a
doctor who was convicted of fraud in his OHIP billing. That
victim impact statement was presented by the College of
Physicians and Surgeons to the discipline panel.
Very simply, I suggested to
the counsel who acted for the college at that point in time, "Why
don't you do the following, if you're going to ask for a
suspension"-which they ultimately got. I searched out 47(2) under
the Freedom of Information and Protection of Privacy Act, which
is an issue before you, which I fully understand, and very simply
I held off bringing my application because I don't anticipate
being asked to become Chief Justice of the Supreme Court of
Canada at this age, or Canadian ambassador to Israel, so a
security check would be of no major importance to me.
But I stand before you with
a health record at the Ministry of Health which is totally and
utterly false that says I was an in-patient at a psychiatric
facility. I have a letter from the solicitor of the hospital
where this particular psychiatrist has privileges which clearly
indicates, as I knew, that I have never been an in-patient on any
service from that hospital, nor have I ever been an in- or
out-patient at any psychiatric facility.
I suggested to the college,
as I suggested to the assistant deputy minister of health, the
general manager of OHIP, "Why don't you assist the public under
3(2) of Ms Lankin's act, objects of the college, in the code?"
Section 3(1) is the objects; 3(2) says in carrying out the
objects the college shall preserve and protect the public
interest. I asked the Ministry of Health to advise the patients
of this particular psychiatrist who have fraudulent records at
the ministry of section 47(2) of the legislation and, in addition
thereto, to tell them what to do and how they fill out the form
and how they go about it. You know what's going on with that,
with Cavoukian. I know you've had before you the other patients
of Dr Scott, so I'm not going to repeat what you already
know.
Very simply, the reports
that indicate I'm a heterosexual pedophile, the charting that
supports some of it, are at the College of Physicians and
Surgeons; they're one custodian. It is now at the Health
Professions Appeal and Review Board, and I will not mention names
because of the fact there are civil proceedings pending. Very
simply, there are mix-ups. You must look, in considering this
bill, at the sections of the regulations under the Medicine Act
with regard to professional misconduct, with regard to the issue
of the capacity of a doctor to give out medical information about
you, with or without your consent. You must look at the
provisions of the Regulated Health Professions Act procedural
code with regard to the capacity of the Health Professions Appeal
and Review Board, that when they get documents from the college
coming to them, they have the power to didact whatever becomes
public-but how many people see those records?
In my own situation
involving the hospital-the only hospital I could have been
admitted to as an adult, because this is the only hospital where
this psychiatrist had admitting privileges-very simply, they
wrote to me and said, "The hospital, under the provisions of the
Public Hospitals Act, is the custodian of all in- and out-patient
records." They asked me post-fact for an authorization. When I
sent them the authorization, they told me their cupboard was
bare. I believe that was risk management with regard to their
position or their own possible exposure under the Public
Hospitals Act. That's another issue.
There are so many ways all
this information can go. I have to go public with it in order to
commence a civil action, which I've done. The health pro board
has it, the college has it, and I just want to tell you one thing
about the college. I will say one thing about the College of
Physicians and Surgeons that is definitely in their favour. They
go much further, under section 23, again of Ms Lankin's act,
under the code, to make available to the public information that
is not available from the other colleges. But when you make a
complaint against a doctor, you must give them a consent on their
form. They then write to the doctor for the charting. In my
particular situation, with no disrespect to anyone, there was no
clinical issue; the issue was credibility. I provided them with
the authorization; they obtained charting from various doctors,
because there happened to be four involved in the situation-one
who very briefly treated a child.
They had never been asked
this before, but I said, "How do I know that what they provided
to me on the basis of my authorization is exactly the same as
they provided to you on the basis of the authorization I gave
you?" They'd never been asked this before. "Please make it
available to me." From one of the doctors' charting, there were
two additional pages that involved not only myself and other
patients, but did not involve the child who this particular
physician was treating, and said-this particular physician had
nothing to do with me; he simply was treating the child. He wrote a report that
went to the college that said, "Marvin Siegel is in crisis and
he's going to break down any day of the week." Somehow it hasn't
happened for almost six years since that doctor, who was not
treating me, in whom I never confided, wrote that report. So
these people can write anything, and in my situation-I appreciate
I'm virtually running overtime-it's as follows: this particular
physician, in order to destroy my credibility, in order to
destroy my reputation, wrote charting and reports which were
totally and utterly false. How do I get rid of them?
1330
I'm well familiar with
McInerney and MacDonald in the Supreme Court of Canada, and I
hope this bill does not knock out McInerney and MacDonald in the
Supreme Court of Canada, which I assume some of you know of. It's
the case that deals with charting. Has anyone got any questions
on that one? I'll just assume you know what I'm talking about.
McInerney and MacDonald provides for the patient's right to
charts. The doctor can only refuse a chart on one of two bases:
if, by getting the chart, the patient may be at some risk at his
own hand, or if some third person may be at risk at the hand of
the patient. But if that isn't the case, then if the doctor
refuses a chart on one or the other of those two bases, or both,
you can go to the superior court, which would exercise its
superintending jurisdiction to decide whether the doctor's
refusal should be upheld or he should be ordered to give you the
documents. This particular doctor has never availed himself of
that. The hospitals never provide additional charting.
There are various pieces of
legislation you have to look at. You have to look at the
regulations under the Medicine Act. I can recall when the omnibus
bill was first passed-and I believe it has been incorporated into
the Health Insurance Act now-there was a section, if my memory
serves me, something around 26, that said, "When you receive an
insured service, you are deemed to have authorized the release of
your personal medical information for purposes of enforcement of
the provisions of the act." What that means is as follows:
another patient of the doctor brings some allegation against the
doctor as to false billing. OHIP-Keith Mesham, OPP anti-racket
squad, Ministry of Health, fraud investigation unit-now come in.
They can look at my file. They can see that I'm being treated for
HIV or AIDS or some other socially transmitted disease. Is the
only protection I have if I pay a doctor directly? Is that is the
only way I can protect my own personal health records? Is that
the only way?
There are these various
aspects of other pieces of legislation, and if I'm repeating
stuff you've heard before, I'm terribly sorry. I've tried not to
step on the toes of other custodians. I approach it strictly from
how this situation has affected me. I have not yet applied. I've
been in touch with Mr Baker, who acts for Dr Scott's patients,
for Mr Murray and the others and Stanley Burke etc, who I
understand have been before this panel.
I've basically run over my
time. I could go on, but I'll be prepared to answer any questions
you may have for me. But this bill has to be changed if not
totally knocked out. It's totally and grossly unfair.
I might just put this to
you as well. In my own investigation, what I've done is this-and
I can produce this for you. Risk management is a very important
issue in all areas of health care at the moment. I became aware
of a form that was put out by an American organization called
Dental Risk Management. That form is basically a whole file for a
dentist on a patient, but the key parts of it that concerned me
were that not only do you give the dentist a total dental history
but you give him a total medical history that involves hepatitis
from A to Z and everything possible, and you sign an
authorization on the bottom that, for his purposes in knowing,
you authorize him to get your records.
There's one I just want to
tell you about, and Ms Lankin may remember this. In January
1996-if you'll indulge me just for a moment or two, please-there
was an article, a Canadian Press wire service story, that I
called the Canadian Press Ontario desk on, and found out it was
Tom Blackwell, who used to be a Canadian Press reporter here at
Queen's Park. He's now Southam News at Queen's Park, the last
time I heard of him. Very simply, he wrote an article that went
out on the wire service. I saw it in both the Toronto Star and
the Toronto Globe and Mail. What it said was "General
Practitioner Does Heart-Lung Transplant Surgery in Patient's
Home." The headline is enough to make one think. It involved a
doctor, if I recall correctly, in Brantford. He alleged that he
performed these services in the patient's home with a local
anaesthetic. I don't know if the local anaesthetic applied to the
residence of the patient or if it applied to the portion of the
corpus where the local anaesthetic was injected, but very simply,
he did it to test the system.
Let's just look at this
from the perspective of this patient. We know the system. I will
say this-because you people legislate this province in terms of
health insurance etc-the people at OHIP, at 2195 Yonge Street,
from Arlene Heins down, and others, have been so fantastic to me
in explaining to me how the systems work.
The doctor goes on his
provider number; he bills against a patient's health number.
Let's assume this man whom he billed the heart transplant to was
a young man with a family, going to apply for insurance, putting
on a mortgage, the whole scene. The only way the doctor who
billed falsely for the heart-lung could have billed against him
was on his health number. However he acquired it isn't the issue;
he billed on his health number. When he admitted that he was only
doing it to test the system and the money would be held by his
solicitor to be paid back to the ministry if they requested it,
was that false billing removed from that patient's health record?
What if he didn't know and he made applications for
insurance?
I've covered this
extensively in my own victim impact statement, but subsequently
it got into the very first victim impact statement-I appreciate
I'm out of time, and I'm virtually finished-filed by the Ministry
of Health, by Dr Steven Ingle, who was one of the medical
consultants at
provider services monitoring control in Kingston, at the criminal
proceeding involving Dr Donald McDiarmid, who's before the
discipline committee of the College of Physicians and Surgeons
tomorrow on 51(1)(a), having been found guilty of an offence
relative to suitability to practice. He deals with the impact on
the system, the impact on other doctors and particularly the
impact on patients.
How does a person know that
a doctor puts in a false billing for you? If you apply for
insurance and you don't know that that doctor put heart
transplant surgery on your record, you are in theory making a
false declaration on your application for insurance. And what a
lot of people don't know is that downtown on University Avenue,
not too far from us, there's a database that's run by all the
insurance people, and if you make an application to company A and
they turn you down, for whatever reason, company B can access
that. What happens if he's involved in an accident? What happens
if he dies and the insurer denies the wife, who may be the
beneficiary and the executor of his estate, who has to then say,
"Here's an authorization to search his health records"? "Oh,
we're not going to honour that insurance policy, poor widow. Your
husband made a false declaration on his application for the
insurance. He didn't tell us about the heart-lung transplant
surgery."
The Chair:
Thank you, Mr Siegel. I did in fact indulge almost twice as much
time because we had a cancellation in the slot after yours.
Mr Siegel:
I picked the right slot.
The Chair:
You certainly did. We appreciate your bringing this before us. It
certainly raises issues that go beyond this bill.
Ms Lankin:
I recognize there's no time to ask Mr Siegel questions. I would
like to ask the Ministry of Health, if they're so inclined-it's
just a request from a committee member-to assign someone to sit
down with Mr Siegel and prepare a detailed summary of the various
interactions he has had with these different pieces of
legislation and their privacy protections so the committee could
actually have a story template of what Mr Siegel has gone through
and the various pieces of legislation that he is asking us to
have consideration to as we're looking at this. I think it would
be very hard for us as committee members to understand all that,
but perhaps the ministry might be able to put it in a fashion
that is usable for the committee.
Mr Wood:
Perhaps I might be able to leave Mr Siegel with my card and he
can contact us at our office-if you would, if you're so inclined.
If you don't want to do that, of course, that's fine too. Perhaps
I can leave you with my card. You can contact our office. Don't
do it before tomorrow, because I'll have to tell them about this
first.
Mr Siegel:
I'll be busy attending the McDiarmid hearing at the college
tomorrow, sir.
Mr Wood:
We'll see what we can do to set something up for you.
Mr Siegel:
Mr Chairman, may I have 30 more seconds, please?
The Chair:
Thirty seconds.
Mr Siegel:
Recently I had occasion to make a motion before the discipline
panel of the College of Physicians and Surgeons on another
doctor-not Dr McDiarmid or the one I was personally involved
with. I have been called a vigilante with regard to health care,
particularly the issues involving fraudulent doctors. I said to
Dr Adams, the then, and still now, chair of the discipline
committee of the College of Physicians and Surgeons, "Dr Adams,
I've been accused of a lot of things, but I want to say one
thing, and that is, I have a very, very wide acquaintanceship in
the medical fraternity, a couple of doctors who I consider to be
close personal friends. Most of the ones I know-virtually all of
them-are honest, hard-working and, what I consider to be an
achievement, everyday, in-and-out competent. But the sad side of
the story is this: professionally I have acted for Mafiosi, one
of whom is reported in the Supreme Court of Canada-the names
aren't important. In my dealings with Mafiosi and criminals, many
of them have been more honest in their personal interrelationship
with me than some of the doctors with whom I've had professional
dealings in the over five years since my wife died."
The Chair:
Thank you, Mr Siegel. I appreciate your taking the time to come
before the committee today.
1340
CANADIAN INSTITUTES OF HEALTH RESEARCH
The Chair:
Our next presentation will be from the Canadian Institutes of
Health Research. Good afternoon and welcome to the committee.
Ms Patricia
Kosseim: Good afternoon. I am accompanied today by
Matthew Furgiuele, a research officer from our ethics office at
CIHR, and Dr Don Willison, an epidemiologist at McMaster
University who has been intimately involved in many of our
ongoing initiatives in the area of privacy and confidentiality of
data. On behalf of the Canadian Institutes of Health Research, I
would like to thank you for this opportunity to comment on Bill
159.
CIHR is Canada's leading
health research agency, effective since June 7, 2000, that
encourages interdisciplinary integrative health research
pertaining to all aspects of health. The objective of CIHR is "to
excel ... in the creation of new knowledge and its translation
into improved health for Canadians, more effective health
services and products and a strengthened Canadian health care
system."
To fulfill this objective,
CIHR is mandated by Parliament to, among other things, exercise
leadership within the Canadian research community and foster
collaboration with the provinces and with individuals and
organizations in or outside Canada that have an interest in
health or health research; promote, assist and undertake research
that meets the highest international scientific standards of
excellence and ethics; and foster the discussion of ethical issues and the
application of ethical principles to health research.
It is in this spirit that
we have come here today to offer our views on Bill 159 and, more
specifically, its research provision at section 32.
We will begin by briefly
describing some of CIHR's ongoing initiatives in the area of
privacy and confidentiality of data, in order to frame the
perspective which we bring to bear on this issue. We will then
proceed to address two specific points in relation to the
research provision at section 32; namely, the role of the
research ethics boards and the need for harmonization of
standards.
As you know, there is a
compelling need to address real and legitimate public concerns
for privacy and confidentiality of personal health information.
As technology advances and the manipulation of data becomes
increasingly sophisticated, policies and guidelines must evolve
accordingly in order to ensure that appropriate safeguards are in
place and that fundamental rights to privacy and confidentiality
are respected.
There is also a compelling
need for health researchers to access data at varying levels of
potential identifiability in order to study fundamental questions
in areas of biomedical research, clinical research, health
services research and population health. The health of Canadians,
the viability of their health care system and ultimately the
state of their economy depend on it.
The governing council of
CIHR identified very early on, as a top priority on their ethics
agenda, the need to develop a balanced policy position that takes
into account both the societal need to access data for health
research purposes and the individual right to privacy and
confidentiality. Part of the ongoing initiatives in support of
this priority included the publication of a compendium of all
Canadian legislation respecting the protection of personal
information in health research, along with a soon-to-be-completed
international supplement.
In June 2000 a workshop was
held entitled Personal Health Information: Balancing Access and
Privacy in Health Research, which was attended by 45 participants
with a wide cross-section of experience and expertise. Among
their recommendations was the need to catalyze dialogue and
mutual understanding between policy-makers, legislators and the
health research community.
In that vein, CIHR, in
partnership with Health Canada and the Canadian Institute for
Health Information, and with the collaboration of Industry Canada
and the Office of the Privacy Commissioner of Canada, has
prepared a series of Q&As on the application of the new
federal act to health research. The aim of this initiative is to
help inform health researchers of the potential implications of
the federal act, apprise them of the issues and begin to engage
them in the current debate.
In a parallel initiative,
CIHR has struck a working group of health researchers to prepare
a series of concrete case studies as a means of describing, in a
language more familiar to them, why data is indispensable; how
the data is actually collected, used and disclosed in practice;
and in what form and whether and how consent is obtained. We hope
this latter initiative will provide the evidence-based scenarios
necessary to assist policy-makers, legislators and privacy
commissioners in appreciating the inherent complexities of health
research.
The need for these case
studies was apparent when, last February 8, in response to a
question by a member of this committee on the possible exception
for epidemiological research, given the need to track individuals
on a longitudinal basis in a manner that would not unduly bias
results, the privacy commissioner answered, "It might be. I would
have to say I've heard that argument made and I've heard a lot of
anecdotal evidence that not having the full sample somehow badly
skews epidemiological research. Not to say it is not out there,
but I have not seen the persuasive evidence that this is in fact
the case. I have not had somebody point to, `The following
studies that were of real importance turned out to be badly
flawed because ...,' for instance." It is hoped that the case
studies currently under development will help advance this
dialogue.
Finally, all the results of
these ongoing initiatives will feed into the work of a
soon-to-be-created CIHR task force on privacy and confidentiality
of data. The mandate is to develop a CIHR policy position during
the course of this year. The purpose of this presentation is not,
by any means, to pre-empt the conclusions of the task force.
Rather, we are here today to provide some interim comments during
what is and continues to be a learning period for us all.
We now turn to our specific
comments regarding section 32 of Bill 159. Subsection 32(1)
provides that "A health information custodian may disclose
personal health information to a researcher, being a person
conducting a research project or program, only if a research
ethics review body designated by regulation has approved the
project or program in accordance with this section."
CIHR supports the
requirement for prior ethics approval by a research ethics board
or REB. REBs are indeed the appropriate oversight body for
assessing the proposed collection, use and/or disclosure of
personal information for health research purposes and determining
the conditions under which it may be done. Independent,
multidisciplinary REBs have been established at a local level in
academic institutions across this country for several years now;
in some cases, well over two decades. They embody a broad range
of perspectives and an enormous wealth of hands-on experience in
reviewing the ethical acceptability of research protocols. They
are composed of at least two members with expertise in the area
of the research under review, at least one member knowledgeable
in ethics, at least one member knowledgeable in the relevant law
and at least one community member.
REBs have acquired the
degree of specialized knowledge necessary to understand the
inherent complexity of research proposals involving various
disciplines and to recognize and promote best practices as they
begin to emerge. They
are well immersed in the issues relating to both the protection
of individual human subjects and the societal need for research.
They are intimately familiar with the guiding ethical principles
of the Tri-Council Policy Statement on Ethical Conduct for
Research Involving Humans, published in August 1998 by the then
Medical Research Council of Canada, since replaced by CIHR, the
Social Sciences and Humanities Research Council and the Natural
Sciences and Engineering Research Council.
1350
The ethical principles
underpinning the tri-council policy statement are: respect for
human dignity, respect for free and informed consent, respect for
vulnerable persons, respect for privacy and confidentiality,
respect for justice and inclusiveness, balancing of harms and
benefits, minimization of harm and maximization of benefit.
REBs have unique
experience, not only with each of these principles but also in
applying them in a proportionate and flexible approach to achieve
overall balance. REBs are specially placed to play both a review
and an educational role. They review research protocols with the
aim of determining their ethical acceptability from the point of
view of the research subject. They also provide an ongoing
consultative and educational function for the research
community.
REBs, therefore, are a
valuable resource and effective outreach tool. CIHR would
encourage the drafters of Bill 159 to consider mechanisms, ab
initio, of involving REBs in the process of implementing the
bill. Rather than emit regulations that may or may not prove to
be workable or feasible in practice, there may be ways of
consulting REBs across the province as a means of informing that
process in the early phases of the implementation of the
bill.
This leads us to our second
specific comment, which pertains to subsection 32(5) of Bill 159:
"When determining whether to specify that a researcher is
required to obtain the consent of the applicable individuals, a
research ethics review body shall consider the matters that are
prescribed by the regulations." In light of this broad wording
and the possibility of regulations, we would like to emphasize
the importance of living and evolving standards in harmony with
other applicable standards in research ethics. The tri-council
policy statement itself reflects a groundbreaking commitment to
common ethical norms that transcend disciplinary boundaries
across the social sciences and humanities, the natural sciences
and engineering and the health sciences. They reflect shared
fundamental values and equality of respect for the rights of
human subjects, regardless of the researcher's discipline.
In 1998, when Quebec
adopted its Plan Ministeriel en Éthique de la recherche et
en intégrité scientifique, pursuant to article 21 of
the civil code of Quebec, expressly recognized was the importance
of harmonization with already-existing standards, including
international ethical norms on research and scientific integrity
and the tri-council policy statement.
Ongoing efforts continue,
with a view to harmonizing or at least facilitating compliance
with both tri-council requirements and the international
harmonized conference good clinical practice guidelines for
clinical trials. The latter guidelines were adopted by the
therapeutic products program of Health Canada in September 1997
for the registration of pharmaceuticals for human use.
More recently, the
presidents of the three federal granting councils, the then
Deputy Minister of Health, David Dodge, and the president of the
Royal College of Physicians and Surgeons recognized the need to
fortify the legitimacy and support for REBs through some form of
accreditation system by an independent, arm's-length body
covering both public and private sectors. While the modalities
for implementation may vary for different research communities,
the need to afford all human subjects with the same level of
protection regardless of the source of funding was recognized as
a basic principle.
Finally, the challenge for
harmonized research ethics standards is one that extends well
beyond Canadian borders. There is a compelling and urgent need to
provide a level of assurance comparable with international
standards if collaborative research is to be fostered and
encouraged. The trend, therefore, is clearly towards greater
harmonization of standards and not the opposite.
Thank you for your
attention. We'd be happy to address any questions you may
have.
The Acting Chair
(Mr Doug Galt): Thank you very much for the
presentation. We have approximately six minutes left-two minutes
per caucus-and I believe we start with the government side. Mr
Wood.
Mr Wood:
Do you have any problem with the concept of ultimate sign-off on
research projects by the privacy commissioner, where personal
health information is going to be disclosed?
Ms
Kosseim: I think the point we're trying to bring forth
is that the research ethics boards have the acquired
specialization to deal with not only privacy and confidentiality
but other important ethical norms that need to be considered in a
balance. Ultimately, the idea of a privacy commissioner also
providing ultimate sign-off is a matter of practical reality and
whether the necessary mechanism can be put in place for a double
sign-off. What the implications are is something that-
Mr Wood: I
don't think it would be a double sign-off. Ultimately, somebody
has to set the policy. The question is, is that a board set up
under regulation or is that someone who has in effect been
approved by the Legislature as a whole?
Ms
Kosseim: I think the REB experience speaks for itself
and that it's a valuable and certainly a rich resource and one
this legislation has recognized, and we support that
direction.
Mr Wood:
You would resist the idea of the privacy commissioner signing
off, would you?
Ms
Kosseim: I don't think we would resist the idea. In
fact, that is the situation in Quebec, where both REB approval
and privacy commissioner approval are necessary. However, in
Quebec the privacy commissioner's role is very defined, and it's coherent in both
the public and private sectors according to the same criteria in
both instances.
Mr Wood:
I'm going to try to slip one more question in if I can. Sorry
about this.
Ms
Kosseim: I'll let my colleague.
Dr Don
Willison: I wonder if I can pose a question: whether the
government would be interested in the possibility of REBs
submitting reports to the privacy commissioner, basically
accountability statements of what they have done over the past
quarter or year, the decisions that have been made and some sort
of summary that would help in that way. My concern would be the
capacity of the commissioner's office to handle the volume of
work, because it is huge, and the expertise that would be
required to be brought on board.
The Acting
Chair: Thank you very much. I'm going to move on to the
official opposition. Ms McLeod.
Mrs
McLeod: First of all, is it possible for us to receive a
copy of the questions and answers you have provided in terms of
the impact of federal legislation on research?
Ms
Kosseim: Certainly. They are intended to be published
very soon. As soon as they are, in the next weeks or month, we
will provide you and the members of this committee with a
copy.
Mrs
McLeod: I suspect I won't have time to return to that,
so I'll wait for you-I just want to focus on an issue you raised
that hasn't come up before, and that's the regulations to be
prescribed regarding consent, subsection 32(5). It is odd to
think about why the terms under which consent would be required
aren't set out in legislation.
I'm not sure if you have
seen the proposed amendment to that section from the Ontario
privacy commissioner. If you haven't, may I just read you what
she has recommended: "When determining whether to specify that a
researcher is required to obtain the consent of the applicable
individuals, a research ethics review body shall consider all the
relevant circumstances, including whether, (a) it would be
reasonable to require the researcher to obtain consent from the
individuals; and (b) the personal health information will be used
only for the purpose of linking or matching information and in a
manner that conceals the identity of the individuals, that keeps
identifiers of the individuals separate from the information or
that deletes the identifiers from the information."
I know you don't have that
in front of you, so it's hard to respond to it, but is your sense
that that's the direction you think would provide that common
standard across all the jurisdictions where they're conducting
research in Canada?
Ms
Kosseim: To be fair to your question, I would have to
read more carefully and in more detail the extract you just read.
I'll let my colleague supplement, but I would probably need to
digest that more carefully.
Mrs
McLeod: That's fair.
Dr
Willison: At first blush, it's reasonable. Again, I
would have to-
Mrs
McLeod: Mr Chair, may I ask on behalf of the committee,
as a point of information, whether we could ask for a response
from the presenters subsequent to today's session as to whether
that particular amendment would meet the concerns they've
expressed?
Ms
Kosseim: Certainly, we'd be pleased to.
The Acting
Chair: We move on to Ms Lankin.
1400
Ms Lankin:
I also look forward to hearing your comments on Ms Cavoukian's
recommended amendments and receiving copies of the Q&As on
the federal legislation. I hope the work you're doing on the case
studies is work that will be finished expeditiously, as well.
Ms
Kosseim: Yes.
Ms Lankin:
It is my pet question to every research group that comes forward.
Explain it to me. I'm very sympathetic to ensuring that we can
continue to do good, quality research. I just don't want to give
free rein in legislation, even to a research ethics board, to
make those determinations where it's not necessary. I want to
make it as narrow in scope as is practical. If you give us the
information of where there is reasonable and necessary research
going on that requires identifiers and of what nature and for
what purpose, we'll grasp it. But nobody's putting those examples
on the table. That's really important work, I think.
Ms
Kosseim: That's exactly the purpose for the undertaking,
They will be an incredibly valuable and insightful tool for
discussion, analysis and dialogue, and we will be pleased, once
again, to provide you with a copy of it when it's complete.
Ms Lankin:
Do you have a timeline?
Ms
Kosseim: We are hoping for a draft by the end of March,
and we would not be averse to the idea of distributing a draft
discussion.
Ms Lankin:
I think that would be very helpful. I have no idea what timelines
the committee and the government will be on with respect to this
bill, but it's important to the bill.
Could you also provide
us-I'm not sure that we've received it yet, but if we haven't-a
copy of the tri-council policy? That would be helpful.
Yesterday we did receive a
copy of a document entitled the Declaration of Helsinki. Could
you tell us, in your view, what standards are contained in the
Declaration of Helsinki, its commonality or not with the
tri-council policy, and is it an appropriate standard? It was
argued that it errs on the side of protecting privacy. More so
than the tri-council policy or not?
Ms
Kosseim: I believe the tri-council policy statement is
founded fundamentally on international guidelines such as the
Declaration of Helsinki. I believe also there are recent
amendments to the Declaration of Helsinki that raise interesting
issues that would have to be looked at in particular to see their
impact and their implications. But certainly at its inception,
the tri-council policy statement was founded on the principles of
those international guidelines.
The Acting Chair: On behalf of
the committee, we appreciate your presentation. However, we're
missing two names, if you don't mind, the other two members of
your delegation, if you'd read that into the record for us.
Mr Matthew
Furgiuele: I'm Matthew Furgiuele, a research officer
with the Canadian Institutes of Health Research.
Dr
Willison: Don Willison, assistant professor in
epidemiology and biostatistics at McMaster University in
Hamilton.
The Acting
Chair: Super. On behalf of the committee, thank you for
your presentation.
Mrs
McLeod: Mr Chair, I just expand on my earlier question.
Ms Cavoukian had another proposed amendment which would involve a
form of lockbox. That may be addressed by your Q&A on the
federal legislation, but if you could also give us some idea of
how that might affect your work.
AIDS COMMITTEE OF TORONTO
The Acting
Chair: I now call the next delegation forward, the AIDS
Committee of Toronto. Welcome. On behalf of the committee, we
look forward to your presentation. As you begin, please state
your name for the sake of the record.
Mr Lee
Zaslofsky: My name is Lee Zaslofsky. I'm the advocacy
and media relations coordinator for the AIDS Committee of
Toronto, also known as ACT. I'm speaking today on behalf of ACT.
My presentation won't be that lengthy. We're not a terribly
legally sophisticated organization. We rely very much on the
HIV/AIDS Legal Clinic of Ontario for information on this kind of
detailed legislation.
The AIDS Committee of
Toronto was founded in 1983 by members of Toronto's gay community
who were concerned about what we now call AIDS. They recognized
that it could be a long time before governments began to address
this issue, which seemed to appear out of nowhere, and whose
causes were a mystery. So they formed ACT to focus the
community's energy as it dealt with the epidemic, to provide
support to those who were ill, prevention information to those
who were not and to advocate for government and private support
for work in this area.
Since then ACT has grown to
be the largest AIDS service organization in Canada, with a wide
range of programs that try to address the increasingly complex
challenges that the AIDS epidemic represents. We are proud that
the support of the community is shown by the 300 members, 800
volunteers and about 25,000 donors who last year participated in
our organization. Our approach is based on partnership with the
communities we serve directly and partnership with other AIDS
service organizations that serve communities we do not serve
ourselves.
From the very beginning,
when AIDS was called gay-related immune deficiency-if you
remember GRID-the issue of privacy was a major challenge for
everyone infected or affected by it. From the outset there was a
heavy stigma attached to people living with AIDS that was
compounded by the fact that in this country the first group that
felt the force of the epidemic was the already-stigmatized gay
male community.
In the succeeding years,
ACT and the whole AIDS community have worked hard to ensure that
Ontarians are better informed about the causes and nature of
AIDS. This effort has had much success, but there is still, in
much of the population, a powerful stigma associated with AIDS
that makes it necessary for every person living with HIV/AIDS to
be very concerned about privacy. It is absolutely essential that
people living with HIV/AIDS keep as much control as possible over
information about this serious health condition. Each individual
must decide how much information should be shared and with
whom.
The consequences of losing
control over information about one's HIV status, as with some
other health conditions, can be devastating and grossly unfair.
People can lose their jobs, their housing, their relationships,
even their lives, if the wrong people find out that they are HIV
positive. Even the fear of losing that control can become a
debilitating factor in people's lives. ACT's clients live with
these challenges every day, challenges that come on top of the
health issues that they must face.
That is why ACT was pleased
that the government of Ontario was planning to propose
legislation that, we hoped, would solve or ease many of the
problems our clients face in relation to health information. A
good law on this subject would be a major step forward in
addressing some of the most difficult issues of HIV/AIDS and
would reinforce Ontario's commitment to the privacy of HIV
information as shown by the establishment of anonymous HIV
testing clinics around the province.
Now the Minister of Health
and Long-Term Care has presented Bill 159, the Personal Health
Information Privacy Act, for consideration by the Legislature. We
are pleased to have the opportunity to comment on it to this
committee and we hope that you will give careful consideration to
our concerns and those that others raise about this bill.
ACT joins with the HIV/AIDS
Legal Clinic of Ontario, or HALCO, and other AIDS service
organizations in urging you to recommend the withdrawal of the
bill. Bill 159 does not adequately resolve the problems it was
presumably designed to address. We agree with the Privacy
Commissioner of Canada, Mr George Radwanski, who said to you
recently, "As for Bill 159, I don't believe that a law that is so
fundamentally flawed in virtually every provision can readily be
fixed.... My suggestion would be to scrap it and start afresh in
a new spirit."
If the government is not
willing to adopt Mr Radwanski's, HALCO's and ACT's suggestion to
withdraw Bill 159, ACT supports the recommendations contained in
HALCO's brief. However, even with these amendments, the bill
would represent a lost opportunity for Ontario to move to the
forefront of those jurisdictions that care about the privacy
rights of their citizens.
The Acting Chair: Thank you
very much. We have about four minutes for each caucus, beginning
with the official opposition.
Mrs
McLeod: I appreciate your being here and adding to the
testimony we received from the clinic yesterday.
One of the concerns that's
raised is the breadth of access that this bill gives to, at this
point, unidentified people, because of the regulatory power of
the minister to expand the list of people who can be recipients
of health care information and because of the ability of the
minister to provide for direct disclosure. In the way the
legislation is written, it's virtually whatever future ministers
may decide. So whatever the intent of the current minister or
ministry, the way the legislation is worded, there could be
changes in the future that would raise concern. What alarm bells
go off for you in that respect? What would be the fears of people
living with HIV/AIDS in terms of their confidential health
information falling into the "inappropriate or wrong hands?"
1410
Mr
Zaslofsky: As you know, as I mentioned before, AIDS is
heavily stigmatized in a lot of situations. Let me give you an
example. Women are more and more becoming a group that is
infected with HIV. It's still a very small group in this country
compared to some other countries but it is growing and it's very
alarming. Women face a lot of issues when they are confronted
with having HIV: relations with their children must change;
relations with their partner, their husband, could change
drastically; relations with their own community could change.
We have worked with some
women of Ethiopian background who have come to us and we said,
"Why don't you go to someone closer to you in Scarborough?" They
say, "No, we have to get out of that area because we might be
seen going to ask for service. We are very afraid that if we
reveal our status to our husbands, they will regard us as
prostitutes," because of course it could never have come through
them, "and they will abuse us and turn us out. Our community
shuns people that are HIV positive, so we would be shunned. Our
children would be taken away from us because we would be thought
of as unfit mothers. So we come to an agency"-they call it a
"white agency"-because, first of all, the service is going to be
good because the white people get better service in our province,
in their view, and, secondly, because it's out of their
community.
When you look at the kind
of fear that those women are experiencing just about revealing
this to an AIDS service organization, you can multiply it when
they have to consider, "Which doctor shall I go to? Shall it be
the doctor that I go with my husband? I can't reveal it to my
husband, so it can't be that doctor. What if I go to another
doctor? Can I trust that doctor to keep this information? Can I
trust him not to tell other people in my community?" All those
concerns.
When you have a situation
as envisaged by this legislation, which gives such broad license
to collect information, to transfer information, and leaves it to
regulation by the minister to decide who and when and how this
shall be done, obviously the problems that these women and many
others like them are suffering from are multiplied many times
over.
I'll tell you what the net
effect of it is: they don't go for service. They say, "I can't
trust the system. So rather than work through the 15 different
acts and regulations over this, I'll stay away." This happens a
lot, with men, women and everyone else.
Mrs
McLeod: Am I out of time?
The Acting
Chair: Just very quickly.
Mrs
McLeod: It may be an unfair question, so I may just
leave it with you, but we're going to hear tomorrow from the
police association. One of the things they will be telling us is
that when a police officer has been bitten, when somebody has
been sexually assaulted and I think there's another condition,
there should be access to an individual's health records. Can you
comment on that?
Mr
Zaslofsky: Yes. That's just rubbish, I'm sorry to say,
this "bitten" business. I don't know where this is coming from,
that being bitten is a risk factor for contracting HIV. The way
to avoid contracting HIV is to adopt safe practices. This applies
to people who are having sex, people who are doing drugs, people
who are in policing, in the helping professions, such as
dentists, and so on. That's the way to counteract it, not to say
the only thing that I should worry about is someone who is HIV
positive biting me or doing something to me. If you rely on that
kind of prevention, you're going to enhance the spread of
HIV.
It's the wrong approach to
say, "I was bitten. Please, I have to know whether the person was
HIV positive." You have to take precautions to avoid risks at the
outset in dealing with people. Police, of course, do this in
many, many cases. They don't wait to see whether the person who
is waiving a gun at them was licensed to have a gun before they
do something. Of course, they have to take steps to deal with the
risks that situation poses. They have to prepare for it and they
have to deal with it at the time. That's what I would say is
the-
The Acting
Chair: Thank you. I think we should move on to Ms
Lankin.
Mr
Zaslofsky: Sorry to go so long.
The Acting
Chair: It's OK.
Ms Lankin:
I'm going to let you just continue on explaining your response,
because the committee will hear these arguments made. In a former
profession I was involved in, corrections, a lot of work went
into developing universal precautions to put in place in
correctional facilities. But at the time, it came out of a case
such as this, and people raise issues of workers' rights. We
heard it from one of the presenters from-I think it was Thunder
Bay, or it might have been Algoma; I can't remember which-who
talked about an orderly in the hospital and people demanding
access to information about patient status.
Universal precautions is
one thing. Are you arguing that if there is some kind of
traumatic event, you're at a highway accident and you're exposed to bodily
fluids, there is no access to records, or people should just be
tested on their own? What's your answer to what will be
proposed?
Mr
Zaslofsky: Yes, people should be tested on their own,
even if the person that has just bled upon you-and of course,
that's not a risk in itself. You would have to have an open wound
or something on your skin for their blood to mix with yours and
so on. So there's a low risk in any case. But even if that risk
were there, you would still say the way to deal with it is to
look and see whether you actually caught the illness, not to look
and see whether the person that you're dealing with had the
illness. That's not the way to do it.
Ms Lankin:
Thanks. I think that answers that.
I want to take this a step
further, then, because I fully understand the case you're making
and that others have made with respect to the lack of privacy
protections in the legislation as drafted. Somewhere between
there and what exists today, which has all of the concerns that
you've mentioned that clients of yours express, it somehow works
most of the time. We're getting more protocols in place, more
sensitivity. Are there specifics in the way the world works today
that need to be addressed, or is it simply that the legislation
as it's proposed gives up many of the protections you think
you've already put in place today?
Mr
Zaslofsky: Yes, I think that's really the problem, that
the legislation seems to be, if I may say so, very closely
focused on what shall or shall not happen with these custodians
of health information. The real problem is the information and
the real problem with the information is the right that the
person has to own it. I think the Ontario government has to
recognize that right and has to proceed from that basis. I think
this bill is going in the other direction and saying, "How shall
we protect people that we define as custodians of health
information from the various kinds of liability and inconvenience
that may arise for them?"
I think there's too much of
that in the act. Obviously, you have to consider it. There's too
much of that and too little of saying, "What about people that
are even now being deterred from seeking service and who worry
about things like what the police association will say?" because
it gives them the feeling that society may be moving in a
direction where all this is going to be opened up to everybody.
If something happens, let's find out if he's HIV positive. That
would be a real catastrophe in the lives of many of the people in
this province, not just for the individuals themselves but for
their families and all the rest of it.
We're concerned about the
trend this bill seems to manifest. We're very concerned that the
Privacy Commissioner of Canada has such a low opinion of it and
will say to Parliament, "I don't regard this as similar enough to
federal legislation to recommend that you recognize it." I think
that's very disturbing. For people who are sensitive about their
privacy issues, that is very frightening.
The Acting
Chair: We'll move on to the government side.
Mr Wood:
Would ACT be satisfied if we passed an act substantially similar
to the federal Privacy Act?
Mr
Zaslofsky: No, I think we agree with the HALCO
presentation that was made to you yesterday, in which-I forget
the name of it, but there is a very good model for privacy
legislation that came out, I believe in Minnesota, which would be
much better than the Canadian act. The Canadian act is better
than this one, so I'd rather have that standard than this one,
but it too has its flaws. I'm sorry I'm not expert enough to
explore that with you.
1420
Mr Wood:
We've heard from some of the other submitters that there are some
forms of research that basically cannot be done seeking consent.
This is basically research where you have a small sample and it's
not practical to research that topic and get consent.
If you are satisfied that
those forms of research did exist-and that's an if you may not
accept, but for the purpose of your answer I'm inviting you to
accept that-
Mr
Zaslofsky: Yes, I understand.
Mr Wood:
If that's right, where would you come down? Would you come down
on the side of not doing the research or doing it basically by
taking the information without the consent of the patient?
Mr
Zaslofsky: I think where we would come down is, don't do
the research unless you can get the consent. But I think we also
have to be creative and innovative and figure out how we can make
it possible to gain informed consent for these things. I'm not
familiar with the type of research you're referring to, but
conceivably there could be ways developed to do that.
Mr Wood:
But would I take it that your position is an absolute one; if you
don't have consent, you should not do research?
Mr
Zaslofsky: Yes, I think so. Our concern is that the
information that relates to HIV, in particular, belongs to the
person who has the HIV, and that should be the principle that you
proceed on. You can't use something that somebody else owns
unless you ask them.
Mr Wood:
Those are my questions.
The Acting
Chair: Thank you very much for your presentation. On
behalf of the committee, we appreciate your presence and
input.
Mr
Zaslofsky: I appreciate the opportunity to speak to you.
Thank you.
PRIVACY MANAGEMENT GROUP
The Acting
Chair: Our next delegation to come forward is the
Privacy Management Group. Would that delegation like to come
forward? We understand you also have a PowerPoint presentation,
and we think everything's set up to go.
Mr Christopher
Comeau: However, it seems my laptop was damaged on the
way here.
The Acting
Chair: Oh, dear.
Mr Comeau: Perhaps we can get
going. We've provided paper copies of the presentation and I can
talk to them.
The Acting
Chair: Certainly. Whenever you're ready you may start.
As you do, please state both your names for the sake of the
record. We have a total of 20 minutes. Use however much you want
for presentation. The remaining time will be split between the
three parties for question and statement purposes.
Ms Jeanne
Bickle: My name is Jeanne Bickle. I'm an executive
vice-president with the Privacy Management Group, and I just want
to say thank you so much for the opportunity to be here. We value
so much the fact that the Ontario Ministry of Health and
Long-Term Care has initiated privacy legislation in the health
care arena for this province. We applaud you.
Mr Comeau:
I'm Christopher Comeau. I'm also an executive vice-president with
Privacy Management Group. We're a Toronto-based corporation and
specialists in the provision of privacy management solutions.
We've come this afternoon
to talk to you specifically about issues of consent in privacy
management and to give you additional comments on the legislation
that's being proposed.
What we'd like to do is
give you a relatively unique point of view on what the impact of
having more extensive use of consent in the legislation might be,
how that would play out with health care providers throughout and
share with you sosme of the information that we've gleaned by
being in this area over the last year or so. We'll probably
support comments that you have, I would assume, already heard
about flaws in the legislation and from other privacy leaders who
feel that there is a need for an extensive rewrite of the
legislation. That is our position as well.
I'd also like to give you
some insight into what we feel are some important consent
mechanisms that can make it possible to have more extensive use
of consent and still have that as an achievable, manageable
process in the provision of health care services.
If you just quickly slip to
slide 2 in your decks, you'll notice that we have this quote that
says, "A problem cannot be solved by considering it at the same
level at which it was created," and in the last 12 months, by
consulting extensively throughout industry, health care, finance
and the various officers of privacy commissioners across the
country, we found that there really is an extensive amount of
miscommunication-or perhaps ill-perceived attitudes-about what
consent impact there is in terms of trying to get consent from
individuals and what is really required in order to institute
privacy. So throughout this presentation I'm going to try and
take it from a truly different point of view.
Slide 3, you see, is our
main stance at PMG. Of course, we believe that privacy is a
fundamental right of the individual and it's all about trust.
It's about the trust that the nation has in its governors. It's
about trust that the nation has in all manners of people who
provide services, including health care, and we feel that in
order to maintain that trust individuals need to have some
measure of control. That control is provided at its finest when
there is a consent mechanism in whatever service is being
offered.
We feel that the
legislation being proposed must not circumvent consent in order
to achieve other expedience. Privacy enforcement demands that we
have legislation of the nature or with the intent of truly
protecting personal information. That legislation is vital. We
believe that it needs to be written, but it needs to be written
in the right way, and when it is put in place, there has to be an
oversight body that will allow that to be enforced.
What we want to correct is
the perception that confidentiality, in and of itself, as it is
talked to in other legislation is sufficient for privacy. In the
security arena-and my background is as a systems security
person-we talk about confidentiality and the preventing of
unauthorized people to see information. That is a vital component
of privacy. But privacy is not about preventing people from
seeing the information; it's about letting the right people see
the right information at the right time, and a consent mechanism
is essential for that.
We also want to talk about
how consent is, in fact, manageable and indeed there is an
electronic approach.
On slide 4 you see four key
viewpoints, starting from the centre right. Essential to all of
this are the patients-the people-and ultimately all of us are
patients at one point or another. So this is about every single
human being who will be impacted by this legislation, without
exception, at some point in their life. These people want control
because your personal information is the most intimate aspect
that you have that you tend to share outwards with society.
On the left-hand side you
see health care providers, who I believe are truly interested in
protecting the trust that their patients have in them and
safeguarding that intimacy, and they do need policies for privacy
management. They need tools which perhaps, I must admit, they
don't think they have right now but which I'm here to say are
available. They need a governance process whereby they know that
they're enforcing their own policies and that their tools are
working for them.
At the head of the chart is
government, of course. We're looking to you for the right
legislation, the right leadership, the attitude that you are
embracing the privacy of the citizens to make sure we continue to
maintain that trust and that you provide some oversight
mechanisms so we know and can truly believe that's the case.
At the bottom you see that
industry is interested in this problem, because we're part of
society and we believe that there are solutions. Some of us have
taken ownership of this problem, or at least an intense interest
in this problem, to come forward with realistic solutions.
So privacy to us is about
the interaction between these four things. We have deeply
discovered it's not about coming up with a simple answer. It's
about coming up with something that truly deals with all four of
those points of view simultaneously, with each person, each
organization playing
their own intimate role in the solution.
Slide 5: how do we go about
getting consent in a dynamic, electronic world when what we have
always done in the past was relatively calm? We got people to
sign the bottoms of forms and documents, filed those consents in
filing cabinets and occasionally looked back from time to time to
see what they may have said. In an electronic world where we have
actually stopped and counted the number of health care
transactions going on-and of course as you would expect they're
in the tens and hundreds of millions-how do we know we have
consent for all of those processes? There has to be a process in
itself for privacy management that is defined, and although it
seems fairly simple on this slide, we've spent a lot of time
talking to people about, would it or would it not work? We feel
that it would.
There is a great need for
education to talk about the things like the difference between
confidentiality and privacy. There's a need to help people put
standards and guidelines in place in their own internal
governance systems so that it's a reliable, useful manageable way
to achieve privacy.
The integration of consent
into health care practices and into health care mechanisms is a
technical challenge, but as you'll see, there are solutions
available. What we have then is a privacy management solution
that can actually be a bridge between infrastructure-processes
that currently exist-and all manners of health care
applications.
There will always be
exceptions. There will always be unusual situations in which
procedures have to be brought forward for the common good of
society or for special protection of individuals in very
exceptional circumstances where they may not be able to act well
on their own behalf. I don't wish to address those types of
exceptions during this, but I do wish to address the vast
majority of health care services and transactions that could be
addressed through an effective consent management system.
1430
In the next slide you see
that there are benefits to consent. It's not perhaps the best
approach to go out into the world and tell everyone that only
because of legislation you are forced to do things a certain way,
because, as you might expect, there would be some resistance.
What we find is that when you go and ask somebody what it is they
need, it makes your life so much simpler that it's very useful to
operate in that way. When we have choice and consent as part of a
mechanism to understand the needs and preferences of individuals,
we actually make the complex more simple.
In the business world or in
the financial approaches that various health care providers will
look at, we know that having the trust of patients is going to
make things better. It's a more useful and a more practical way
to do business. We know that by having consent, you'll be able to
share information in more ways, because you have permission to do
so, and you can dynamically achieve benefits by that by
cross-linking systems or having enterprise-wide solutions that
may not be possible in other means. It just makes good economic
sense to do it that way.
Finally-you see the
bullet-we're able to take a whole new approach. We can actually
provide patients with what it is they want in large measure as
opposed to trying to convince them that what they want is what we
have to offer. It's a fundamentally different point of view. I
think it is human nature to embrace those things which are well
intended for you and to resist the ones that are trying to be
forced upon you. So in many ways the benefits reduce the complex
to something more simple and more achievable. Our experience in
the marketplace is that there are many organizations that see
fundamental advantages to consulting with their clients, with
their patients, about their personal needs, choices and
preferences.
What is the consent
process? You're looking now at slide number 7. Here we've had to
break it down into a really totally new way of looking at it, and
from a technology point of view we had to go and look at new
technologies. A lot of people think a consent record is something
you could put on a piece of paper, or create a very complex chart
with columns and lines and rows that indicate all kinds of
various options about consent. Well, consent depends an awful lot
on the event for which you're going to ask it. We've found that
the complexity of that situation does not suit the bingo-card
approach, as I call it. We've had to go out and examine, and were
lucky enough to find, in this case, that there exist some very
useful types of mathematical tools, new algorithms, which allow
consent to be created in new ways and to make it very
dynamic.
Referring to this slide,
the first process that any organization does when they're
creating consent is to try to understand what options are
available within what series of events. That's a business
analysis process and it can be done. Then there has to be a
mechanism by which individuals can register their consent, and
that means we have to create what we call a pervasive
environment. We have to provide it to them in every single way
that they might want to do that. Whether it's on simple
technology or more advanced technology, depending on the user,
connected to a network or wireless, it doesn't matter; that's all
achievable right now.
The third bullet, consent
maps, is a technology that's now available where we can create a
mathematical expression that represents a very complex consent
matrix for one individual and reduce that from a technical point
of view to a very tiny file that can be stored in a number of
places, attached to a process or a document, or even given to the
individual in certain circumstances. It just depends on what we
want to do. Now we have a tool that exists, that's available,
that allows us to move that consent wherever it needs to be, and
we're away from these big databases and big charts and wondering
what we're revealing simply by having a consent record in the
first place. We now
have this little, highly portable tool and it makes for a
different way of looking at consent.
The fourth piece is that
there has to be software available to all the providers of
services who are holding personal information on behalf of the
clients, who can put in these little plug-and-play software
modules that will use these consent maps as the key to either
allow a process to occur, because it has been consented to by the
individual, or disallow the process because it has not, and
provide a record by which the patient in this case could view
what disclosures were made. It's a more granular approach.
Every one of the things
I've talked to you about requires a different technology, with
different roles by different people. That's why I mention this
aspect of interaction between a number of parties in order to get
a solution. If you think any one person is going to come up with
the answer, what we've found is that that's just too hard to do.
On the other hand, there is an easy way: by sharing the
responsibilities.
On page 8 you see an
electronic consent management approach that's broken down into
some ordinary building blocks. By discussing this with some of
the key privacy legislators and leaders, we found that this is a
tool that is useful to various health care organizations-first, a
clear methodology by which people can understand what privacy is,
how to implement it, where the risks are, what risk management
strategy to put in place, and come out with a plan. It's a
process, but it's nice when there are templates and guidelines to
guide you through it.
There needs to be an
architecture, and I'll ask you to just look quickly at the centre
of the slide that talks about the five key components of
electronic privacy. All five of those components have to be
provided separately, and you'll notice that security is only one
of them. In the time I have available, I can't discuss that in
any greater detail but there is a lot of complexity behind that
itself and the flexibility that it brings to the solution. Then,
of course, some software that can be deployed the way I said, and
service providers who are interested in providing consent
services to consumers and health care organizations. There are
people out there who are willing to help you make it happen.
I'll just skip slide 9
because I don't believe it's in your deck at the moment.
Finally, let me sum up by
saying that in a consent management operation we have government
that's providing legislation, direction, oversight of its
legislation and maintaining integrity and trust with its
citizenry. We need this to happen. We need legislation to protect
personal health care information.
Organizations themselves,
the health care providers, then can go through all the things
I've talked about in the last few minutes in terms of going
through a process, embracing consent, realizing there's a way to
do it, come up with a realistic, manageable, achievable plan-with
a little effort, but it can be done-get some tools, put the tools
in the right place, deploy the solution, and it can be
managed.
Citizens, on the other
hand, which is slide 11, are simply there through a variety of
means to register their consent, to let us know what it is they
agree to, to let us know what it is we can do to provide them
with what it is they need and to view that process on an
individual basis so they can exercise their rights.
In conclusion, slide number
12, what I want to re-emphasize here is the point that privacy is
not fully addressed by confidentiality. It is a much more
dynamic, much more intimate process than just that, although that
is a part of it.
Control of personal
information has to be in the hands of the patients, of the
citizens, and the method by which that control is given to these
people, to all of us, is by providing a consent mechanism. We
believe the legislation has to be strengthened, has to be
rewritten in such a way that consent is used extensively, as has
been mentioned, I'm sure, by a number of other privacy leaders in
this arena.
We believe there must be an
oversight organization to provide governance and means by which
all of this can occur. I've shown you in just a few minutes that
there are structured methodologies available, that there are
unique and different kinds of technologies, which may be what
some people have thought of before, that make this manageable in
terms of delivering a solution to health care providers so they
can do their role in a consent management process.
Overall, I'm hoping this
information will be useful to you as you continue to review this
and that you will realize there are more options available and
that we need stronger consent mechanisms in this legislation.
Thank you.
The Acting
Chair: We have approximately three minutes left, Ms
Lankin, starting with you.
Ms Lankin:
That's one minute for each caucus?
The Acting
Chair: Approximately.
Ms Lankin:
I appreciate your presentation. I don't really have any
questions. I think you've presented a technology option to build
in more consent. You've said that it is possible, technologically
speaking. You may never have seen the silos of technology inside
ministries of the Ontario government if you're suggesting that,
but I'm sure that's true. I think part of what's not answered for
the committee yet is that balance, those few exceptions that you
didn't speak to where the common good, either in terms of
management of the system or in terms of research information,
needs to override the consent principle, and that's what I think
we're struggling with.
Mr Comeau:
We have looked at that in the delivery of a privacy management
solution that included consent. In the initial design phase,
where organizations are creating what we call a consent options
matrix, those exceptions are identified as part of the things we
know about how we have to do business. They are dealt with
seamlessly and appropriately with the technology. However, it is
fundamentally a human decision about what would be done in that
case. So we record that decision and we act accordingly.
1440
Mr
O'Toole: You have quite an interesting presentation.
Part of my background was data security at one time in my life. I
just have a couple of questions for clarification. On page 3,
"The proposed legislation must not circumvent consent." I suspect
we're hearing that consistently. What would you propose to do in
a public sense if people deny consent? Let's say that something
as small as 10% or 15% of the population, just out of
peculiarity, denies consent, and you're trying to deliver a
public policy area. That presents some challenging, as you called
them, matrices of assumptions as well.
Then in a general, oblique
sense, the whole idea of data mining, just a comment on that.
Data by itself today is the power. The individual names and
identities are kind of minor. If you can get some generic
stuff-how old, where you shop and the kinds of things you're
predisposed to do-that's marketing. That's already going on,
actually. It's not invasion of privacy. How do you deal with this
in this kind of complex matrix? Would it be purely in the health
care provision mode or as a privacy thing? Could you produce data
that told them most people over 40 sleep four hours a night or
whatever?
Mr Comeau:
What we have found by looking at the marketplace outside health
care is-we have been approached as an organization with a certain
mastery in this area-that those organizations feel they would
have a tremendous market advantage by including a consent type of
mechanism in their marketing pieces; ie, if they tailor their
data-mining piece, not by what their marketers may have thought
was the creation of a new and innovative product, but by actually
asking their client about preference and about certain things,
and then got that consent as part of being a responsible
corporate citizen, if you will, that would give them a tremendous
advantage in the marketplace. So they have their own spin on
consent, and they like it.
Mr
O'Toole: Yes, that would have to be defined.
The Acting
Chair: We'll move on to the official opposition.
Mrs
McLeod: Something you said almost in passing concerns me
a bit, and that is, if I understood it correctly, that a
non-electronic system makes a more informed consent very
difficult to manage because of the dynamic conditions under which
consent might be required. I guess the reason it concerns me is
that I suspect we're a long way away from having fully electronic
records in the health care field. How far away are we from having
electronic records for, say, doctors' offices?
Mr Comeau:
I don't really feel I'm an expert in commenting on that, but I do
know there are some strong opinions within the ministry on when
an electronic health record would be available. I do know there
are certain subsets of a complete electronic record which are
available now and that there are already millions of types of
transactions which this would apply to today.
I do want to clarify that
regardless of what electronic process may be available, the right
answer is always the simplest one, and if a paper-based consent
would be appropriate, I have no objection to that.
Mrs
McLeod: I suppose there are some areas where it's
absolutely reasonable to expect that consent could be given
through electronic means and that by almost expecting or
requiring that it would be possible to have stronger consent for
things like research or fundraising, for example.
Mr Comeau:
Right. The advantage of having an electronic consent mechanism is
that now it can be vastly reused as an enforcement tool in any
context in which it's appropriate, as opposed to a paper-based
consent which is not an enforcement mechanism; it's really just
an accountability process that you would refer to after the
fact.
The Acting
Chair: On behalf of the committee, thank you for your
presentation and for providing us with some information.
BORDEN LADNER GERVAIS
The Acting
Chair: Our next delegation is from Borden Ladner Gervais
LLP. Come forward and state your names for the record.
The Chair:
Good afternoon and welcome to the committee. Please proceed.
Ms Daphne
Jarvis: Thank you.
Mr
O'Toole: Mr Chair, they gave me the wrong book.
Mr
Gerretsen: Maybe you've finally got the red book.
The Chair:
You're rattling the deputants. John, gentlemen, please.
The floor is yours.
Ms Jarvis:
Good afternoon. My name is Daphne Jarvis. I'm a partner with
Borden Ladner Gervais. With me is my colleague, Jacinthe
Boudreau, also with the firm.
Borden Ladner Gervais is a
law firm in which a number of us, about 15 of us, specialize in
health law and count among our clients, for example, the Health
Care Insurance Reciprocal of Canada, to which we're lead defence
counsel, which puts us in the position of defending medical
malpractice law suits, including lawsuits where there may be
issues of breach of confidentiality or, the reverse, that
insufficient information was provided.
We also provide day-to-day
counsel and advice to a huge range of health care providers,
including public hospitals, psychiatric hospitals, children's
mental health centres, community health centres, community care
access centres, long-term-care facilities and, of course,
individual health care providers: physicians, nurses etc.
Our expertise is derived
from the fact that when health care providers are experiencing
problems when it comes to information issues, they will come to
us. Hence we have some insight into what the problems are.
We've presented numerous
times at conferences and seminars on these issues. For example,
here are some materials from a day-long conference we presented
on Bill 159 just last
month, in conjunction with the Ontario Hospital Association-just
so you know our background and where we're coming from.
We've provided a written
submission to you and thank you for the opportunity to be here
today. Just in passing, I'm briefly going to highlight the things
we like about this legislation. First of all, we like the fact
that there is a bill before you. The list of institutions I've
provided to you for which we've done work is wide and broad, and
currently all governed under a hodgepodge of legislation, if any.
It is often extremely difficult to provide consistent advice in
those circumstances.
We are also very pleased to
see the provisions with respect to protecting the confidentiality
of quality-assurance information. In fact, our own Ontario Court
of Appeal, in a case we've cited in our submission, has recently
recognized the degree to which it is actually in the public
interest to preserve the confidentiality of that information.
We're going to address a
few areas where we think some amendments should be considered.
The first two are somewhat related to each other, and that is
with respect to the requirement for informed consent to youth
disclosure of information and also with respect to the definition
of capacity to provide an informed consent.
I think it's extremely
important for you to gain some insight into the practical
realities in an institution such as a public hospital in dealing
with requests for release of information. In a health records
department of a public hospital on any given day, there are
dozens and dozens of requests that come in for release of
information from the hospital's health records. For the most
part, those requests are received in writing. It would be
extremely rare that the individual whose information is contained
in those records is actually sitting face to face with the person
organizing the disclosure of those records. The records assembled
in a hospital come from numerous health practitioners, a number
of regulated health practitioners, not just physicians and nurses
but social workers, OTs etc. The request is usually in writing
indicating, "I, So-and-so, would like you to provide a copy of
the health record in your institution to me," or, alternatively,
to somebody else.
1450
I would like to contrast
that with the concept of informed consent, which is a concept
that has arisen and developed in the context of medical
malpractice lawsuits which, over time, has developed a principle
of what would an ordinary and reasonable patient want to know or
need to know in order to provide true consent to an invasive
procedure such as surgery on their body. The person who is
advising them as to the risks, benefits, consequences of
consenting or of not consenting is the person who will be
engaging in that intrusive medical act and who is medically
trained and can answer all questions as to what medical
consequences there will be and won't be.
That concept of informed
consent, in our view, very badly translates into consent for the
purpose of collection, use and disclosure of information. There
is not that interface, and to expect there to be such an
interface between an individual and the health provider or
institution is simply unreasonable and impractical, and it will
result, we fear, in chaos. We've pointed out in our paper that
there is no other provincial or federal legislation currently in
force pertaining to personal information that specifies that a
consent be informed in respect of it.
In summary, we've
recommended that the requirement of an informed consent be
removed from the legislation but remain-obviously there must be a
consent, it must relate to the specific information, it must be
given voluntary and not obtained through misrepresentation.
The same sort of concern
arises with respect to the definition of "capacity," which
requires that the individual who is consenting be capable of
appreciating the reasonably foreseeable consequences of giving or
withholding consent to the collection, use or disclosure of
information. Again, how it is that it is perceived that the
person who is making a disclosure decision would be able
ascertain the capacity of a person to understand those things is
beyond, we believe, the reasonable expectation on a health care
custodian.
We realize that the bill
enables there to be a presumption of capacity, but it also goes
on to say, unless the health information custodian "has
reasonable grounds to believe that the individual is incapable
with respect to personal health information." We don't know what
that means. We believe, for example, that it probably means that
a health care custodian would be entitled to presume that a
person over the age of 16 would have such capacity and that a
person under the age of 16 may not have such capacity. But within
the records themselves, there may be indications as to what the
capacity of the person is. Does that mean you expect a health
care technician in a hospital's health records department to read
a record to try to gain an understanding as to what a person's
capacity is? They may be looking at records that are years and
years old, that do not reflect the current capacity of the
patient who is requesting the information, and that is a person
who has no insight, nor should we expect them to have insight,
into what the reasonably foreseeable consequences are of the
disclosure of those records. They may be for non-medical purposes
or they may be for medical purposes. It may be for legal
purposes, it may be for purposes of obtaining benefits etc.
It's simply unreasonable to
expect, in a huge health records department of a hospital, that
there are people there who can foresee consequences of whether
the disclosure is made or not made and are able to assess whether
or not there are reasonable grounds to believe that the person
may not have that capacity. We would hope that it is not expected
in that situation that the health records custodian be fixed with
knowledge of what is actually contained in the records. That's
unreasonable.
In our recommendation we
would say that the definition of "capacity" should be revised to
read, "An individual is capable with respect to personal health
information if the individual is able to understand that the
consent is for the
collection, use or disclosure of personal health
information."
I'm going to move on in our
comments to subsection 29(1), which is the provision that permits
disclosure of health information from one health provider to
another without patient consent. I know there has been some
discussion in the committee as to whether or not there ought to
be a lockbox provision included in that paragraph. In our view,
that is a policy decision and not a legal decision. We won't
comment much further on it, but I did want to highlight two
things for you.
I can certainly say that
the ability for health providers to share information among each
other is badly needed, particularly in this era where much of the
health care delivery is collaborative these days, when we've got
patients going from hospital to home, and a lot of things in
between, and where organizations are banding together to provide
a continuum of care. The fact that there may be two different
corporate entities involved in the provision of that care should
not be providing blockages to the ability to share
information.
Again, just looking at the
practical reality, I'm not sure how a lockbox provision could
possibly function when you look at the amount of information that
we're talking about. Let's use our example of a woman who in the
past has had an abortion and who wishes to lock that information.
That's not just information that is contained in a discrete
health record that was made at the time the abortion occurred. It
may be information that she has repeatedly disclosed over time to
various health care providers as she is providing a medical
history in other contexts. For someone to say to a health care
provider such as a public hospital, "Please share my records to
here, here and there as I direct but nothing with respect to that
therapeutic abortion I had back in 1972," is going to impose on a
public hospital a task that may be undoable and will inevitably,
we believe, result in inadvertent disclosure of such information.
It is probably preferable that the person simply have that in the
back of her mind as she is making disclosure decisions and have
the information disclosed to her personally first.
You may be aware through
the newspapers of the recent completion of an inquest in
Kitchener, Ontario, into the death of a gentleman by the name of
Bill Luft, who, suffering from a mental disorder, murdered his
wife and four young children and then killed himself. In that
inquest there was evidence heard from physicians who were
involved with Mr Luft at various stages, who were unaware of the
involvement of other physicians either concurrently or in the
very recent past. Bill Luft had essentially imposed a lockbox on
his physicians, indicating that he did not wish there to be
information-sharing about his mental illness between them.
In that case, you should be
aware that the jury made the following recommendation. They said,
"Bill 159 is currently before the Legislature and addresses the
access of patient information between physicians. We would like
to recommend that this aspect of the bill be encouraged. This
would allow for better care given to the patient by knowing some
of the past illnesses that have occurred and ensure that another
provider is not duplicating care."
You might want to note that
in that case the lockbox imposed by Bill Luft did not simply pose
a risk to the quality of health care that he received and the
risk to him; it also, in retrospect, might have posed a risk, may
have been a contributing factor to the clear risk it posed to his
family.
1500
On that section, we would
point out that there is a need to broaden the ability to share
information from one health care provider to another to include
not just a health care custodian, but employees or medical staff
appointed within a health care custodian. Often it's unreasonable
in our view to expect the communication always to go through
hospital administration. There is often a need for
caregiver-to-caregiver communication directly.
I'm going to move on to the
provision which relates to controlled disclosure, what we've
called "Controlled Disclosure in Public Interest," which includes
the ability to provide information to police who are in the
course of an investigation or who are pondering an investigation,
or where there is a present or ongoing risk to an individual's
safety. I have to tell you that this area is one in which our
legal advice is sought probably right up there with consent to
treatment issues. It's a very frequent legal issue and it very
badly needs clear language brought to it that will permit health
care providers and the police to very clearly understand where
the lines are drawn.
The ability to disclose
information where there is a present or ongoing risk to an
individual is not new. That has always been part of our common
law and, really, all that the act is doing is codifying it and
making it clear that it applies across the board. There is a
provision which allows for a disclosure of information where the
health information custodian suspects on reasonable grounds that
an offence may have been committed. Again, if this provision is
going to stand, we point out that it needs to be dropped down a
bit so that it would permit disclosure, not just from a health
care custodian but an employee of the health care custodian or a
person on staff of the health care custodian. Often these
situations, again, are face-to-face situations between a health
care practitioner and a police officer, and they need to make
snap decisions.
We realize this is a policy
issue and we don't take a particular position as to how
free-flowing the information ought to be between health care
practitioners and the state in that sense, other than to stress
it needs to be made very, very clear. You need to be aware of
some of the examples that we face that are happening day to day
in real life that are throwing these problems up to health care
providers. It's not just freewheeling police officers strolling
through hospitals looking for health care information.
We've had cases lately in
Toronto where there is gang violence happening, where teenaged
kids walk or stumble into the emergency department of a hospital.
They come by cab or
their mother drives them. In one case in particular I can tell
you a kid had been clearly kneecapped. He'd had a gun put to his
knees and he'd been kneecapped. His instruction to the hospital
was, "Do not tell anybody that I am here. I do not wish the
police to know of my presence and I refuse to authorize you to
disclose anything to police officers." There happened to be a
police officer present in the department for another reason who
the cab driver saw, and the cab driver disclosed to the police
officer the presence of this individual in the hospital.
It was agonizing, the
pressure that was brought to bear on health care practitioners to
provide further information to the police as to who this kid was,
where he'd come from, where he'd been, what he was saying as to
what had happened, who was with him-all of these things. You need
to consider whether the police did not have a very good point
when they said, "Come on. This is very serious. We need to know
this stuff." Because for all we know-you don't know this, the
hospital doesn't know, but what the police know is that there may
be other gang members who are poised to come into the hospital to
finish off the job.
We have incidences of
domestic violence. We have women who will come into the emergency
department clearly with a stab wound, with a shot wound, with
tire tracks on their bodies, who say, "Please, I don't want
anybody to know." They may be unconscious. There may be a desire
to call the police to let them know they have an unconscious
person who has clearly been assaulted. Who is their substitute
decision-maker? The husband who is standing in the emergency
department saying, "Oh, well, she fell down the stairs."
Again, it's a policy issue.
Do you wish to restrict the ability of health care providers to
bring those sorts of situations to the attention of the police in
the absence of patient consent? You've got to give really clear
thought to that.
It's also important for you
to bear in mind that it's not the answer, it cannot simply be the
answer, to say that this is information that is disclosable after
some sort of court process, once there's a search warrant or
there's been some sort of court review or judicial review that
authorizes the disclosure of that information to the police.
Often, it is an emergency and often the information that the
police are wanting is not something that is in a paper record;
it's not something physical that they can seize by way of a
search warrant. A search warrant does not authorize people to
speak to a police officer; it authorizes police officers to
gather physical things. This legislation, Bill 159, clearly
indicates that personal health information is governed by this
legislation whether it's recorded or unrecorded. That's why.
Because you need to know and need to understand that a lot of
this information resides in the minds of the health care
providers, in their memories and what they've seen and what
they've heard, and it's not necessarily immediately recorded nor
is it necessarily ever recorded into a hard document that can be
seized.
Often the ability to
subpoena someone or summons someone to witness is relevant to a
court proceeding that may not happen for years down the road and
the information is required much prior to that, so you need to
bear those considerations in mind as well.
I'll move on to one of the
other authorized disclosures, which is to-
The Chair:
I should point out, actually, we've gone a bit over time already,
so perhaps summary comments in the last minute or two?
Ms Jarvis:
It's a related comment with respect to disclosure to children's
aid societies. The provision would appear to permit disclosure to
a children's aid society so that it can carry out its statutory
functions, which are quite broad. We'd point out to you that that
appears to contrast significantly with relatively new legislation
brought through under the Child and Family Services Act, which
does impose a court-supervised process for disclosure of
information from a health care provider to a children's aid
society.
As a matter of interest,
the Luft inquest jury was asked to comment on to what extent
there should be free flow of information from health care
providers to a children's aid society, and they chose not to make
the same recommendation as they did with respect to free flow of
information between health care providers. I thought you'd be
interested to know that. Again, we take no particular position,
but we simply urge that some clarity be brought to permit health
care providers to know to what extent they are free to disclose
information to a children's aid society, absent some sort of
court process or consent, and absent an immediate concern about
suspected child abuse.
The last thing we would
address is in the paper and I won't bother orally addressing it.
It's a fairly minor point.
The Chair:
Thank very much. We appreciate your detailed presentation and
your taking time to come before us today.
Ms Lankin:
I'm wondering if there is a mechanism by which, if over the next
two days there are any cancellations that we're aware of and
should the will of the committee agree with my suggestion-we
invite these presenters back. It's a very unique and different
perspective that's been offered that the committee hasn't heard
before. I would really appreciate the opportunity to both put
some questions myself and hear other committee members'
questions. They may not be available, but-
The Chair:
As you know, the Chair is in the hands of the committee members.
We, in fact, have some time because of an earlier cancellation. I
am always loath to treat different presenters differently, but
having said that-
Ms Lankin:
What time is available right now?
The Chair:
We have eight minutes available right now. If you'd like, we can
split that between the three caucuses.
Ms Lankin:
If there's general agreement around the room, I'd appreciate it.
I think there is.
The Chair: Seeing that there
is, the rotation this time would start with the government
members, first Mr Wood and then Mr O'Toole.
Mr Wood:
I'd like to ask you a couple of questions about the removing of
"informed" from "informed consent." I gather that no other
Canadian act takes that approach; no other Canadian act that's
been passed requires informed consent.
Ms Jarvis:
Not that I'm aware of.
1510
Mr Wood: I
gather the CSA guidelines don't require that, or do you know
that?
Ms Jarvis:
I don't know.
Ms Jacinthe
Boudreau: Are you talking about the schedule to the
federal act?
Mr Wood:
Yes.
Ms
Boudreau: It does not require informed consent. No, it
does not. I refer you to our material, section 4.3 of the
schedule, which you can read later on.
Ms Jarvis:
It requires knowledge and consent, which is different from
informed consent. We need to be clear. We're not saying there
shouldn't be a requirement that there's consent.
Mr Wood:
The guidelines require knowledge and consent.
Ms Jarvis:
Knowledge and consent.
Ms
Boudreau: It's knowledge of how the information will be
used by the body collecting the information, but it's very
different from the requirements of Bill 159, which sets out
detailed requirements for the informed consent, where the person
must be knowledgeable of the foreseeable consequences of
consenting.
Mr Wood:
Are you aware of any foreign jurisdiction that uses informed
consent?
Ms
Boudreau: Personally, I'm not.
Ms Jarvis:
I don't know.
Mr
O'Toole: I'm quite intrigued by the legal entanglement
here, and I mean that in a complimentary sense. Two points, if I
may, Mr Chair. Informed consent-and it's a reasonable,
foreseeable consequence, that sort of definition. I don't know
how you'd pin that down in a health care sense. If somebody's
going into some kind of exploratory surgery, what is informed
consent in that case? Can you define that somehow? "You're
possibly going to die"-is that general enough?
Ms Jarvis:
If I'm considering to have my gall bladder removed, my surgeon is
required to obtain my informed consent and that includes that my
surgeon is required to tell me what the risks and benefits are,
including reasonably foreseeable risks of having the surgery. He
might have to tell me that the gall bladder could rupture and you
could end up with a bad infection and you might even die. He or
she may also have to tell me what the consequences are if I don't
consent. "If you do not consent to this surgery then you are
going to get progressively sicker and it may be that we'll never
be able to make you well." That's all well and fine, and the
surgeon is required to answer whatever further questions I have.
That's what an informed consent is: how I can tell you what the
foreseeable consequences are if I refuse to disclose your health
record to you or to give it to this gentleman over here whom
you've authorized me to give it to. I may know that your purpose
is because he's your new family doctor and he needs the
information, but how I can tell you what the consequences are to
you if you don't provide me with that consent etc, I don't know;
it's not practical.
Mr
Gerretsen: Just following up on that point and also the
definition and presumption of "capacity," I take it that your
basic point is that it sets out a criteria in the act that makes
it look as if a certain criteria has been met when there's really
no way the other person can know whether that's so or not.
Ms Jarvis:
For the most part. If it's my psychiatrist and I talking about,
"How much do you want to tell your children?" that's doable, but
it's the very rare case where it's actually going to be
possible.
Mr
Gerretsen: I guess the way I look at it is that if a
layperson were to read these various sections, you would get the
impression everything is protected therein, when in actual fact
that may not be the case at all. That's sort of my interpretation
of it. Is that correct?
Ms Jarvis:
I see your point and, yes, that's one possible
interpretation.
Ms Lankin:
I truly appreciate the work that you've put into this
presentation. Your comments with respect to areas of informed
consent and presumption of capacity just blew me out of the
water, I have to tell you. You get used to the lingo and don't
think beyond and just have an assumption that, of course, those
would be the standards that we would impose on this
legislation.
One question on informed
consent: given that in the circumstances you set out it would not
be practical that a person could give the foreseeable
consequences, would that person potentially have liability? As a
health information custodian who has sought consent and has
passed on information perhaps to a third party and that's an
insurer, and the third party cancels the individual's insurance
policy and that was not explained as a foreseeable outcome of
that giving of consent, could there be a liability back to the
individual?
Ms Jarvis:
Of course there are liability concerns, yes.
Ms Lankin:
Just a comment. The other issue on controlled disclosure and
public interest is really interesting, but I want to focus on the
sharing of information between health providers and the Luft jury
recommendations. I think it's very important you drew that to our
attention. One of the things the committee is grappling with is
the whole balance between the individual's control of their own
private health information, that basic human right, and a whole
range of other issues. What's in the best interests of the
individual? There's a paternalistic aspect to that. You've drawn
in, with the Luft recommendations, what's in the best interests
of the family. Are there not other mechanisms of danger or
immediate danger to self or others that would have resolved the
circumstance in terms of the Luft case without saying that
therefore you couldn't conceive of anything like a lock box?
Ms Jarvis: It's important to
understand that the Luft jury was not saying they felt that would
have prevented those deaths-
Ms Lankin:
I realize that.
Ms Jarvis:
-but they saw it as an issue.
The problem is that it's
the putting together of all the information which allows risks to
be assessed. So you can't say, "I think because there's a risk I
need to see this information." Without that information no one
even perceives that there is a risk.
Ms Lankin:
A very good point. I wish we had more time, but I appreciate the
Chair's indulgence.
The Chair:
Thank you very much for the very detailed presentation you
brought to us today.
ONTARIO PHYSIOTHERAPY ASSOCIATION
The Chair:
Our next presentation will be from the Ontario Physiotherapy
Association. Good afternoon and welcome to the committee.
Ms Caroline
Gill: Mr Chairman and members of the committee, my name
is Caroline Gill. I'm a registered practising physiotherapist and
also a member of the board of directors of the Ontario
Physiotherapy Association, the OPA. With me today is Signe
Holstein, the executive director of the OPA.
Over the past 10 years, the
OPA and our 4,000-plus members have not only seen but have also
been part of significant changes in health care delivery in this
province. Ten years ago, 80% of our members worked in publicly
funded health care. Today it's about a 50-50 split: 50% public
and 50% private. We see the trend to privately funded care
continuing in Ontario. I remind you that there has not been an
OHIP licence granted to a physiotherapy clinic since 1967 and our
OHIP pool is capped. So when people need community-based
physiotherapy, those who can afford it will understandably go to
private clinics rather than brave the long waiting lists or the
long drive to an OHIP clinic.
Physiotherapists have a
unique perspective on our health care system. We experience at
first hand the trend away from OHIP services and the implications
of the growth of privately funded health care. That's why perhaps
you can appreciate physiotherapists get a little frustrated at
talk, such as around the last federal election, about resisting a
two-tier health care system. We already have a two-tier system
and it's growing by leaps and bounds.
Because of cutbacks,
hospitals are releasing patients into the community with
unprecedented levels of acuity, but public funding for community
care has not kept up. So patients who have the resources to do so
will naturally go into the privately funded community stream.
More people are paying for their post-surgery physiotherapy,
post-cardiac rehab, post-motor vehicle accident recovery using
Visa, MasterCard or third party insurance coverage than ever
before. This has significant implications for patient records and
is a large part of the reason we are here today.
Our fundamental issue with
Bill 159 is that it's based on the assumption of a publicly
funded health care system. That assumption, as I've said, is
passé. We understand this bill is likely to die on the order
paper. We think that's a good thing and we hope this committee's
work will provide the context for a new bill that is actually in
tune with the current realities of our health care system.
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Allow me to address some
specifics. Physiotherapists are very active in a variety of
health care delivery teams and in numerous care settings. We have
primary access. Patients do not need a doctor's referral to see a
physiotherapist. Having said that, I must tell you that almost
80% of our patients come to us via a physician's referral. The
relevant point here is that interprofessional access to and
exchange of health record information is absolutely essential if
patients are to obtain quick and appropriate treatment.
Lifestyle information can
be particularly sensitive and patients can be especially reticent
to impart it if there's any risk of disclosure, yet we need that
information in order to assess and treat appropriately. It's an
issue for all patients. It's often a big issue for teenagers who
are concerned about lifestyle information being disclosed to
parents, guardians or others. That's why we're worried, as we say
in our written submission, about the chilling potential of clause
42(2)(a), which could force practitioners to disclose that kind
of information.
What you may not be aware
of is the health record custodian role played by physiotherapists
in private practice, nursing homes, home care, industry or
corporate care and a range of institutional care venues. Patients
share not only medical information but considerable lifestyle
information with their physiotherapist in order to obtain
appropriate assessment and treatment.
OPA believes personally
identifiable health information should be used only to advance
the quality of patient care. OPA believes that the assurance of
privacy and confidentiality of health records is crucial to the
physiotherapist-patient relationship. OPA also believes that
access to personally identifiable health information for other
applications, such as research, government planning or hospital
fundraising, should be restricted, if not prohibited altogether.
Information that identifies a patient should be released to third
parties only in the most exceptional of circumstances.
The OPA supports the goals
of Bill 159, but, from our perspective, some of the flaws in this
proposed legislation have to do with the fact that it has been
drafted without a full appreciation of the radically changed care
delivery environment that's out there today. Less and less health
care is delivered solely through hospitals or solely through
physicians. On a rehabilitation team, most of the professionals
are increasingly privately, not publicly, funded. Nursing homes
are privately owned and operated. Home care delivery has been
privatized, and there is a growing trend to close or downsize
publicly funded physiotherapy departments within hospitals in
favour of private clinics in those same hospitals. We call this
"private clinics in public hospitals."
What is also important to
understand in the context of Bill 159 is the recent expansion of
foreign ownership, particularly in the rehabilitation sector.
Over the past few years a few foreign-owned corporations have
moved aggressively to acquire OHIP and private physiotherapy
clinics. So now one has to factor in the likelihood of health
care records of Ontario residents being held in or transmitted to
the US head office beyond the jurisdiction of any Ontario
legislation.
We know. Our members now
work for and report to foreign owners, or at least to those who
report to foreign owners. What we ask you to consider is the
Latin question, "Quis custodis custodes?" or "Who will watch the
watchers?"
The provisions in this bill
about information custodians are fine in a world of manual
records, centralized and publicly funded health care delivery and
domestic ownership. They are less relevant or enforceable in a
world of electronic storage and transmission and in clinical
environments that are increasingly private and controlled by
foreigners.
Even encrypted health
information can be violated by a custodian who shares their
"public key" with a shareholder by simply downloading files to a
laptop. Try and stop that when you do not have an audit trail
that permits easy discovery of the privacy and access breach, or
when the trail leads outside of Canada.
We are not being alarmists.
We are gravely concerned about the security of personal health
information when one considers the rapid and apparently unnoticed
or unchallenged growth of private and foreign ownership in
important components of the health care delivery system.
Recent experience just down
the street from us today illustrates that privately owned clinics
sometimes get into financial trouble and that owners of privately
funded clinics sometimes engage in questionable conduct. Is this
a trustworthy environment for sensitive health records
information? We assert that Bill 159 is largely blind to those
kinds of vulnerabilities.
Bill 159 should not be
reviewed and considered solely within the context of shifting
from a paper-based health record, one stored in the bowels of a
hospital, to an electronic record to be stored digitally and
safeguarded within a public institution. Bill 159 should not be
reviewed with a belief that technology can solve privacy and
access concerns.
The OPA would ask this
committee to be the first to begin an earnest discussion of
important considerations such as the security of health
information within the reality of health care delivery in
Ontario. The reality is that we function in a two-tiered system.
About a third of all health care expenditures are made by
individuals or private organizations and, as I said earlier, 50%
of physiotherapists now practise in private clinics rather than
in public institutions. Another reality is that care is delivered
by considerably more practitioners than physicians or nurses and
in a range of settings beyond a hospital or doctor's office.
If the review does not take
place within the realities of the new care delivery paradigm,
then this legislation will be largely irrelevant in protecting
the privacy rights of Ontario residents and health care
consumers. It will take a very strong ethics review body, a body
with real teeth and a body with a sophisticated understanding of
both the limits of technology and the diverse environments in
which the custodians will operate.
Physiotherapists know from
their own education and practices that prevention is the most
effective health care remedy. What we are asking of this
committee today is to be sure Bill 159 is able to anticipate and
prevent breaches to privacy, in addition to being able to punish
those responsible for any breaches after the fact.
Is a fine of up to $50,000
for an individual or up to $500,000 for a corporation a
sufficient deterrent? How much would a non-resident
pharmaceutical or insurance or medical devices company pay for an
up-to-date, market-specific and accurate database that personally
identifiable health care information would create? Maybe a lot
more than the maximum fine.
OPA is concerned that this
bill apparently emphasizes access to health records over
protecting patient privacy. Section 2 of Bill 159 has a long list
of persons, programs or organizations who qualify as health
information custodians. We believe as a principle that other than
those who are directly involved with patient care, personally
identifiable patient information should not be accessible by
third parties, except in specific and exceptional circumstances
that are mandated by legislation, and only then with informed
patient consent. This would go a long way to making it easier to
enforce access limitations and make it easier to audit
access.
1530
Third party access should
only be permitted in the most exceptional of circumstances and
only after proof is provided that the required information does
not already exist in other forms or from other sources. The OPA
has concerns about the sweeping circumstances in which
information obtained from a health record can be disseminated
without consent from the patient. The provisions, as written in
Bill 159, have the potential to violate the necessary
confidentiality of patient-provider relationships and patient
privacy.
The OPA agrees that health
information should not be distributed unless knowingly authorized
by the patient and that those who receive such information must
take all reasonable measures to safeguard it effectively.
However, the bill unnecessarily expands the instances in which
personal health information may be disclosed without that
person's consent.
For example, subsection
26(5) permits a health information custodian "that is a facility
or organization that provides health care to use or disclose the
individual's name and address for the purpose of fundraising
activities without the patient's informed consent." OPA finds
that to be a remarkable provision. It could lead to health information being used
for a range of commercial purposes such as direct mail and market
surveys.
Further, section 27
outlines other instances in which health information custodians
may provide patient information without patient consent; they are
both dangerously broad and vague. Some of these are to government
for the purpose of "planning or delivering programs or services
of the custodian, allocating resources to any of them, evaluating
or monitoring any of them or detecting, monitoring or preventing
fraud related to any of them"; or for a research project or
program.
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 under clause 27(e) or for research purposes under clause
27(i).
In our view, the
legislation should explicitly state that identifying health
information will not be disclosed if anonymous information is
equally available. If personally identifiable information is
legitimately required, the proposed research ethics body should
adjudicate the request for information.
We suggest that focusing on
technology-related solutions to safeguard access and privacy is
not enough. OPA suggests there is a need for a front-end
information process that includes the following: requiring data
gatherers to specify the purpose for data collection; limiting
the data collection; limiting the use of data collected; ensuring
openness and transparency; allowing for individual right of
access and correction; ensuring data quality and security; and
creating independent oversight.
Another issue is that Bill
159 will have paramountcy over the RHPA. Our concern is that this
could lead to conflicting or inconsistent provisions under the
two legislative regimes, with regulated practitioners caught in
the middle.
The OPA supports the stated
goals of Bill 159. Patient care and protection of privacy are a
major preoccupation for health care practitioners. We put the
challenge to you as policy-makers to not proceed with Bill 159
unless you are satisfied it answers the question, "Quis custodis
custodes?" That question cannot be answered fully if health care
policy continues to be made with blinders on as to the realities
of a progressively privately funded and foreign-owned health care
delivery system. That's the real test for Bill 159.
Thank you for this
opportunity to outline our concerns regarding 159. The OPA looks
forward to continuing a dialogue with the committee and the
Ministry of Health and Long-Term Care on implementation of the
bill.
We'd be happy to respond to
questions.
The Chair:
Thank you. That leaves us only about three minutes for
questioning, so I'll give the time to the next party in rotation,
which is Ms Lankin of the NDP.
Ms Lankin:
Thank you very much. I appreciate the presentation. I think the
points that you make around the organization of health care in
Ontario today and the reality of the public-private delivery
systems are important for us to consider.
I understand your general
principles with respect to the bill, that it needs to be
reoriented around patient confidentiality and not help custodian
ease or management issues. But reading the bill, it would seem to
me that most of the circumstances in which your members provide
health services in the privately paid-for system would or could
still be captured under this bill. They're regulated health
practitioners so they come under the definition there. They're
operating in places that could be independent health facilities,
under that legislation, or could be designated under regulation
within this legislation. Am I missing something? Is there a
segment of the operation or the provision of those services that
is completely apart from the purview of this legislation and
therefore private personal health information wouldn't be
governed?
Ms Signe
Holstein: I think you're correct in that certainly
they're still covered under the Regulated Health Professions Act,
but there's a lot of health information held in privately owned,
privately run, privately managed institutions-not institutions
but non-institutions, and that's one of the problems.
Ms Lankin:
Have you looked at the definition, for example, of "health care
custodian," which really presents a lot of the responsibility and
onus of the bill, and can you give us examples where there's an
operation that would not be covered?
Ms
Holstein: I honestly can't at this point, but I'd be
more than happy to go back and try and find-
Ms Lankin:
That would help, because one of the things the bill also does is
provide the opportunity through regulation to designate certain
things. We may need to look to that. But I suspect, through
various mechanisms-independent health facilities, the health care
practitioner, provision of health care-there are a lot of
definitions there, and when you put them all together it may be
that they're covered, or I may be wrong. We need to know that, I
think.
Ms
Holstein: I have to say I didn't really look at it in
that specific an example, so I will do so.
Ms Lankin:
Maybe you could look at it and also consult with the ministry and
provide that response to the committee.
Ms
Holstein: I'd be pleased to.
The Chair:
Thank you very much for coming before us this afternoon.
CANADIAN MENTAL HEALTH ASSOCIATION, ONTARIO
DIVISION
The Chair:
The next presentation will be from the Canadian Mental Health
Association, Ontario division. Good afternoon and welcome to the
committee.
Ms Patricia
Bregman: Good afternoon. I have two colleagues joining
me. It's nice to be back.
I should tell you that we
will have a more formal written submission tomorrow but we
thought, in the meantime, there are actually some articles in
here that you might find enlightening that relate to this. We
added a little bit
about stress reduction and exercise, so if I see you cracking
your jaws, I know you're reading our material and trying to relax
a little while you're sitting here.
On my right is Dr Barbara
Everett, who is the new chief executive officer of the Canadian
Mental Health Association, Ontario division. She has a clinical
background, so she will be doing a piece at the very end about
some clinical issues. I think she would also be happy to answer
questions that you may have as they relate to mental health
information in a more clinical setting. To my left is Omar Odeh,
who joined us a week ago as the manager of our knowledge
enhancement centre.
1540
I'm going to do the primary
part of our presentation. It's going to be somewhat different
than what you've seen and, I hope, helpful.
I want to start by thanking
the committee for once again adopting what was a very effective
process for Bill 68. Those of you who were part of that
process may not be aware, but we've been on record as saying that
we found that process led to much better legislation. It was a
really good process and, Mr Chair, we appreciate the contribution
you made to that process. We hope that this process again-
Interjections.
The Chair:
Let me just say thank you. One takes one's compliments where one
can find them.
Ms
Bregman: And to the rest of the committee. It relates to
what the main part of our presentation will be at the end, which
is a somewhat innovative recommendation about next steps that we
hope you will take seriously as a solution to how we get this
legislation to become good legislation, and that you'll take it
in the same guise in which I think this committee has been
working. I think all three parties deserve credit for really
focusing on health information legislation as being important and
something that we need to have happen in Ontario. Work needs to
be done on it, but that having been said, we want to come here
with some proposed solutions, not only in content, which we're
not going to go into a lot of great detail on, but in
process.
I also want to say at the
outset-and I don't usually start with personal things-that you
should know that I'm one of the few survivors of the Krever
commission. I was the policy research analyst for the commission
in 1978 to 1980 before I went to law school, and I'm probably one
of the five people, in addition to Juta Auksi, who also worked
for the commission, who actually sat through every single day of
the investigative hearings and read every single file seized. So
I come at this with that history. In 1990 I went to the Ministry
of Health and spent two years working on a previous incarnation
of this legislation and as counsel to the freedom-of-information
office. So I truly appreciate how far this has come in actually
showing up as legislation.
I remember why we didn't
have legislation, which is that the idea of patients having
access to records was considered over the line; it wasn't going
to happen. I think we're starting from a premise of appreciating
the fact we've gotten here and I think it's important to keep
that in mind during our presentation.
There are four points,
before I get to our proposed solution, I think we want to
highlight as being of some concern, although I think remedial.
One is the notion that legislation needs to cover more than
simply the health setting. I understand the rationale is that
this legislation is limited to the health setting and you're
going to have other legislation that will later cover the rest of
the employment setting, the insurance setting. To be honest, that
was the argument made when the Freedom of Information and
Protection of Privacy Act was passed and that was the reason that
health information was not put into FIPPA at the time.
While I certainly think you
have all of the best intentions in the world, I think it would be
really tragic if people's health information outside the health
sector remained vulnerable. What you may end up with is the
patchwork you're trying to avoid, and I thought I could give you
an example of what the problem is. This came not just from the
patient but from the health care people in employment settings
and insurance who presented to Krever. This is not a new problem.
It comes because people are required to disclose significant
information outside of the health setting to get benefits. It
happens more and more that you need it to get your drugs.
If you want a drug plan,
your employer is likely going to administer that plan and you're
telling your employer, "I have this problem." If you have a
mental illness and you've got schizophrenia-you were really sick,
you're taking your medication, you're able to return to work-you
have to disclose a lot of information to your long-term
disability insurer, who will talk about return to work; to your
employer, who will need to accommodate you in the workplace. It's
important that people feel able to disclose that information.
What has happened in the
past, and continues to happen, is that information is protected
when the doctor has it. You consent to disclose it and that's the
end of protection. There's more than one instance where an
employee benefits coordinator, who may be a clerk in an office,
has mentioned to your colleague that you having mental illness.
We know what the stigma of mental illness is about. I think the
government, and we thank them for this, is funding a whole
project in the northeast mental health implementation project
about removing stigma. That one disclosure may ruin that person's
employment relationship for good. It may cause them to lose a job
or to lose a benefit or to lose housing. It's something people
will worry about. We don't want people being afraid to go back to
work or apply for a drug benefit simply because, having disclosed
that information, there is no current remedy. There is nothing
that person can do. There is no law that prevents that disclosure
right now.
Similarly, within the
insurance industry-and for those who haven't read the Krever
report, I will tell you that the insurance industry and lawyers
were the biggest offenders in terms of inappropriate disclosure.
You disclose information to your insurer every single day, and
every single one of us does it: when you get a mortgage, when you
apply for a car loan. There's no law that stops them from
disclosing that to whomever they want. They may say they're not
going to do it, but there is currently on the books no legal
protection.
The same problem of
patchwork and no protection that this legislation is addressing
exists outside the health sector. I can't urge you strongly
enough to reconsider expanding it. If you subsequently put
privacy legislation in place, great, you can do what you're doing
with this legislation and say, "We'll repeal it, we'll amend it."
But if there were one issue that I really think is critical,
that's one.
The second one, which I
know you've also heard a lot about, is the removal of the lockbox
provisions. A lockbox provision was put in in previous versions.
It's a matter of control. It's part of the culture of, "We
control the disclosure of our information."
I've read all of the
Hansards for this committee because I wanted to see what people
were talking about, and I've seen the justification. Often it's,
"If you don't do that, we'll have to retest somebody," or "We'll
have to do the X-ray again," or the lab test. I agree with you:
inefficient. But I guess what I want to bring you back to are two
things. I don't know anybody, myself included, who wants to do a
test again, and I find it hard to imagine that somebody would not
consent to that disclosure. Whether it's a lab test or an X-ray,
I don't have trouble saying, "You can disclose that," and people
will consent. Nobody wants to do it.
What you have to remember
is that much of the health information is not that lab test and
that objective data; it is the subjective data that doctors write
down. I'll give you an example. This came to us from a doctor
during Krever's commission who said, "I have a request from a
patient to disclose information. I don't want to," because what
it said was that this patient went to see her doctor and the
doctor wrote down, "The husband had called me and said that he
didn't like having sex with his wife, and I can see why: she's
big, fat and smelly." That's the kind of information that's in
records. That's number one, very subjective. Not everybody needs
to know that. Why should I as a patient be subject to that kind
of disclosure? The second is the assumption that it's all
accurate and good information. There is inaccurate information in
these records that may be perpetuated because the patient doesn't
know it's being disclosed and doesn't know it's there. I would
think we would want the best quality information disclosed.
Again, I strongly urge you
to look at reconsidering putting in some level of control back to
the patient to say there's certain information that you just-if
you're an in-patient in a psychs unit, why does your whole record
have to go to the ophthalmology unit when you get your eyes
tested? That's what can and likely will happen, because nobody
else but you, the patient, really has the interest in sifting
through the piles of records to decide what goes and what doesn't
go.
I think you're really
running a risk of jeopardizing health care and not improving it.
That's why we distributed the Network magazine. There are a
couple of articles in there about the links between physical and
mental health. If you read the article by the woman who was
mauled by a bear, it's really quite interesting, her experience
as she went from dealing with the health profession as a medical
problem to dealing with them as a mental health problem and the
way in which people looked at her differently. We know that
having a mental health history changes the way the medical
profession perceives you. So I again would strongly urge you to
look at that as a change to the legislation.
The third area that we
wanted to raise is patient access. I do commend the government
for putting patient access and informed consent in. It's an
enormous improvement. This is a tiny change-and I actually
mentioned it to Gilbert Sharpe outside-and it may just be a
drafting thing. As I read the legislation, you not only have to
pay to have your information photocopied; you actually have to
pay to ask to see it and you have to pay if they show it to you,
even if they don't photocopy it. I can't think of a bigger
barrier to access, and I think you've got some internal
inconsistencies. If you're giving informed consent, that assumes
you see what you're consenting to. As I read the legislation, a
health care provider could say, "I want you to consent, but
you're going to have to pay me to do it."
1550
I'd really urge you to go
back and look at those provisions again. I think it's reasonable
to put in regulations to deal with photocopy charges. You may
even have an argument to be made that where somebody repeatedly
requests records that are hard to find, that aren't related to
care, you may want to look at some way of controlling that. But
for the standard requests when you go to the doctor to have it up
front that you've got to shell out money, it just seems to me
unfair and somewhat an unreasonable provision. Ironically, all of
this is about moving into the electronic age, where information
is going to be available like that, free of charge, cheap. That's
the one provision I would urge you to look at.
Before I turn it over to Dr
Everett, the recommendation and proposal we have: we've got as a
starting point legislation that I think has a good foundation.
It's hard to understand, and I'm sure you've heard that a lot.
I've got a lot of experience. I couldn't tell you how this all
works. But I think we can come up with a process that will allow
you to achieve what you want, involve the stakeholders and move
quickly.
Our proposal is that
instead of just having the committee sit down with this, you
throw the stakeholders who are prepared to put aside ideological
battles into a room for a short period of time, time-limited, a
week or two weeks, and what you walk in with is you all agree
that you're going to walk in and the goal is to come out with
legislation, to come out with a consensus where possible,
and if there's a
disagreement you put it aside and you can deal with it later.
What you would come out with at the end of the week is, where
it's just a language thing, you get the language fixed; where
there may be consensus that the policy needs to change-and I
think there are some areas-you recommend to the government,
"Here's the policy." What you can then do is really narrow it
down to one or two issues where you may not have consensus, and
then we come back to you on second reading with that
discussion.
But my guess is we're
prepared certainly to go on those terms and say that what we want
is to come out with good legislation. We don't want to go and
argue at great lengths about a whole range of things; we're
prepared to put those arguments aside. And I think other
stakeholders might be prepared to do it. You would benefit from
the fact that we have the grassroots experience. We know from our
constituents, the people we deal with, what they want to know.
The question I get is, "Will the legislation apply to X?" If we
can sit in a room with the people drafting it and the committee
and policy-makers, I actually think we could fix probably two
thirds to 80% of what's here without going through a very long
process.
At the end of the day we
may still say we don't like some of it, but I think Bill 68
worked because people were willing to put aside ideology to the
point of trying to improve the legislation. If we can arrive at
that, we're putting it forward as a suggestion and we're
certainly willing to come and do what we can to assist you in
achieving that goal in a short time frame and time-limited so it
doesn't go on forever, rather than the consultations where you're
going to be having every stakeholder at your ear telling you, "We
want you to do this." Let us try and negotiate some of the
differences away and see if we can come up with some consensus
and then come back to you, be part of the process.
I'm going to turn it over
to Dr Everett for her comments on the clinical side and to help
you understand a little bit more on the mental health
perspective.
Dr Barbara
Everett: I won't take a lot of your time. I'm neither a
legislator nor a lawyer; I'm a clinician. We're very
straightforward: we want things to be made better, not worse. We
want them to work for us on a day-to-day basis.
Legislation is a blunt
instrument, as you're aware, in that it is incapable of
predicting the exigencies and nuances of everyday lives and all
the various and sundry iterations that occur at the front line as
you interface with your clients.
Just a word of caution and
thought: certainly in mental health, and I'm sure in other
particular health care areas, but in ours especially, we are the
holders of secrets. We hear the things that people want no one to
know, and we can only be helpful if people feel free to tell us
these secrets. One breach ruins a life. You can have your
children taken away from you, you can lose your work. One breach,
and it may not even be public; it's just one thing that's
whispered from one person to another because they weren't careful
enough. I just want to leave you with that thought: the
importance of the retention of people's control over their own
information in our field is life-saving.
The Chair:
That leaves us about two minutes.
Ms
Bregman: We probably can't get questions.
The Chair:
I think this time I'll give it to the government. Mr Wood, if you
have any questions?
Mr Wood:
Would you be satisfied if we passed an act that was substantially
similar to the federal act?
Ms
Bregman: I think we would want to look at it. If it's
close, there are some changes we might like to see. We have not
seen it. CMHA has not taken a position on it so I can only tell
you personally. I think it would not be a bad start for
information protection. I know that's the goal.
Mr Wood:
In what sort of areas would you anticipate asking for change from
the federal?
Ms
Bregman: To be honest, I don't want to give you
something off the top of my head. I could come back to you with
that if it would be helpful.
Mr Wood:
You might want to pass that along to the committee and to the
minister.
Ms
Bregman: Sure.
Mr Wood:
On the issue of informed consent, are you aware of any other
jurisdiction that has informed consent in their law?
Ms
Bregman: It's controversial. I actually think it's
implied in everything. I think if you did not include informed
consent you would probably have a charter challenge. Because I'm
involved in advising on a registry, I talk to the people who do
the research side, for example, and there is a consensus that you
should have informed consent as an ethical standard. I could go
back and look at whether other legislation specifically puts it
in; I've got a compendium. But I would strongly urge you and I
don't see how you can do anything other than informed consent if
you truly want to say that this is control and ownership of
information. I think it's implied by common law, whether it's in
the statute or not. If you move to take it out, I think you would
have really serious concerns raised by a number of people around
the table.
Mr Wood:
The vast majority of consents are not informed consents. If I'm
talking about across the whole spectrum of consents, the vast
majority are not informed consents.
Ms
Bregman: But by common law, you can't really consent if
it's not an informed consent. This is something that a common
law-I'm a lawyer by training. It's got to be an informed consent
or it's not considered to be a valid consent in law. It may not
be in practice, but that's something we argue about a lot, about
how you improve it and make it an informed consent. There is no
reason you can't get informed consent. It provides no barrier to
proper disclosure of information. I think it goes back to the
issue of trust. If you want people to feel confident in giving
information, you've got to have informed consent. There's
something about the term "consent in law" that implies that it is informed.
I'd be interested in seeing anything that tells me that it's
not.
Mr Wood:
Surely that's not the case. "Informed consent" has a very
specific meaning with respect to medical consent. Most consents
are not informed consents by that standard. Most consents given
in law are not informed consents in that sense.
Ms
Bregman: I'd be interested in seeing somebody who signs
a contract that they wouldn't consider informed consent. I don't
have the legal research in front of me but I'd be shocked if you
could go into a court and say that you can give a consent without
being fully informed and that it's a valid consent. I'd be very
surprised if that stood up.
The Chair:
Loath as I am to break up a debate between lawyers on a legal
point, thank you very much for appearing before our hearings on
this bill. I'm sure the ministry staff will take your offer to
heart. Thank you for the time you've put into this
presentation.
Mrs
McLeod: Mr Chairman, could I ask a question?
The Chair:
You sure can.
Mrs
McLeod: We've had a number of presenters today who have
expressed a concern about the silence of this legislation in
relationship to the private sector, to the employer, to the
insurance company. My question is-and I should probably know the
answer but I'm not sure I do-if we proceed with Bill 159 and it's
silent on the private sector aspects-our bill would have primacy
over the federal legislation for the public sector, but does Bill
C-6, the federal legislation, still come into effect as of next
January for health information handled by the private sector for
commercial purposes?
The Chair:
Let's have the researcher get you an informed answer on that
question.
Ms Lankin:
Or a knowledgeable answer.
1600
ELECTRONIC CHILD HEALTH NETWORK
The Chair:
Our next presentation will be from the electronic Child Health
Network. Good afternoon. Please proceed.
Mr Andrew
Szende: My name is Andrew Szende and I am the CEO of the
electronic Child Health Network, or eCHN for short. I'll be using
eCHN a number of times in my remarks. I am here to support the
need for legislation that recognizes the existence of and the
need for integrated electronic health records.
Just to give you a little
bit of background about eCHN, eCHN is the offspring of the Child
Health Network for the Greater Toronto Area, a unique linkage
among hospitals and other providers of health care to infants and
children. The Child Health Network was developed under the
leadership of the Hospital for Sick Children. Its goal is to
increase the coordination and quality of children's health care
across the entire continuum of care, from home care to doctor's
office to community hospital to children's hospital. In addition,
it was the goal of the Child Health Network to reduce duplication
and to ensure maximum efficiency while delivering care of
uniformly high quality.
This is where electronic
transmission and storage of health information comes into the
picture. If we want children to move seamlessly through the
health care system from one provider to another, then it is
obvious that the information must follow the patient. Until eCHN
came along, there was no way for this to happen. As anyone who
has sought care at more than one hospital will know, the right
hand rarely knows what the left hand is doing. You can walk down
University Avenue and visit Mount Sinai Hospital one day and the
Toronto General Hospital the next day, but there is no way for
your health information to move from one site to another unless
you carry the sheets of paper with you.
The electronic Child Health
Network was established to change all that. It is a unique and
pioneering endeavour that has attracted attention from around the
world and its success depends on a public and governmental
understanding of the extraordinary importance of the safe,
effective storage of electronic health information. The
development of eCHN began four years ago as a partnership of the
Hospital for Sick Children, St Joseph's Health Centre in Toronto,
the Rouge Valley Health System, Orillia Soldiers' Memorial
Hospital and St Elizabeth Health Care, which is a home care
provider.
We have developed a system
which integrates electronically the patient charts of the various
newborn and pediatric services in the greater Toronto area. Any
child who is seen by health care providers at more than one
location can have an integrated chart from all the different
locations, with all their different information systems,
available in a single view on a computer screen. Furthermore,
this can happen even though each of the participating
institutions has completely different computer systems.
Consider the example of a
child who is taken to the Centenary site of the Rouge Valley
Health System in the east end of Toronto or to St Joseph's Health
Centre in the west end of Toronto. After performing some
laboratory and/or radiology tests, the doctors and the family
decide to transfer the child to the Hospital for Sick Children.
The health care providers at Sick Kids can see the results of
previous laboratory and radiology tests that were performed at
Rouge Valley or at St Joseph's. If necessary, the charts may be
called up while the child is in transit. Not only that, but the
child's pediatrician can see the child's chart as new data is
added at Sick Kids.
After a while, the child is
transferred back to Rouge Valley or to St Joseph's. Now the
health care providers at both hospitals can see the operative
notes, the discharge summaries and the results of further tests
from any one of those sites. In addition, the family pediatrician
can call up these same charts on a computer monitor in his office
and can continue to monitor the child's progress and explain to
the family exactly what is going on.
If the child requires
rehabilitation or treatment for a chronic condition, he or she
may be transferred to the Bloorview MacMillan Centre. Again, the
health care providers
there can see the integrated chart from the different information
systems at any or all of the other sites. If necessary,
consultations can take place among all the different health care
providers at the different sites and the family pediatrician, all
of whom could see the same integrated records at the same time.
If the child requires further care at home, perhaps from a nurse
provided by Saint Elizabeth Health Care, the integrated health
chart is available to her too.
I would like to emphasize
that this is not just a dream; this is reality: eCHN is the most
advanced integrated electronic health record system in Canada
today. We keep working on it; we keep trying to expand and
improve it every day.
Here is what we do
currently. The data in the integrated chart travels through a
private, point-to-point, fibre optic network. It is not part of
the Internet. It goes from one or more information systems at
each hospital to the server that integrates the data for the
hospitals, and then to the monitor where the doctor, nurse or
other health care provider can see the single integrated chart.
It is up to each hospital to decide which doctors and nurses may
look at the integrated charts. This is the same way hospitals
currently administer both electronic and paper charts. Once a
health care provider is identified, he or she is given a user
name and password for eCHN only. No one else can get to see the
data in an integrated chart. No hospital administrators or
registration clerks get to see anything, because they do not have
the passwords. Those who do have passwords can sign in and call
up any chart. However, they may look only at their own patients'
charts. This is similar to what happens with paper charts. The
difference is that it is much easier for their colleagues, their
administrators or the parents of the children to discover if they
have looked at a chart without having a good reason for so
doing.
We keep a complete audit of
every chart in our system. We are using the most up-to-date
electronic systems available to protect our patients' privacy.
Our health care providers currently have access to about 70,000
children's electronic charts. If any parent or administrator
wishes to do a spot check to find out who has been looking at a
particular chart, he or she can request one readily. This way it
is possible to monitor who has looked at a child's record. Any
user found looking at a chart without permission could be held
accountable. This privacy protection significantly exceeds any
privacy protection ever offered by traditional paper charts.
There are many other
advantages to having an integrated electronic health record.
Paper charts can and do get lost. Furthermore, they can be in
only one place at one time. It is much less likely that an
electronic chart will be lost or misplaced the way paper charts
are sometimes lost or misplaced.
Unlike the situation with
paper charts, it is impossible for an unauthorized user to sneak
into the system to snoop at a child's chart without being
detected. Only authorized users get access to the charts. If they
sign in, the audit trail tells us which charts they have looked
at. If a user signs in but does not use the system, the system
will automatically log him or her out. This protects us from the
possibility of someone sitting down and accessing files from a
terminal that was abandoned by another user. When a user stops or
logs off, all previous pages that had been downloaded to that
terminal are purged from that terminal. Again, it is difficult
for someone to come along and look at pages that may have been
called up by a previous user. If that were to happen, the person
who signed in with his or her password can be held accountable.
Again, this is more secure than the current paper system.
We make available this
integrated chart only if the parents have signed an explicit
consent form at each institution. If the parents do not give
consent at any institution, the data from that institution will
not be included in the integrated chart. We at eCHN have done
everything humanly and technologically possible to protect the
privacy of the individual child and to make available more
information in a more timely fashion to the health care providers
who need that information. We believe this electronic system
saves unnecessary duplication and improves the quality of health
care in Ontario. The eCHN system ensures that when your child
requires health care, all relevant information is available
wherever the care may be provided.
To conclude, I would like
to emphasize that we at eCHN are using the most sophisticated
technology to integrate various existing electronic records, such
as X-rays, laboratory results and discharge summaries within
individual hospitals into eCHN's integrated electronic chart. The
health of children will be improved if we can provide an
integrated health record that is available to those health care
providers chosen by the child or the family, regardless of where
the pieces of the record originated. This is why there is an
urgent need for legislation that recognizes the existence of and
the need for integrated electronic health records.
1610
The Chair:
That leaves us a little over two and a half minutes per caucus
for questioning. This time we'll start the rotation with Mrs
McLeod.
Mrs
McLeod: Thank you for your presentation. I appreciate
it's not a dream but a reality for a fairly small targeted group
of individuals being served right now. Does it extend beyond the
initial groups that were involved in your pilot?
Mr Szende:
It extends to only one new institution that we've added recently,
and that is the Bloorview MacMillan Centre. So it's the first
five that I mentioned, plus Bloorview MacMillan.
Mrs
McLeod: The limitations in terms of expanding it are
directly related to the infrastructure that's needed because it
is a private point-to-point system?
Mr Szende:
It is. There are some challenges. We are working with a number of
other hospitals within the GTA. At the moment, we are looking at
some of the larger hospitals that are considering joining the
network. Two are Sunnybrook and Women's, and Credit Valley.
Some of the others are
trying to work this into their strategic plan because they do
have to make some internal changes to join.
Mrs
McLeod: Does it require a dedicated information manager
to enter the data?
Mr Szende:
No, it doesn't. The system takes the data from whatever
information systems an individual organization may have and
simply copies the data. The data gets fed into a server, but the
data continues to reside in the originating hospital. It
continues to be owned by and controlled by that hospital, updated
by that hospital. The updating simply happens automatically as
ongoing downloading.
Mrs
McLeod: Is there time for another question?
The Chair:
Very briefly.
Mrs
McLeod: Very briefly? I don't know that the answer can
be.
The last sentence of your
brief: what in Bill 159 either helps or potentially hinders the
work that you're doing?
Mr Szende:
Basically, we can continue to do what we are doing with or
without 159. The reason we decided we wanted to come and speak to
you today was simply to illustrate a living lab of how electronic
health records can be used to serve the system and how you can
deal with issues as they come along with policies that protect
the privacy of the individual.
One other thing, and this
may come out later: if you don't allow people to share the
information that they have, in the way that we don't think that
we can, it simply means that some doctors, when they're looking
at a patient's chart, will not have all the information they
could possibly have on that patient and therefore the decisions
that will be made may not be as good as they may otherwise
be.
Ms Lankin:
It's terrific to see you back here again. I remember the
beginning of this project and its hopes-and others, not the same,
but I'm thinking southwestern Ontario, the University
Hospital-based network in the greater London area. I think what's
interesting is you've started from the premise that consent is
required. In effect, you've allowed the parents and the families
in the circumstance to lockbox an institution if they choose
to.
If you translate this into
the larger systems issues that we're looking at and this bill,
which allows for the transfer of information between health
practitioners, and you take it the step that we're all
envisioning of some kind of smart card technology where your
health record is on a chip and you're carrying it around, the
concept of being able to have filing cabinets of either
institutional visits or type-of-practitioner visits and being
able to close some of those drawers at the appropriate time, on
one level it seems reasonable in terms of personal control of
information. From a systems management point of view, which
you've had a lot of experience with over the years, it's contrary
to what we're trying to get to in terms of efficiency, best
utilization, best health outcomes etc.
Do you have any comments on
that in your experience with allowing a lockbox in your own
system?
Mr Szende:
I think that we are using the lockbox and I don't see anything
wrong with it, simply because of the different levels of security
that are needed for different parts of the system.
One approach to this might
be to build in various levels of security, which is quite
possible. The technology allows it with the technology that we
use and that other people use. You can invent as many levels of
security as you wish so that you make available certain types of
data to certain people, and less and less, depending on how
sensitive the information is. Maybe some data don't get made
available to anybody at all. I guess the important thing to
consider here is that the technology will allow you to do it
almost any way you like.
Ms Lankin:
I wanted to ask one other question that shifts-
The Chair:
Very, very quickly.
Ms Lankin:
OK. What you're doing is really interesting. We would like to
know if it's successful. We would like to know what the health
outcomes are for the patients who are in there. We'd like to know
what the cost efficiencies, the management efficiencies are to
the system. We'd like to know if it's a cost-effective technology
because we want to export it through health economic development
measures.
Obviously, research has to
be done. Researchers will tell us perhaps they need identifiers
to follow those people through. Is that a reasonable proposition
for the system, that we should have access to that, or should we
have to ask those families for their consent for that information
to be viewed for research purposes?
Mr Szende:
My view on that would be that it would be reasonable to use that
information in an anonymized form. I certainly would not
recommend using any of this information in a way that the patient
could be identified for research purposes. We are deliberately
not making any of this available for research purposes to
anybody; it's strictly a clinical tool at the moment. But if it
gets scaled to a larger population, then it becomes of value to
researchers. I'd put very strict policies around who you would
give it to and under what circumstances, but certainly not in an
identifiable form.
Mr Wood:
How do you maintain the clinical integrity of the chart if some
information is not on it?
Mr Szende:
When people log on, we have two warnings for clinicians. One is a
reminder about their confidentiality responsibilities as
physicians or nurses and the other is that we warn them that this
is not a complete chart. This deals with some of the sensitive
information that is not there. Rather than flagging that some
information is not here, which is sort of indicating there's some
information here that you probably would want to know but it's so
sensitive that we won't let you see it, we simply offer this
general warning to people that this is a partial record. It
covers the four areas that I mentioned. If you need further
information, then you have to dig further to paper records or by
inquiring to specific departments of hospitals. We are
particularly concerned, obviously, about things like psychiatric
information, which is not included.
Mr Wood:
Mr O'Toole wants to ask some questions. I'd like you to try, in
30 seconds, to describe the benefits that have been identified to
the patients to date from this system.
Mr Szende:
The benefits are simply that the decisions that are made by the
clinicians take into account more information than would be the
case without it.
Mr
O'Toole: Informed consent is the repeated question this
afternoon. I'm wondering, in a very lay sense, if I bring one of
my children into the hospital that's attached to this system-of
course I want the X-rays and the tests done. It goes down the
stream and into the system. How does the parent, custodian,
whatever, stay informed about this new scientific thing that we
decided here in Toronto? Do you understand? The informed part
means you have to tell them all the possible outcomes, or if you
don't do the following, these are the possible downsides, risks.
That becomes an onerous burden, that informed consent. If you
could just comment on that. You do have informed consent, you
say?
Mr Szende:
Yes.
Mr
O'Toole: I'd like you to describe that in a policy,
because I don't understand it. I find it almost ambiguous. It's a
conundrum. Do you understand?
1620
Mr Szende:
I agree.
Mr
O'Toole: If I knew, then why am I asking? If I was a
parent, I'd say yes. Do you understand that? I want the child to
live.
One thing is, how do I know
who's using what system where? You said you have a user ID number
at the end. They log on, they key in a patient record number or
whatever it is.
The Chair:
I think you're already up to about four questions implicit in
there, Mr O'Toole. If he could respond, we're already over the
time.
Mr
O'Toole: It's an ID issue, really.
Mr Szende:
First of all, as far as consent is concerned, we have a little
brochure that describes what eCHN is. The registration clerk
gives that to each parent to read when they first come into the
hospital, and then there is a form that they sign. We have given
questions and answers to the registration clerks to try to
explain what this is for. I've heard some of your previous
conversation. I don't know to what extent that message actually
gets through to people as to what this is for, but we hope that
it does.
We explicitly explain that
the information for eCHN will be made available to the clinicians
at the eCHN member institutions. So when people consent, that's
what they're consenting to. At the other end, when a clinician
calls up a record, he or she simply logs in and calls up the
records that are available on his or her patients.
Mr
O'Toole: Thank you. I appreciate the system, by the
way.
The Chair:
And we appreciate your coming before us here this afternoon and
making your presentation.
Mr Szende:
Thank you very much.
ONTARIO AIDS NETWORK
The Chair:
Our next presentation will be from the Ontario AIDS Network. Good
afternoon and welcome to the committee.
Mr Stephen
Squibb: Good afternoon and thank you very much. I'm
Steve Squibb from the Ontario AIDS Network. We appreciate the
opportunity to speak before you today.
The Ontario AIDS Network is
the provincial association of 52 not-for-profit AIDS service
organizations, or ASOs, and a network of people living with
HIV/AIDS from all across Ontario. It's estimated at the end of
1999 there were approximately 20,000 people across Ontario living
with HIV/AIDS, and new infections are increasing at an alarming
rate. I guess that right now there are probably in excess of
21,000 people living with HIV across Ontario.
Our member ASOs provide a
wide range of services including care, treatment, treatment
information and support services for PHAs. In addition, the ASOs
are the cornerstone of the public HIV/AIDS information awareness
and prevention programs across the province. We are also
committed to advocating for appropriate polity and legislation
that will protect the rights of PHAs and their families, and will
ensure that they have equal access to state-of-the-art care,
treatment, support and all health and social services.
Much of what we'd hoped to
present to you today has already been very well articulated by
people with appropriate legal expertise. In order to avoid
duplication and to save time, our submission is very brief and is
based on the experience of our members and PHAs gained over the
past 20 years or so observing and experiencing the stigma and
discrimination which accompanies HIV/AIDS. It's our intention
with this submission to support the more detailed analyses and
recommendations that have already been submitted to you,
including those by Ontario's privacy commissioner, the Privacy
Commissioner of Canada and the HIV and AIDS Legal Clinic
Ontario.
The HIV/AIDS community
recognized long ago in the struggle to address the
discrimination, stigma and social injustices faced by PHAs that
our present laws don't provide adequate protection of personal
health information. Much of that stigma, discrimination and
social injustice is caused by inappropriate access and/or
disclosure of our health information to and by people without our
express consent. These are also perpetuated by our lack of
appropriate mechanisms to stop and to seek redress for these
violations and breaches, and to gain access to our own personal
health information records and correct any inaccurate information
that may exist in those records.
The key areas of concern
that we'd like to see in health information privacy legislation
in Ontario have not been adequately addressed, we believe, by the
proposed Bill 159.
Those which we believe may arise if the proposed bill is passed
into legislation are as follows.
The law needs to recognize
that we each are owners of our personal health information, not
the government and not any other party who may come to be in
possession of any part of it; our right to control access to and
disclosure of our own personal health information; our right to
access and to correct our personal health information records
without being frustrated by unreasonable barriers or costs; our
need for an effective and easily accessible means to remedy any
violation of our privacy rights or breaches of
confidentiality.
The impacts we see on those
most vulnerable: in a just society, the concerns of the most
vulnerable are more important than money or cost savings. We
believe that most people in Ontario are concerned with protecting
the privacy and confidentiality of their own personal health
information and that they alone have the right to decide who may
have access to it and for what purposes.
However, the sensitivity of
personal health information is probably felt most profoundly by
those who have seen or experienced how their health status can be
used against them. PHAs and their families are among those who
are most likely at highest risk of adverse effects from
violations of their right to control access to information about
themselves and their health status.
In the early days of AIDS,
we know it was commonplace for PHAs to be placed in isolation in
hospitals and subjected to insensitive and sometimes inhumane
treatment. Often people were denied appropriate care and
treatment. Caregivers wouldn't even enter rooms to deliver food
or to clean them. We saw and heard of people being abandoned by
friends and family, fired from jobs, refused medical care, denied
housing and other services. We still all hear of these and worse
things happening in other parts of the world and some people
assume it doesn't happen back home here in Ontario. But evidence
of this fear and stigmatization and the adverse effects on the
lives of PHAs still exists right here.
Our members still talk
today of their daily efforts to advocate on behalf of PHAs or
counsel PHAs who are facing evictions or unjustified lack of
access to housing. Others are facing hostile work environments or
fear that potential employers will deny them access to employment
or fear that if they attempt to return to work when they are
able, they will face unjust termination of employment and loss of
benefits.
In some areas of the
province today, PHAs receiving home care and requiring blood
tests are being charged to have blood drawn in the home and
transported to labs, even though non-PHAs get the service free.
This is clearly discrimination based on ignorance and flies in
the face of universal precautions widely accepted as the standard
when dealing with blood products, whether or not they are known
to contain infectious agents.
We hear from many of our
ASOs that some PHAs will only access HIV/AIDS-related services in
communities other than their own in order to protect their
anonymity. Some PHAs have their prescriptions filled outside of
their own communities for fear that staff at their local
drugstore will learn of their status and divulge the information
to others in the community. We've probably all heard of cases,
some of which have been documented in the media, of children with
HIV/AIDS or children living with family members who are infected
who are harassed at school and refused admittance to school or
daycare.
I can tell you from my own
personal experience that for many years after I was relatively
sure that I was HIV-positive, I didn't get tested for fear that
the information would get into the wrong hands and would be used
against me. I was afraid that I might lose my job or that my
children would be afraid of me or afraid for me, that they would
be teased or ostracized by their peers. I was afraid that my
friends and family might judge me immoral or careless and turn
against me, afraid that my career and my ability to support my
family would suffer if I couldn't take business trips outside of
Canada.
If people don't feel that
they have control of their own health information, they are less
likely to get tested and to seek treatment. And if they do seek
treatment, they may be reluctant to participate in research
programs unless they can have absolute assurance and control of
who can access their information and for what purpose. This
affects the well-being of our entire community, not just those
individuals who are PHAs.
This was recognized many
years ago in Ontario when anonymous testing was introduced. This
was successful in encouraging many people to test in order to
help our education and prevention efforts. But what is the use of
anonymous testing if we can't get anonymous care and treatment
and we can't control access to our own health information?
Without this trust, people are reluctant to test or to access
care and treatment.
1630
HIV/AIDS isn't the only
stigmatized disease and it's not the only health condition which
would give rise to an individual's concern to protect the privacy
and confidentiality of their personal health information. Anybody
with a potentially life-threatening or debilitating disease would
quite naturally want to protect that information from falling
into the hands of unscrupulous employers concerned only with how
long they can work you before you go on disability or concerned
about their insurance premiums if you're on disability for a
protracted period of time, or from other private sector
recipients of their health information who may wish to sell or
trade or make use of it with some profit in mind.
They would also want to
protect themselves and their families from the kinds of
discrimination and social injustices experienced by many who are
perceived to have a highly contagious disease, or one that can be
acquired through some behaviour which others might link with a
lifestyle judged inappropriate.
In conclusion, as we
stated in our introduction, we support recommendations previously
submitted to you. Most specifically, we support the following
recommendations which we've paraphrased here from the submission
to these proceedings by the HIV and AIDS Legal Clinic Ontario, which we
believe would address our concerns.
(1) Abandon Bill 159 in
favour of a general personal health privacy legislation that will
cover the public and private sectors.
(2) Use as a template for
a general personal health privacy legislation the model draft
legislation created by Professors Lawrence Gostin and James Hodge
of Georgetown University Law Center.
Thank you once again for
this opportunity to bring our concerns to you today.
The
Chair: Thank you very much. That leaves us about two
minutes for questioning from each caucus. This time we will begin
with Ms Lankin.
Ms
Lankin: In listening to your presentation, I'm struck by
how far we've come and how far we have yet to go. I was thinking
about how in 1992 we didn't even have practical practice
standards for dealing with patients with HIV/AIDS and the whole
anonymous testing, and now coming to terms with these issues of
privacy and understanding the impact that it has.
As an aside, I had a very
close friend who died of the disease who refused to get tested.
This was just prior to anonymous testing coming into the
province. Those are real life consequences.
One of the things you've
stressed that we've not talked about a lot is the issue of
penalties if privacy is violated. I recognize that part of your
presentation goes to the whole issue in the sense of a lockbox.
We're grappling with that and it's very difficult. But even today
there are rules, there are guidelines, there are professional
college ethics about how information is to be controlled, and yet
there is no effective mechanism when there is a breach of that.
Have you given some thought to what it means to have an effective
and accessible mechanism to remedy breaches?
Mr
Squibb: Yes. In fact, the brief you've already received
from the HIV legal counsel of Ontario covers that fairly well and
has some very specific recommendations around that. Some of the
things they identify are where people are being charged to access
their records, if they can access them at all. Often they are
still being denied access even though they've spent an awful lot
of money trying to access them. I think there was an article in
the Toronto Star today about some poor man who has managed to
access his record and find incorrect information. After spending
$14,000 on legal costs, he hasn't been able to get the government
to authorize the changes to that information. That's really what
it means.
Very often people who may
have been at high risk for catching HIV or AIDS because of their
socio-economic circumstances can't afford to pay anything to get
access to records or to access a process that might achieve some
redress. Very often, after people become infected and sick they
lose a lot of their social and economic status and are facing the
same barriers.
Mr Wood:
We've heard earlier from some of the presenters that there are
certain kinds of research that, because of the small sample size,
you can't do by way of getting permission. For the purpose of
your answer, I'd invite you to accept that as a fact, even though
you might not feel that way. But if we reach the point where
we've satisfied that was the case, do you think we should say we
will, for that purpose, permit access to those records, or would
you stand on the view that if the person doesn't consent, the
information shouldn't be used? That has the effect, of course, of
we've either got to say we will allow some limited access with
proper supervision and oversight and so on, or we've got to say
that research can't be done in Ontario. If you get to that point,
which side of that question would you come down on?
Mr
Squibb: I will take your word for that because I'm not a
researcher.
Mr Wood:
We don't necessarily agree with that either, but for the purposes
of your answer I'd invite you to accept that premise: we've
reached the point where we find that to be the case; which side
of that rather difficult question would you come down on?
Mr
Squibb: I would say that in providing informed consent
for the use of my information I would want to have been made
aware that it may be used for research, and if it's not research
that I can be made aware of today, that at least such research
would be done in an anonymous way that I couldn't be personally
identified from use of that information for those research
purposes. I also would take comfort knowing that there are rules
and regulations and ethical standards that researchers have to
abide by and that if somebody does inappropriately access or use
my information or divulge that information I have some mechanism
for redress.
Mr Wood:
Thank you. Those are my questions.
Mrs
McLeod: I take very strongly from your brief that if we
can't fix Bill 159 it would be better not have Bill 159 with
things like directed disclosures, which would really
fundamentally challenge the confidence in the
confidentiality.
We heard earlier today
that in the Krever commission testimony the biggest offenders of
inappropriate disclosure were insurance companies. As you've
noted, insurance companies and employers aren't addressed in this
bill. If we don't proceed with Bill 159, if we don't have Ontario
legislation, the federal legislation for health information comes
into effect as of January 1. Would that legislation provide
significant protection in the areas that are of greatest concern,
perhaps the greatest concern, to people living with HIV/AIDS in
the sense that it would deal with the private sector employers
and insurers?
Mr
Squibb: You've got me at a disadvantage here because I'm
not intimately familiar with the federal legislation, and people
with HIV and AIDS and the HIV community are anxious to have
Ontario have personal health information legislation in place.
The issue really is that this bill only covers the health care
sector and doesn't include the private sector and so, in effect,
we'll have different legislation that applies to different
people.
Mrs
McLeod: That's fair enough. I guess the concern we're
repeatedly hearing is the fact that this legislation shouldn't go
ahead without there being legislation that applies to the private sector as well,
because of the potential violations and misuse of health
information in the private sector. That's a dilemma we face,
knowing we want legislation but we don't have the companion
piece.
Mr
Squibb: Right.
The
Chair: Thank you very much for coming before us here
today.
SCHIZOPHRENIA SOCIETY OF ONTARIO
The
Chair: Our next presentation will be from the
Schizophrenia Society of Ontario. Good afternoon and welcome to
the committee. Please proceed.
Ms Janice
Wiggins: Good afternoon. Thank you, Mr Chair and members
of the committee. My name is Janice Wiggins and I'm executive
director of the Schizophrenia Society of Ontario. As you know, we
are a non-profit, charitable organization comprised mainly of
volunteers. We are the only province-wide, family-based
organization dealing with persons with schizophrenia and their
families. I'm here today of course to talk about Bill 159, and we
specifically have three significant issues that I'd like to take
you through today.
The first one is ensuring
that family members who act as substitute decision-makers have
ease of access to information. It is imperative that substitute
decision-makers acting for incapable persons are able to access
information in a comprehensive and timely manner. This provision
is found in section VIII of the bill and appears to cover this
particular matter. SSO recommends, however, that the words
"substitute decision-maker" appear in this section and in
appropriate paragraphs throughout Bill 159 for greater
clarification. You can find it obviously in the bill in the front
pages, in the explanation, where the words are explicit:
"substitute decision-maker." However, our organization is very
used to dealing with those words and the recommendation from us
is to include them where appropriate.
1640
Second, ensuring that
information that now moves only between schedule 1 psychiatric
facilities can be shared between institutions and community
programs: it will be imperative so that this continuum of care is
established and very consistent. That is, personal health
information must be provided to a health information custodian in
order to continue the best possible treatment for the individual.
You will find this in subsection 46(1) of the first reading.
Third, avoiding multiple
proceedings with respect to persons with schizophrenia and
personal health information: for example, the one proceeding
under the Health Care Consent Act, heard by the Consent and
Capacity Board, on the question of capacity to consent to
treatment and personal health information disclosure is very
appropriate, we felt, to consolidate it in one spot.
On a related point, SSO
agrees the jurisdiction over records should not be divided; that
is, the psychiatric records are dealt with through the Consent
and Capacity Board. We support legislation that designates the
Consent and Capacity Board as the body that deals with issues
relating to the release of health records.
While my presentation
today is very brief, we certainly welcome the opportunity to
comment on Bill 159. We appreciate its complexity and offer our
collective expertise in any further consultation and development
of legislation.
I want to thank you very
much for your attention today and I would welcome any
questions.
The
Chair: That certainly affords us lots of time for
questions, over four minutes each, and this time we'll begin with
the government.
Mr Wood:
I thought it was a very clear presentation and very helpful to
us. We have no questions, but thank you very much for coming.
Mrs
McLeod: Janice, you've addressed primarily the
substitute decision-maker with some comfort around the provisions
that are provided for access to information if you're clearly the
substitute decision-maker. Do you see problems with having a
lockbox on information for people who are capable of giving
consent to control of their own health information?
Ms
Wiggins: The lockbox has been a long-debated issue and
at this time I really don't have a comment upon it.
Mrs
McLeod: Let me take a situation that I raised in the
Legislature. An individual with schizophrenia recognizes the
diagnosis of paranoid schizophrenia. He had committed a violent
act and has at this point in time spent more time in jails than
he has spent in hospitals, repeatedly being put on a bus, having
been discharged from either his jail or his hospital setting, and
with no kinds of supports at all. I know the primary reason why
that happens is because there just aren't supports there, but are
there transfer-of-information issues that would prevent that
individual from getting the help or the support if it was
available?
Ms
Wiggins: Yes, I think that has been a very significant
difficulty. We've heard from parts of the province where the
information is not transferred at all and not in a timely manner
if it is done in fact. A concern of course we have is that the
most immediate form of treatment is available so that the
person's condition does not continue to deteriorate, nor are
they, as you've put it, put on a bus and shipped outside the
community where they might indeed be residing.
Mrs
McLeod: I struggle with this, and we've had another
incident in northwestern Ontario, as I'm sure you're aware. It
would not in that situation have been appropriate for the police
officers to have been provided with that individual's health
information-I don't think so.
Ms
Wiggins: No.
Mrs
McLeod: But in the interests of public safety, do you
see overrides to that protection of the confidentiality of the
information?
Ms
Wiggins: Actually, there's a very fine and delicate
balance between the public's safety and the individual's safety.
To this particular juncture, I don't see a way around the
information-perhaps on a very limited basis, again, dealing with
the police information. I'm certainly not suggesting that we open
up all records to everybody and anybody who might be in a
position of authority, but wanting to recognize instances where
it's very necessary to do so.
Ms
Lankin: I recall, Janice, the discussions through
Brian's Law around the provision and creation of CTOs that
compelled sharing of information in order for a CTO to be an
effective tool in the community. Of course, the concern raised at
that point in time was that this information was being compelled
to be shared with organizations that were not covered under any
kind of privacy legislation, and in some cases they would now be
and in some cases perhaps they won't be. There are individuals
who will be drawn into that CTO world who will be covered in the
little inadequate clause we put in that bill, but who will not be
covered under this. Does that pose a problem? How do you see the
facilitating flow of information but with protection of where
that information goes and how it's utilized?
Ms
Wiggins: From my reading of Bill 159, I understand there
are protections in place, there are appeal mechanisms in place.
It certainly goes without saying that there could stand to be
some tightening up of it, to make sure that only those people who
are authorized and health care custodians have the transfer of
information, and of course that it is with the informed consent
of the individual or the person who is a substitute
decision-maker.
Ms
Lankin: I've not looked at this so I don't know the
answer but have you looked at whether or not those people who are
brought into the circle of shared information under a community
treatment order would become recipients as defined under this
legislation and therefore governed by the provisions here?
Ms
Wiggins: Again, through the reading and translation that
we've been able to do, it does appear that they would be
protected under this particular piece of legislation.
Ms
Lankin: I want to come back to the provision of lockbox.
I understand that you don't want to comment on it as a concept,
but with the client group you deal with-individual patients and
their families-one of the things we know and have heard about is
the nature of the disease, where people for periods of time are
capable of making treatment decisions and other decisions and at
other points in time are found to be incapable of making those
sorts of decisions.
The concept of rapidly
changing conditions of capacity I think challenges us with
respect to how people give direction about informed consent or
knowledgeable consent for disclosure. Have you given any thought
to whether there are issues? I'm thinking now from the point of
view of families who come to us and tell us often that the law is
such a barrier to get the help they need for their family members
in this circumstance. Can you see any problems that we're
creating in this bill with respect to that issue of changing
capacity and consent for disclosure?
Ms
Wiggins: I don't see any at the current time, given the
interpretation of the law as it stands right now. Again, as we've
emphasized today, with access to timely information, you're quite
right that the condition of the individual changes rapidly.
Schizophrenia is a chronic illness. Sometimes a person is
capable, sometimes they're incapable. There do seem to be
protections under the provision for the Consent and Capacity
Board. To my understanding, within a week's time, a Consent and
Capacity Board hearing will be held. So at this particular stage,
I would suggest that the legislation covers that issue as
well.
Ms
Lankin: Great.
The
Chair: Thank you very much for coming before us this
afternoon.
CLEMENT BABB
The
Chair: Our next presenter will be Mr Clement Babb. Good
afternoon and welcome to the committee.
Mr Clement
Babb: My name is Clement Babb. I live in Burlington and
I appear here as a private citizen. I am quite worried about Bill
159 because of the flawed record of the present government in
maintaining privacy. I'll mention two things which I think I
regard as merely slips; perhaps anyone could make these two
mistakes.
First of all, a few years
ago, the Minister of Health had to resign because a staff member
released information about a doctor's salary. Again, I think this
was not a deliberate thing; perhaps a slip. Also, I'm worried
because last year young offenders were named in public. Probably
this was just a mistake but not something that should have been
done, and we would not like to have that done more.
There are two perhaps
more serious flaws, and that has to do with this: information
thought to be private by ordinary people who had accounts with
the Province of Ontario Savings Office was released to a major
firm for polling purposes-I think this is a terrible thing to
do-and records from the Ministry of Transportation were released
to another private firm, to me flaunting any reasonable sense of
propriety.
1650
I'm worried that once the
bill is enacted as law, it can be circumvented by the adoption of
regulations that we, the people, will not know about. I'm worried
in general because I don't want anyone messing unnecessarily with
my health records or those of my wife, son and daughter. To me,
far too much emphasis is being placed on something magical called
a database and that extensive and intensive information is
absolutely essential for research. Lots of information doesn't
necessarily have to be used for much research. And I don't have
too much faith in a wide variety of agencies to whom private
health information might go. I would like to strike the phrase
I've used here, "charitable agencies," and simply say, for
example, the many university-based departments and think-tanks dealing with
health, health care and health administration.
In conclusion, I
appreciate the chance to express my views. It's been a sobering
experience for me to see the terrific contributions that others
have made to your difficult job.
The
Chair: If you wish, you've left us time for questioning.
We've got just under two minutes per caucus. I'll start off with
the official opposition.
Mr
Gerretsen: You've probably put in layman's terminology
what many people feel about this kind of legislation in general
and how people are concerned about having their information
shared with individuals or organizations and other people who
doubt, perhaps, their knowledge. Was there anything in particular
about the legislation that's being proposed here that you have
any major concerns about?
Mr Babb:
Specifically, I am not really equipped to handle the terrifically
complex stuff that's in here. As I came on the GO train, I
thought of this very question to myself and was a little bit
hesitant to keep coming because I wasn't able to do the proper
analysis of the legislation.
Mr
Gerretsen: It's certainly important that individuals
like yourself come forward and express their views on a piece of
legislation like this. I know there are many different groups
that look at it from different perspectives, but it's always
interesting to hear an individual's viewpoint as well. I, on
behalf of my caucus, thank you for coming here today.
Ms
Lankin: Equally, let me say that it is appreciated. Most
people are not going to have an in-depth knowledge of this bill
and even members of this committee are still trying to figure out
an in-depth knowledge. What's important is that, as elected
representatives of the people, we know what people's concerns
are, we know what their worries are, we know what they want the
bill to do. Then we get the advice from the experts and try and
put that together to achieve the goals of the public.
I share a concern that
you've identified, that much of the bill could be circumvented by
changes in regulation. There's got to be a way that we can make
it more transparent. Health information privacy is something that
is obviously of key importance to people. We've got to make the
bill spell out more what people's rights are and what they can
expect, and take some of that stuff out of regulation. I think
that's a really key point.
The other question I
wanted to ask you is, I've been struck, going through this
process, how we're focused on what doctors and hospitals and
nurses and other health care practitioners and long-term-care
facilities do with our information. We have very high
expectations of them. But I hadn't thought often before how we
sign away all sorts of rights to information to insurance
companies to get our insurance, or to employers. We do it, yet we
hold one sector up to this high standard and over here we don't.
Now we're even passing needed laws to be even better in this
sector, but this other sector is out.
One of the things that's
been said to this committee is, "Rewrite this bill and talk about
the individual and their personal health information,
irrespective of what sector it is in and what the rules around
consent and disclosure would be." Could you tell us what you
think about that? Do you ever think about your health information
that's in an insurance company and expect that they give it the
same privacy as your doctor or not, or do you want to be able
to?
Mr Babb:
Insurance companies worry me. It has been in the back of my mind
for some time that they get access to records; polling companies
and so forth, the same. I have no real problem with OHIP as an
insurer having information under substantial safeguards. I worry
about, and something about this was mentioned, foreign-based
companies whose scruples may be better or worse than ours.
I don't know. Just in
general, it bothers me that insurance companies or some other
private agency can get information relative to health, and then
apply this to some other sphere. I'm not sure that I answered
your question adequately.
Ms
Lankin: No, it does. I think it's a genuine concern that
we all have and we don't know much about. The committee's got to
figure out whether we can deal with this here or not. Thank
you.
Mr Wood:
We've heard earlier that for the purposes of research, there are
some specialized areas of research that you can't do by getting
consent. So they either have to access the database without
consent to do some of this specialized research, or they can't do
it. For the purpose of your answer, consider that to be right. We
haven't concluded for sure it is, and you may not have concluded
that either. But suppose we reach the conclusion that that's the
case. If we're going to release it, it would be under the
supervision of an ethics committee, maybe under the supervision
of the privacy commissioner. So there'd be oversight as to what's
done, if it was going to be released. If you or we got to the
point where we either had to say you can do this specialized
research, and this information is released without consent under
supervision, or we're just going to say you can't do that kind of
research in Ontario, which side of that decision would you come
down on?
Mr Babb:
I think I would come down on the side of not doing the research
at all. I have a feeling, and I have to say this is just a
feeling, that much research that is done can be done by other
means than what you are describing, because if something is very
important to be done, then the researchers could design their
research to get around the constraint that you've brought up.
Mr Wood:
I think that's a very fair comment. The problem is, if we reach
the point where we conclude that there's some research that they
really can't do without access to those data-certainly your point
is right: a lot of it can be; no question about that. But if we
get to the point where there is some research that can't be, what
do you think we should do: say, "No, sorry, folks, you can't do
it," or, "Yes, under supervision, you can do it"?
Mr Babb: I'd say
don't do it. I just want to expand. One thing that bothers me is
the fact that research institutions, in medical research or
health administration or pharmacology etc, are really steeped in
and financed by a lot of private companies, in addition to
government money. In one instance I wanted a person to come to
Burlington from a health administration department in a
university. He wouldn't come because he was really compromised by
the fact that he was the point man for grants coming from private
companies. So he wouldn't compromise himself to do that. I don't
blame him. I just think it's a fact of life. I'm not absolutely
certain on that.
The
Chair: Thank you, Mr Babb. I appreciate you taking the
time to do what very few individuals do: come before us here to
today. We appreciate your input.
Mr Babb:
Thank you very much for having me.
1700
ONTARIO OCCUPATIONAL HEALTH NURSES
ASSOCIATION
The
Chair: Our next presentation will be from the Ontario
Occupational Health Nurses Association. Good afternoon and
welcome to the committee.
Mr Brian
Verrall: Thank you very much. My name is Brian Verrall.
I'm a former chair of the association and I'm now the executive
director. I'd like to thank you for having us here. I'd like to
commend everybody on the committee for, if nothing else, their
fortitude with the information that is passing through.
The Ontario Occupational
Health Nurses Association thanks the Ministry of Health for the
opportunity to present and respond to Bill 159. We, as an
organization, represent over 1,100 nurses in Ontario who are
responsible for occupational health and safety programs in varied
and numerous workplaces in both the public and private sectors.
The health and safety of our workers are paramount, and
confidentiality of medical information is critical.
In its previous
submissions to the Ministry of Health on July 31, 1996, February
1998 and October 2000, the Ontario Occupational Health Nurses
Association expressed its points of view regarding personal
health information legislation and made certain recommendations.
The association commends the Ministry of Health for taking into
consideration many of its recommendations.
A tenet of occupational
health nursing is confidentiality. In fact, in our scope of
practice and code of ethics it's stipulated, "It is understood
that the occupational health nurse protects the rights to privacy
of the client and confidentiality as required by law and
professional standards."
As health care
practitioners and health information custodians defined in the
Regulated Health Professions Act, occupational health nurses are
bound by rules of confidentiality. Medical information must be
properly disclosed, ie, informed consent or required by law.
Otherwise occupational health nurses can be disciplined by their
regulatory body, the Ontario College of Nurses, for breaching
confidentiality, thus resulting in possible loss of their licence
and, therefore, their livelihood.
The Ontario Occupational
Health Nurses Assocation, in its last correspondence to the
Ministry of Health in October 2000, was concerned with the
ministry's statement, "Personal health information related to an
individual collected for the purpose of labour negotiation or
employment of individuals" would not be covered under the privacy
legislation, and requested that the implications of this
statement be considered and amended. The Ontario Occupational
Health Nurses Association, in reviewing Bill 159, does not see an
amendment.
Under part II, subclauses
7(d)(i) through (iii), on page 13, the association notes that the
act does not apply to "personal health information relating to an
individual that is collected or created for the purpose of a
proceeding or anticipated proceeding relating to labour relations
... negotiations or anticipated negotiations relating to labour
relations affecting the individual or to the employment of the
individual, or meetings, consultations, discussions or
communications about labour relations or employment-related
matters in which the individual has an interest."
Occupational health
nurses are often privy to very personal and highly confidential
information that is voluntarily relayed by clients during routine
employment health assessments. Although we, as occupational
health nurses, do not elicit or expect to be provided with the
extent of information, we are nonetheless bound by strict rules
of confidentiality once that information is learned. It is not
uncommon for the occupational health nurse to be asked by their
employer for medical information. Some employers view access to
medical information, including the employment health assessment,
as an expectation of regular business practice.
A significant
professional and ethical struggle then ensues between the
employer and the occupational health nurse, who must by law
maintain the client's medical information in strictest
confidence. Termination of occupational health nurses' employment
for their refusal to release confidential medical information for
legitimate reasons has sadly occurred far too often.
It is our association's
view that information collected for employment purposes must be
protected by legislation in the employment setting. It appears
that the proposed legislation would permit disclosure of
information collected for purposes of employment and labour
relations. The Ontario Occupational Health Nurses Association
therefore cannot support Bill 159 in its entirety without
amendment, and it strongly urges the Ministry of Health to
consider and review the implications of part II, subclauses
7(d)(i) though (iii).
Legislation must protect
individuals' concerns and rights to privacy of health information
held by employers. Effective occupational health is predicated on
complete and reliable medical health histories where clients must
be able to trust that their medical records will be kept in
strict confidence. Without this assurance and trust, clients will
not be forthcoming about their true health status, which in turn may affect their
health and safety and that of their fellow workers in the
workplace.
The Department of Health
and Human Services in the US Congress passed regulations on
December 20, 2000, that protected the privacy of health records.
Provisions in the regulations included barring employers from
receiving "protected health information," protecting against
unauthorized use of medical records for employment purposes and
establishing a firewall between an employer's manager and health
care division. The Ontario Occupational Health Nurses Association
requests that the Ministry of Labour consider the adoption of
these items from the recent US regulations.
The proposed legislation
should encompass confidentiality of all health information,
including employment health screening programs. The Ontario
Occupational Health Nurses Association wishes to emphasize that
personal health information related to an individual collected
for employment and labour relations must not be omitted in Bill
159.
Thank you once again for
giving us the opportunity to comment and contribute to the
proposed legislation. The association welcomes continued dialogue
and would be happy to meet with representatives from the ministry
for further discussion regarding this issue. Thank you.
The
Chair: That leaves us with just over three minutes per
caucus for questions. We'll start with Ms Lankin.
Ms
Lankin: I appreciate the recommendations you're making.
One of the things the committee is grappling with is whether this
legislation should affect all health information or whether it
should affect the health sector. It's now written to affect the
health sector. Your petition is for us to look at protecting
health information irrespective of where it is.
I come from a labour
relations background, from a union negotiator position. I
recognize fully the points you're raising and I think these
standards that have been discussed in the past through the US
Congress are a very good place for us to look if the government
chooses to look at the broader issue.
I'm going to ask you for
a moment to suppose-we're still dealing with the health
sector-that we're unable to take on the job of looking at health
information irrespective of where it lay. When I saw the
provisions in the act, the exemptions around labour relations and
negotiations, the red flag went up and I asked what it's
about.
Think of a circumstance
where there's a grievance arbitration going on. Perhaps the issue
is abuse of sick time, and the records, not personal health
information in the nurses' records but the attendance records,
the reason for illnesses, those sorts of things, our personal
health information, are gathered by the employer. It's for the
purpose of a labour relations exercise. And the third one I think
of is an employee relations committee circumstance.
When you go to the table
as a union and you're attempting to negotiate on behalf of your
members an increase in benefit plans and/or particular
protections or changes in the health and safety provisions in the
workplace, you want to look to incident rates of certain things.
You want to gather data on how many people have had back
accidents. You want to be able to talk about that at the table.
In a way, it means looking at absentee files, looking at workers'
compensation files; it doesn't mean talking about the individual
at the table.
Is there a legitimate
role for exempting some of that information being collected and
used solely for the purposes of negotiations or employee
relations or labour relations meetings?
Mr
Verrall: Going back to Mr Wood's question that he's
asked three or four people today about doing without research, I
think the information can be used, but if we put it in a scenario
about the honourable member Frances Lankin and her attendance in
the House, she should be dismissed for irregular attendance and
not necessarily for a sickness absence. As soon as management
says to the employee, "We're going to reprimand you because
you're off sick too much," it puts a whole new sickness attitude
into the frame of the individual.
1710
Ms
Lankin: That may have been a bad example. Think of the
negotiations. I'm talking about dismissal for sickness, but think
of the negotiations around benefit plans or whatever. I'm just
trying to find whether there are some circumstances where the
collection of this information is valid to both parties in a
workplace to have access to discuss.
Mr
Verrall: It's certainly very valid. I think it's very
useful. In my other life I'm also a researcher and I can
understand the need for this information, but I can also
understand the need for confidentiality. That information can be
used without identifying the individual. It's done every day and
it can continue to be so.
Mr Wood:
I was actually going to spare you the research question but since
you have had a bit of experience in the field and you heard the
question I asked earlier-
Mr
Verrall: I'd like you to repeat it, though.
Mr Wood:
If we reach the conclusion that there are certain kinds of
research that have to be done without consent, because of a small
sample or for whatever reason, we are going to have to decide
either that we're going to authorize that by law so the research
can be done, or we're going to have to decide that it can't be
done in Ontario and say, "Sorry folks, that kind of research
can't be done in Ontario." If we reach that point, do you think
we should come down on the side of permitting the research, with
proper supervision and review, or do you think we should say,
"No, that research can't be done in Ontario"?
Mr
Verrall: In my opinion, I think the research should be
done provided there are safeguards in place; that there is an
ethics committee which would eliminate taking body samples or
whatever, to do research without consent; and that there is a
committee involved to make sure that no one can be identified.
This type of research is being done every day, and we can find
out who will benefit
from whatever we're looking at without identifying who that
person is. So I think, yes, we have to do it.
Mr Wood:
What do you think about the necessity of oversight by some public
official like the Information and Privacy Commissioner, for
example? Do you think that's needed for the ethics
committees?
Mr
Verrall: I think ethics committees have to be made up of
a good cross-section. We take it back to the business world where
you have a board of directors; many times people will have an
outside or a public member. I think the more people we get on an
ethics committee from various organizations and walks of life,
the better that ethics committee will be.
Mr Wood:
What do you think about some public official having the final
sign-off on research?
Mr
Verrall: Absolutely not. It has to be a committee
decision.
Mr Wood:
You don't see a role, for example, for the Information and
Privacy Commissioner in that?
Mr
Verrall: I do not. I think it must be a commission. I
think one person, depending on how he or she feels that day,
could make the wrong decision.
Mr Wood:
My last comment, which is not a question, actually, is, you make
some interesting points here that may or may not be dealt with in
this particular bill, but if they aren't, we would invite you to
stay tuned and continue to make your submissions on those points,
which are important points to be considered regardless of whether
or not we're able to address them.
Mr
Verrall: I can assure you we will be there.
Mrs
McLeod: I was interested in your reference to the
Department of Health and Human Services of the US Congress and
their resolution. Do you know how they would define "protected
health information" in terms of information that's barred from
employers receiving it?
Mr
Verrall: I can't specify that. I found this on the Web
just recently and I threw it in there because I know it is
legislation that has just been enacted. I've also been chair of
the American association, and I realize it's not Canadian to be
American, but I think there's certainly a lot of things we can
glean from what they've done. You would certainly have to look at
the political scientists to interpret any bill from either side
of the border.
Mrs
McLeod: Have you had a chance to look at the federal
legislation as it applies to private sectors?
Mr
Verrall: No, I haven't. We deal basically with the
Ministry of Labour in our job and this is a periphery thing once
we get into medical confidentiality. I'm not aware of the
labour.
Mrs
McLeod: I'd be really interested, if you have an
opportunity to look at it at some point, as to whether or not it
would in any way deal with the situation of employers having
access inappropriately to confidential health information.
Obviously one of the concerns we are hearing repeatedly is the
concern that the legislation before us today doesn't deal with
employers or with the insurance situation. Do you think there is
some health information that should be denied to employers, or to
insurers for that matter, in such a way that, even with consent,
that information cannot be required as a condition of
employment?
Mr
Verrall: I believe there is information that, if given
to the employer-and the employer, being an individual, is not
capable of interpreting that information-can be detrimental both
to the company and to the employee.
Mrs
McLeod: How do we protect the employee, the potential
employee, given the fact that all of the efforts of the
legislation are to deal with the issue of access to information
without consent? But the employee can be in a vulnerable position
where they feel as though they have no choice but to give
consent. Do we need to protect that situation in our legislation
as well?
Mr
Verrall: I think precedent has been set with the
Ministry of Labour in their act respecting silica asbestos and
some of the other designated substances. At one time, before the
last two or three governments, you were required to have a
medical if you worked underground in the mines. That request was
for a pulmonary function test and a chest X-ray. That was a
requirement that you must have in order to maintain your ticket,
so to speak. The information was between you and a physician, and
the physician was requested and required by law to state that you
were fit to work, period. So the message would go, "The
honourable member Lyn McLeod is fit to sit in Parliament,"
period. That's it. You could have all kinds of physical and
mental problems, but as long as it doesn't relate to your ability
to do the job as outlined, then it's really superfluous
information.
Mrs
McLeod: We don't have that protection in Ontario law
now.
Mr
Verrall: The Occupational Health and Safety Act does
state that if you're working with some of these chemicals, you do
require a fit-to-work statement from a physician, so it would
come back that the individual is fit to work with asbestos
silica, isocyanates, lead, many of the designated substances.
The
Chair: Thank you very much for coming before us here
today.
ROYAL COLLEGE OF DENTAL SURGEONS OF
ONTARIO
The
Chair: Our final presentation of the day is the Royal
College of Dental Surgeons of Ontario. Good afternoon and welcome
to the committee.
Mr Irwin
Fefergrad: My name is Irwin Fefergrad. I am the
registrar of the Royal College of Dental Surgeons of Ontario. I'm
joined by Peggi Mace, who is the senior manager of
communications. I'm grateful for the opportunity to speak with
you and perhaps help you wade through some of the difficult
portions of this legislation.
I thought it might be
important to outline to you who we are and what is a college. We
are a college that has been in existence for 133 years. As a
college, our responsibility is essentially to regulate the
profession of dentistry. We're not an association, which means we
do not represent the dentists. We essentially are here to protect
the public interest.
The Regulated Health Professions Act in fact empowers us to do
so, and that is a fundamental, basic requirement and
responsibility that we have to the public of Ontario, to protect
their interests as a college.
We're not an educational
facility. We don't create medical records or offer any health
care treatment. Essentially, what we are is a body that's been
empowered by the Legislature to have delegated powers and
delegated authorities. The Legislature has decided that it wishes
us, the college, to carry out functions that might otherwise be
carried out perhaps by the state, perhaps by the police. But in
its wisdom, the Legislature has said, "We are content to delegate
the responsibility that we might otherwise have to you as a
college."
I'd like to outline for
you some of the items that we deal with with respect to
protecting the public interest so that you have a concept of what
colleges do, and particularly our college.
The regulations provide
that it is professional misconduct if there are billing
falsifications, billing for services not rendered, offences of a
sexual nature to a patient, rendering unnecessary services,
prescribing drugs for improper purposes, breaching
confidentiality of a patient, abusing a patient, failing to
comply with an order of the college or of a court, charging
excessive fees, false advertising, rendering services which are
considered to be below the standard of practice, and breaching
other laws relevant to the provision of dental care to the
public. That's just some examples. So you can essentially see
that the scope of authority which the Legislature has given to
the college as a self-regulator is quite vast and quite expansive
in order to carry out our mandate of protecting the public
interest.
In fact, the Legislature
has gone further. The Legislature has said that in order for us
to continue to protect the public interest, we must also have
certain powers and authority to fulfill our mandate.
Consequently, the Regulated Health Professions Act gives us that
power, and these powers include the power of subpoena, the power
to investigate, the power to issue a warrant, essentially, and
many investigative tools that one might think an enforcement
agency might have.
1720
But it's more than that.
In addition to the investigative powers, the Legislature has set
up, through self-regulation, a tribunal system. Self-regulation
means that our dentists who have breached the statute appear
before a court: a self-regulated court, but a court nonetheless.
That court has been given huge powers and authority to discipline
our members, and by our members, I mean our dentists. They
include a very court-like type of authority and powers such as
suspending a certificate to practice; revoking a certificate;
publication of the name of the dentist and results of what
transpired during the hearing-in fact, the hearings are open and
available to the public, just like a court, and there are full
transcripts available; fines up to $35,000 under the statute,
payable to the province of Ontario, Minister of Finance; costs;
remedial courses; supervision, which are essentially probationary
types of orders; terms and conditions on a member's
certificate-you can't treat children for a period of time until
you satisfy probationary terms, for example; and, in the case of
sexual abuse, requiring the dentist to, by order, fund a therapy
program for the victim.
All of these types of
remedies are determined by a panel, by a tribunal, following a
formal hearing. As you can see, the structure of the statute
gives the college the self-regulatory authority not only to
investigate, but also to discipline. That's what self-regulation
is really all about. As you can see, the remedies are very, very
serious. The powers to investigate are very, very serious.
Normally, this would not be delegated to a self-regulatory body,
but it is in the case of dentists and 20 other health care
colleges.
The current statute, the
Regulated Health Professions Act, has been around for some seven
years or so and is currently under review. The Minister of Health
has sought advice-the previous and current ministers-from HPRAC,
the advisory council. Essentially, what HPRAC is doing is
receiving submissions. It is receiving submissions from
stakeholders. It has met for numerous hours with colleges. It has
met with different associations. What it is asking is, has
self-regulation worked? How can it be improved? What are the ways
that, in the interest of protecting the public of Ontario, the
statute can be addressed? Given our experience of the last seven
years, what are some of the changes that could be brought in?
It seems to me and to our
college that because we're in a timely process of reviewing
self-regulation and the powers that the Legislature has given, it
makes a lot of sense that the purposes-which we support,
frankly-that are set out in PHIPA, very important principles, be
folded into one consistent statute, especially when that statute
now is under review. I don't come before you advocating for any
group. I'm not here speaking for the dentists. I'm not here
speaking for any self-interest group. I'm here speaking for the
public of Ontario. What worries me as the chief regulator for the
dentists, for the public of Ontario, is that there are
conflicting sections, good as it is intended, in the PHIPA
legislation which will interrupt and will harm the process of
self-regulation. What will happen is that the ability of colleges
which have been given the authority to self-regulate-and in our
case, it's been 133 years-will be impeded. The public will not be
protected.
I'd like to give you some
examples. I know you're dealing with a very, very difficult
concept. I know you're trying to essentially service many, many
areas in dealing with the legislation, but I'm going to suggest
to you that you ought to consider taking the principles that you
have in PHIPA and addressing that in the context of
self-regulation, because otherwise there will be some problems.
Let me give you two or three examples that might assist by way of
illustration.
PHIPA proposes that there
will be provisions allowing amendments to health records. Our
members, our dentists, by and large, are very law-abiding.
We're not speaking of those. We're speaking of those who come
before us in our process. It's not unusual, in those cases that
come before us, to have a billing record altered. It may be, for
example, that a patient and a dentist wish to collude. "Hey, Doc,
I'm going to be laid off or my job is terminated next week. Can
you backdate all the services you've got to perform for me and my
family so I'm covered under the policy while I'm still working?"
And the doctor says, "Sure, I'll do that."
The college gets wind of
it. The insurance company typically would do some investigation
and would inform the registrar-me, in this case. I'm faced with
this dilemma: essentially the primary pieces of evidence we have,
in a very formal legal process that we have, are the charts and
records of the practitioner. That's essential for us. Under
PHIPA, there is an ability for the dentist to say, "Gee, I made a
mistake. Sorry, I'd like to amend that," or for the patient to
say, "I agree with him. Yes, there is a mistake."
I'll give you a few other
examples that I think could happen. These are not outrageous
examples.
What I worry about is the
case of a dentist who has breached a sacred trust-being able to
bill an insurance company, being able to get paid from an
insurance company, is a fundamental trust, and we're here as a
college to ensure that that trust in fact continues. Our job is
to stop that activity, for a bunch of reasons: to say to the
public out there, "We're here to protect you"; to say that we
don't condone any activity that smacks of any kind of fraud. But
how do we do that in the face of an ability of the primary piece
of evidence to be presented to a committee to say, "We erred.
There was a mistake"? The burden of proof then becomes very
difficult for us to discharge. As I am sure you are all aware,
especially the lawyers around the table, the Divisional Court and
Court of Appeal have said, "Because self-regulation challenges
the right of somebody to earn a livelihood, the burden of proof
is very, very close to the criminal law burden of proof-beyond
reasonable doubt." We will have trouble to establish and
discharge that burden.
I worry about being able
to do that. I also worry about the consequences. It means that
the ability to collude or the ability to use a very important
vehicle that should be in legislation-allowing patients to have
access to records, allowing patients to change records in
circumstances that warrant it-will in fact frustrate
self-regulation if the provisions aren't put together and aren't
made consistent in the Regulated Health Professions Act.
There are lots of other
examples that I could get into. I'd like to take it a step
further and look at the situation where the custodian decides,
for whatever reason under the statute, that the custodian won't
amend. There are provisions to go to the commissioner. I can tell
you that there are also-and there have been discussions in the
health care sector-numerous ways to drive a truck through the
PHIPA legislation so that people who are errant, people who need
to come and be made accountable for their actions-dentists, in
our case-will be able to parade through Divisional Court, will be
able to take the procedures you've got here that are intended to
give to Ontarians what they really should have, but yet frustrate
a discipline process. So there is that conundrum.
I want to suggest to you
that if HPRAC and this committee were able to meet and talk and
able to dialogue-we'd even help you-there are ways to draft,
through the RHPA, the appropriate protection so that
self-regulation isn't jeopardized and that the purposes of PHIPA
will be incorporated. It won't be in PHIPA. It will be in other
legislation that Legislatures and numerous governments have
decided makes sense and has been in place for many years.
1730
One or two other examples
to show you why I'm a little nervous about PHIPA being in
isolation of the RHPA, the Regulated Health Professions Act.
One of the provisions is
that before one can use or disclose personal health information,
a health information custodian-in our case that's the college,
some staff person-shall take steps that are reasonable to ensure
that the information is "accurate, complete and not misleading."
That is not our job. Ladies and gentlemen, we are
investigators.
If you take us outside of
the RHPA-let's look at the criminal justice system-can you
imagine if you gave the police double and triple responsibility,
if you said to the police, "Your job is not only to investigate,
not only to present as objectively as you can the fruits of your
investigation, but you also must make a determination whether
what you have gleaned out of the records is accurate"? My God,
just think of the potential abuses. Think of the arguments around
potential bias. The RHPA is a brilliant piece of legislation. It
is very specific in saying what the particular job descriptions
are. Our job is not to do that. That's the job that the
Legislature for many years has given to a tribunal, a trier of
fact.
For example, how is an
investigator supposed to determine if there is forgery on a bill?
How is an investigator supposed to determine whether a particular
radiograph applies to one patient or another? That's not the job
of the investigator. The job of the investigator is to receive
the complaint and, as objectively as possible, collect all the
information and present it to a tribunal, to a statutory
committee that the Legislature has set up. It is that committee's
responsibility, that committee's duty under the act, to make the
judicial determination. That's what the Legislature has set
up.
What I worry about is
that I can see a situation where we receive information of
perhaps falsifying a record, of perhaps a dentist forging a
patient's signature on a consent. Who knows? Then we're into a
whole debate as to, is it a forgery or isn't it? I come back to
the original principles. Why am I here? I am here to protect the
public interest of Ontario. How does that accomplish that? I want
to suggest to you that it doesn't. In fact, with the best of
intentions, it will frustrate that, and I worry about that.
It's not only the Legislature; it's
not only the statute. Courts have been on the colleges' backs now
for years. Those of you who have read decisions will know the
courts have said, "Be very careful how you investigate, because
if you screw up on your investigation by demonstrating some bias,
then we will throw out the fruits of that investigation, whatever
it is all about." So the very section, subsection 24(2) of PHIPA,
that establishes the responsibility of the custodian to verify
accuracy, to verify complete information and non-misleading
information, flies in the face of what the Legislature has set
up-it's contradictory-and what the courts have said. I would
imagine that many defence lawyers would love to leave this
section in, because it presents defences that now don't exist,
and I worry about that.
I have a note here that
says "Wrap up." I guess I'd better get there.
I want to take some
questions from you. I'll stop there. There are many other
examples.
I just want to conclude
by saying you have an HPRAC, a minister's advisory council, that
has been set up and set up for the purposes of advising the
minister as to how to make the RHPA even better. By the way, the
RHPA, as some of you around this table will know better than I
do, took 10 years to come into actual enactment.
Ms
Lankin: And eight Ministers of Health.
Mr
Fefergrad: Do I hear a former Minister of Health over
there?
It was a very detailed
study and a brilliant piece of legislation that came in, and we
now have several years of experience with it and we're analyzing
it.
My submission in
conclusion is, let HPRAC do its work. This legislation is
important. The principles are important. Let's try to work
together and try to bring those principles into the RHPA.
The
Chair: Thank you very much. We've got just over four
minutes per caucus. We'll start with the government.
Mr Wood:
This is going to be a comment, not so much a question, or I guess
an invitation. I think it might be helpful, at least to me and
perhaps to the committee as a whole, if you were to consider that
we might in fact have PHIPA override the RHPA. Let's assume that
we're going to reject your recommendation 2 and that we are going
to do that.
Mr
Fefergrad: It wouldn't be first time I've been rejected;
it's all right.
Mr Wood:
It's happened to me lots of times, so don't worry. If we did
that, what sort of alterations would we have to make to Bill 159
or whatever act we ultimately put through in order to accommodate
some of the concerns you've raised? You may not want to respond
to that now. You may want to think about that and just give us a
memo which could be put into the ministry and to the committee,
or you may want to offer some comment now; I don't know.
Mr
Fefergrad: I can give you a memo and I can tell you that
this college is committed to work with whatever group is
necessary to accomplish the ends of PHIPA. I have to tell you,
the lawyer part of me says, in reading PHIPA, it can't be done.
You cannot carve out pieces and amend PHIPA and make it work when
you've got the RHPA.
I can tell you that you
will be faced with a situation that will have Walkerton pale by
comparison. You've got not only our college; you've got every
person out in Ontario who depends on and who trusts
self-regulation. I think the way to accomplish the ends of PHIPA
is really to take a statute that we have experience with and look
at it and try to accomplish within that statute what the goals
and purposes are to PHIPA. I don't believe it can be done through
PHIPA, although I'm very happy to look at the legislation again
and try to work with it.
We tried. The federation,
as you may know, sat around the table. It's very difficult to
take one piece of legislation that is geared for a specific
purpose and make it overriding to another piece of legislation
that is intended to protect the public of Ontario, and then say,
"How can we remake PHIPA? How can we take in a hem here and pull
the sleeve in over there and tighten the waistline in over here?
Will that work?" Ontarians deserve better than patchwork. Don't
do it.
Mr
O'Toole: I just had a quick question. This may be right
off the wall, but it's the last part of the day. In all cases
where self-regulation seems to have primacy, and I respect that
self-regulatory framework, where does the interest of the
consumer, in this case the patient, come in and their right to
appeal or have access?
Mr
Fefergrad: That's not an off-the-wall question; that is
actually what we are all about. A patient who complains is a
party to our proceeding. That's what the structure of the act is.
When a patient writes a letter, calls the registrar, sends an
e-mail, sends a fax, writes on the back of an envelope, has an
issue-and if English isn't the first language, we'll get some
help-our duty, our responsibility, is to investigate each and
every complaint.
We have no authority, and
that's why the act is so good, as a college to say, "We don't
like this complaint," or, "We don't think this one makes any
sense." Our job is to do an investigation, keep the complainant
informed and bring it to the statutory committee. I have no
authority whatsoever to take a complaint and tear it up. The
complainant is not only involved in the process, but in the event
the complainant is not satisfied with the decision of the
complaints committee, the complainant has a right of review to
the Health Professions Appeal and Review Board and is a party to
that proceeding.
I urge you again: the act
is a very cleverly thought-out statute. It took a lot of courage
to come into being and it's working. Your question is not at all
off the wall. Our responsibility is to see to it that
complainants are in fact kept informed of the complaints process,
and they are. If we don't do our job, we should be taken down to
account by HPRAC.
Mr
O'Toole: Who watches the watcher? Isn't that the
original question?
Mrs
McLeod: I don't want to oversimplify just because it's
the end of the day. First of all, I'm convinced. We've heard it from I think
almost all, not 23 of them yet, but a lot of the regulatory
colleges.
Ms
Lankin: The rest are coming.
Mr
Fefergrad: We all have a share.
Mrs
McLeod: I don't need any more convincing we've got to
deal with a problem of the lack of consistency between-
Mr
Fefergrad: You know what's strange, at the risk of
interrupting you? We haven't conspired; we've come here
independently.
Mrs
McLeod: If you haven't, please do.
Mr
Fefergrad: And imagine if we had.
1740
Mrs
McLeod: I think where you've left us with this
presentation is that the HPRAC legislation is good legislation,
that we do need health privacy legislation nonetheless, and that
we need to make sure that the two things are consistent and that
it's a very difficult task to do.
Mr
Fefergrad: Yes.
Mrs
McLeod: Let me take a shot at it, without attempting to
oversimplify. We take the colleges out as health information
custodians. At this point, I believe-I may be persuaded
otherwise-that health privacy legislation should have primacy and
that there should be exclusions written into the health privacy
legislation where other acts are to supersede it. So we take the
colleges out as health information custodians, and then we write
in a specific exclusion under the health privacy legislation to
recognize the primacy of HPRAC in terms of the regulatory
responsibilities of the colleges. Why wouldn't that deal with the
problem?
Mr
Fefergrad: That might. It's late for me too, actually.
Could I give some thought to it and perhaps reduce some thinking
to a memo? That might work.
Mrs
McLeod: Thank you. Then I guess my second question, if
I'm not erring on the side of oversimplifying everything-
Mr
Fefergrad: No, it's great for me. I understand it.
Mrs
McLeod: You've said we need health privacy legislation.
What gaps need to be addressed by having health privacy
legislation that goes beyond what the regulated health
professionals are putting into practice now?
Mr
Fefergrad: That's a big one. Do you mean in terms of our
mandate as a college?
Mrs
McLeod: No. I think the regulated professions under
HPRAC are doing a good job, and the way in which the health
professions are dealing with their responsibilities is-the review
is going to identify some areas where there need to be
improvement etc, but by and large you don't hear huge numbers of
complaints. So where are the gaps, in your view, that lead you to
say that we need to have consistent standards and rules? Is it
for the various custodians, those who are recipients of health
care information, that have dealings with individuals in health
care settings and aren't one of the regulated health
professionals or health providers? Is that one of the places
where we need to get consistency?
Mr
Fefergrad: It's one of the areas; it's not the only one.
That's actually a very complex question. I'm not ducking it, but
I'd love to have some time to think about it and not just wing
it. Will that be all right?
Mrs
McLeod: Sure, I appreciate that. The reason I pose it is
not in any sort of rhetorical way. It's because I think we're all
really struggling with the sheer complexity of this
legislation.
There is a default
position, and the default position is to simply stay with HPRAC
Ontario and the federal legislation in terms of the commercial
sector takes over, and what else do we need? It's an issue that
we're really struggling with right now: what do we have to do to
get really good health privacy legislation in Ontario, and what
is it we're trying to achieve in doing that?
Mr
Fefergrad: With your permission, it's a very complex
question. I wouldn't mind taking some time and reducing it to a
memo, if that's agreeable to the Chair.
Mrs
McLeod: I would appreciate that very much. Thank
you.
Mr
Fefergrad: I'll do that, then.
The
Chair: We'll move now to the NDP. Ms Lankin.
Ms
Lankin: In 1991 and 1992, I used to lose a lot of sleep
to nightmares about the RHPA, whether it was, like,
monster-controlled acts or scary scopes of practice or whatever.
I'm having flashbacks. In these last couple of days, it's sort of
like, oh, God, here we go again.
I think Mrs McLeod summed
up where I'm getting to my thinking. As a general principle, I
believe that whatever privacy information legislation we end up
with needs to have supremacy. There should not be whole acts that
are exempted and given primacy over it. But where there are
absolute conflicts-and that's what you keep saying: where there
are conflicts, we can't live with that-identify them, and we can
amend this legislation to give RHPA primacy in that area, as
opposed to exempting the whole regime.
That may not be
satisfactory, but I think it's what Mr Wood was getting at and
it's what Mrs McLeod has asked you for. We've asked, so you know,
a number of the colleges to put their minds to that, so there
perhaps is a coordinated, dare I say colluded, response that
might come forth.
Second, you should know
we've also asked that HPRAC be contacted and that HPRAC not delay
in any way the review they're doing. But this is a significant
issue, and perhaps they should be also turning their mind to this
and advising the committee. The ministry has also, if this sets
your mind at rest, testified before us-just a five-minute
interlude today-in response to a number of the colleges'
submissions that certainly none of the fears you raise are their
intent. So I think there's a willingness to work through
this.
The questions is how we
best do it. What you've been asked for would be very helpful to
the committee, and once we determine our recommendation back to
the ministry about the scope of the legislation and the direction
we want to go, it would facilitate our committee's suggestions to
the ministry about how they handle what is obviously an issue that's got to be
dealt with. I think we're all convinced of that.
Mr
Fefergrad: I'm delighted to take a shot at it if it
helps you.
Ms
Lankin: I appreciate that.
The
Chair: Thank you very much. We appreciate your taking
the time to come before us this afternoon.
There being nothing else
before the committee, we stand adjourned until 9 o'clock tomorrow
morning.
