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
Sudbury and District
Medical Society
Dr Rayudu Koka
Dr Chris McKibbon
Dr Pierre Bonin
Ms Patricia
Hatala
Intercilium
Dr Samuel Berger
Ms Mavis
Lipman
Survivors of Medical
Abuse
Ms Josie MacPherson
Ontario Association of
Optometrists
Dr Christopher Nicol
Ombudsman
Ontario
Mr Clare Lewis
Information and
Privacy Commissioner/Ontario
Dr Ann Cavoukian
Insurance Bureau of
Canada
Mr Mark Yakabuski
Mr George
Henry
Canadian Civil
Liberties Association
Mr Stephen McCammon
Toronto Association
for Community Living; Ontario Association for Community Living;
Ontario Agencies Supporting Individuals with Special
Needs
Mr Gordon Kyle
Mr Bill Barber
Mr David
Prichard
Ontario HIV Treatment
Network
Ms Patricia Balogh
Mr Ed McDonnell
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 Raminder Gill (Bramalea-Gore-Malton-Springdale PC)
Mr Bert Johnson (Perth-Middlesex PC)
Ms Frances Lankin (Beaches-East York ND)
Mr Gerry Martiniuk (Cambridge PC)
Mrs Lyn McLeod (Thunder Bay-Atikokan L)
Mrs Sandra Pupatello (Windsor West / -Ouest L)
Mr Bob Wood (London West / -Ouest PC)
Clerk / Greffière
Ms Anne Stokes
Staff /Personnel
Mr Andrew McNaught, research officer,
Research and Information Services
The committee met at 0900 in room 151.
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
continue our hearings on Bill 159, An Act respecting personal
health information and related matters. We're very pleased this
morning to be reaching out to the far reaches of the
province.
Ms Frances Lankin
(Beaches-East York): Sudbury's not that far.
The Chair:
It gets farther than that, though, in the next group. We're very
pleased to have some deputations from different sites all across
Ontario. I would say to the committee members there is a bit of a
time lag. As we each speak, there's a bit of a lag getting that
message out to the other end, so I would ask you to respect that
when we're into the question-and-answer period. Just allow a
little bit of time after your question or else we'll be talking
over each other.
SUDBURY AND DISTRICT MEDICAL SOCIETY
The Chair:
With that, we'd like to welcome to the hearings the Sudbury and
District Medical Society. Good morning. The floor is yours for
the next 20 minutes.
Dr Rayudu
Koka: Thank you, Mr Chairman and members of the standing
committee. We are extremely pleased that you gave us the
opportunity to be able to express our concerns and our views on
this very important bill. My name is Rayudu Koka. I am the
president of the Sudbury and District Medical Society. I have
been a practising psychiatrist in this community for the last 15
years. I have with me two colleagues: Dr Pierre Bonin, who is the
vice-president of our medical society and a family physician; I
also have, to my right, Dr Chris McKibbon, who is a
rheumatologist and has also been active in our society as past
president and also as an OMA board member.
With this introduction, I
would like to let my colleague, Dr McKibbon, present the
information and our issues, and then we'll go on from there.
Dr Chris
McKibbon: Mr Chairman, honourable members, fellow
citizens, I want to thank you for the opportunity to respond to
Bill 159, the Personal Health Information Privacy Act. I'm Dr
Chris McKibbon and I'm a practising physician specializing in the
treatment of people who are struggling with arthritis and
rheumatism. Like you, I'm a representative. I'm elected by
physicians in northeastern Ontario to represent them on the board
of directors of the Ontario Medical Association.
I'd like to begin by saying
something surprising, even provocative, and that is that we need
legislation dealing with personal health information privacy. We
live in an age when information is constantly being collected.
Marketing agencies are gathering information about our personal
preferences, our tastes and our habits. Financial institutions
are maintaining records about our economic transactions.
Political parties of all persuasions are tracking us
relentlessly. Statisticians are gathering data as squirrels
gather nuts. Never has personal privacy been under such
unrelenting attack.
Never before have we had the
capacity to know so much, particularly in medicine. We stand just
inside the door of unravelling the genetic code, with all of the
possibilities and pitfalls that entails. We're well along the
road of peering into the human body using sophisticated
diagnostic imaging and even more extensive laboratory technology.
We have increasing capacity to store, to link and to share
information. As this capability increases, we need legislative
boundaries to protect personal privacy.
The practice of medicine is
rooted in trust, in a very special relationship between a
physician and a patient in the confidence that you can share with
your physician your darkest fears, your deepest secrets, your
worst indiscretions, confident that when personally, physically
or emotionally vulnerable, you will be neither violated nor
betrayed. Bill 159 places this special relationship at risk, and
it does so in many different ways.
Firstly, it does so by
allowing unfettered access to identifiable patient data. I can't
imagine any situation in which governmental or bureaucratic needs
justify direct access to a patient's chart. Planning requirements
are predicated on an appreciation of the status of populations,
not individual persons.
Where there are questions of fraud or quality of care at issue,
access to information necessary to look into those things is
obtainable by means that are already available: a court-ordered
warrant or an audit conducted under the oversight of a
profession's regulatory body.
Secondly, Bill 159
excessively expands the list of those who are entitled to access
to personal health information and fails to qualitatively
differentiate between them. Surely we can develop legislation
which recognizes the differences in the information needs of
those who intend direct benefit to patient care and those whose
needs for health information are not so specifically and
personally directed. Clearly, the needs of a podiatrist making
footwear for one of my arthritic patients are different from the
needs of one of my psychiatric colleagues treating the same
patient's depression, and the needs of a health planner are
different yet still. By not clearly differentiating among those
who might potentially have access to sensitive information, the
legislation undermines the trust and confidence that's
fundamental to the physician-patient relationship.
Finally, I'm concerned about
the bill's direction with regard to regulation of how patient
information will be coded or stored. While it is true that
development needs to proceed on a core data set and a common
strategy that allows for sharing essential information using new
developments in information technology, the bill does not seem to
set the limits necessary so as to permit the acquisition and
transmission of only that data which is relevant to the
particular patient's care at a particular time. There does not
seem to be a strategy for the patient to identify and protect his
or her record from transmission or adequate encouragement for
clinicians or so-called custodians to exercise judgment in
sharing some, but not all, of the information that may have been
disclosed or discovered within the context of that privileged
relationship.
This committee will know that
the people of the province want less government, not more. My
patients and my colleagues are genuinely concerned about what
they perceive as both a real and potential intrusion into one of
the most privileged and private relationships. They understand,
too, that an efficient and effective health care system needs
legislation which facilitates communication and coordinates care.
But they demand that the balance favours the protection of their
privacy.
Governments should be
congratulated for having the courage to ask tough questions about
difficult issues. I would return to the statement with which I
began: we need legislation dealing with personal health
information privacy. Unfortunately, while it begins to address
the right questions and shows courage in doing so, it doesn't
give us the answers that we need to move forward. We need to
recommit ourselves to working collaboratively toward the
development of new personal health information legislation which
will protect our privacy, deserve our patient's confidence and
enhance our ability to deliver care.
I want to thank you for the
opportunity to speak to you today. I'd certainly welcome the
chance to respond to any questions after my colleagues have had a
chance to present.
Dr Koka: Mr
Chairman, now I would like to request-sorry, can you hear us?
The Chair:
Yes, we can.
Dr Koka: I
would like to now request my friend, Pierre Bonin, to do his
presentation and then we'll take it after.
Dr Pierre
Bonin: I'm Dr Pierre Bonin, a family physician and also
vice-president of the Sudbury and District Medical Society.
First, I'd like to respectfully thank the members of the
committee for granting me the opportunity to speak on this
delicate subject. I don't pretend to be as eloquent a speaker as
our president, Dr Schumacher. I can only offer you my thoughts
and echo the OMA's position.
This is going to sound
cliché, but I'm not a health information custodian; I'm
simply a doctor from northern Ontario. I appreciate the changing
environment we practise in and the need to share electronic
information, and also that changes need to be made to the
legislation. But this bill goes too far.
We, as citizens, need privacy
legislation. Bill 159's intent is good, but it is not pointed
enough. We need to define limits on what information the
government can obtain. We need to be very sensitive to the
possibility of abuse. This law is structured in such a way that
fundamentally changes the trust relationship between the patient
and his doctor. This is the cornerstone to any successful
patient-doctor relationship. At the end of the day, the patient
must trust his doctor, rather than wonder which of a long list of
custodians may use his private information and for what purpose.
People disclose things to me that are very sensitive because they
know that it affects both their mental and physical health.
Physicians have an interest in that information and a duty to
protect their patients' confidentiality.
I'm not clear what is deigned
with this notion of health information custodian. I don't believe
for a minute that the Ministry of Health requires identifiable
patient information for planning and management purposes. I think
that it is dangerous to allow government to be in a position
where it can direct, ie, force, the delivery of sensitive patient
information to government. Any release of identifiable patient
information is an affront to the trust patients place in their
physicians.
0910
Although I think physicians
would generally agree that patients should have the right to know
how their information will be used and to consent to uses beyond
the direct provision of health care services, Bill 159 raises
some practical questions.
Bill 159 adopts the approach
to informed consent that is found in Ontario's Health Care
Consent Act. On the surface that seems reasonable, but as a
practising physician I'm not sure how I'm supposed to know, never
mind explain, all the possible uses to which the information may ever be put. There
is a key difference between consent to treatment-what I know
about the risks and benefits of the medication that I'm
recommending-and being responsible to describe or justify the
dozens or hundreds of legitimate disclosures that Bill 159 would
allow. It's not reasonable to require me, as a physician, to
anticipate what might happen to the information after it leaves
my control. If the government wants physicians to have this role,
then physicians should be able to control what happens to the
information.
If this legislation is
passed, I fear that patients will ultimately distrust their
doctors. I can't see Mr Jones disclosing that he has abused drugs
and that's why he has cellulitis on his arm if he knows that
disclosing this to me may lead to hundreds of "legitimate"
disclosures to other health information custodians for purposes
that are out of my control but, most important and lest we
forget, out of the patient's control.
I echo Dr Schumacher's
sentiment that this bill allows sweeping intrusion by the
government into its citizens' personal lives. We, as physicians,
cannot and do not support Bill 159 in the form that it is before
us.
Dr Koka:
Thank you, Pierre. Mr Chairman, I'm going to make some comments
about what my colleagues have already mentioned. I am a
practising psychiatrist. We feel that, at least at present, we
have a very good privacy act in position already. When my
patients come, the first thing they ask is, "Doctor, tell me,
where is this information going to go? Who will have access?" Now
at least I tell them, "Nobody else without your written consent
with the details." The judge is the only one who can summon the
records, nobody else, whereas in this act, if it goes through, we
don't know who will be accessing this information. I cannot
explain to the patient, "Look, the whole world will have the
information, but I have no control over it."
In that situation, how can
you expect the patient who has been traumatized-and 30%, say, of
our female patients with depression have a history of sexual
trauma-to tell me? I have had a 60-year-old, for the first time
ever in her whole lifetime, disclosing that information to me.
With this Bill 159, if it passes through, Mr Chairman, I think
this is something that will be sort of censored and we will not
be able to treat the patients as they deserve. That's one
thing.
With regard to custodians, I
think my friend mentioned about the custodians. Of course, we are
front-line custodians, but there must be some difference between
the custodians as the family physicians or the psychiatrists or
individual physicians to hospitals and other institutions or
regulatory bodies. So there must be some way of differentiating
between the two.
Already now we have a problem
with third parties getting information because they get this
consent signed under coercion of the patients: "If you don't sign
this form, you won't get your benefits." We have a problem with
that. If this government can do something to stop that abuse by
the insurance companies, I'd greatly appreciate it, because we do
report to these people, but on top of that they want every
sentence of my clinical notes to give these benefits. They don't
need that information. There is very sensitive information not
only about the patient, but about the relatives and friends,
everybody else. I cannot go on censoring every sentence that I
have written. I don't know what is there. So I think if you can
do it justice and help, please try and do something about that
one.
With those comments, I will
end my presentation, and we'll be happy to take some
questions.
The Chair:
Thank you very much. We'll start the rotation with the Liberals,
and I must remind folks that we are on a very specific timeline
here, so it's about a minute and a half per caucus.
Mrs Lyn McLeod
(Thunder Bay-Atikokan): Thank you very much for
excellent presentations raising the concerns of front-line
providers. We know that a lot has to be changed, including that
directed disclosure by ministers, but may I ask, if the patient
had the ability to say, "I want my medical record not released.
Put a lockbox on it," would that interfere with your work as
front-line practitioners?
Dr McKibbon:
If I could respond, the problem with the lockbox notion is that
there are times when that kind of information is crucial to
protecting others: hospital workers who may be exposed to risks
from blood-borne infections; other patients in hospitals who may
need to know that a patient is at particular risk for a
communicable disease.
I think the correct way to
respond to this is to put our faith in the trust relationship and
to allow the physician to communicate with the patient and
explain to them the reason why any particular bit of information
needs to be released. My experience has been that patients,
knowing that and knowing specific reasons why things need to be
released, are greatly understanding of that. It's when they have
no sense of the control, no sense of where it's going and no
relationship directing it that they have the greatest difficulty
and where we offer them the greatest threat.
Ms Lankin:
Good morning, Doctors, and thank you very much for your
presentation. Many of the presenters have agreed with you that
there is a need for the committee to recommend to the minister
that this legislation be tightened dramatically to protect
private information.
The key question I have to
put to you, however, relates to the ability of health providers
to share information among each other. The relationship that you
identified between a patient and a doctor, the special nature of
that, is also true of the relationship, for example, between a
patient and a nurse practitioner or other regulated health
professionals. The core of the matter with respect to that
sharing of information: if we are truly to have integrated health
delivery, if we are to be able to move to primary care reform,
there's going to be a need to have some ability to share
information and to standardize the form in which that information
is recorded. There seems to be some resistance from some parts of
the medical community to that. Could you give us your views on
that?
Dr Koka: I
was going to comment about sharing information between the health
care professionals as well as specialists or other physicians. With regard
to standardizing the information gathering or charting, it's very
difficult, because what I need in psychiatry is different from
what my colleague in rheumatology needs or what my colleague in
the surgical field needs, or a family physician. If I try to
touch a patient, you know, when there's no need, of course I'll
be in trouble. So you can't check just everything. The problem
each patient comes up with is different. So it's difficult to
standardize.
We already have some forms
that we've come up with, like neonatal forms and other things. So
we do come up with some standardized forms as necessary, but we
cannot standardize charts as it is. Maybe if my friends have any
comments about it, I'll let Chris or Pierre-
Dr McKibbon:
Basically, if I could, the patient is always the ultimate
custodian of his record, and if the patient directs freely for
that information to be released to any other member of the health
care team then it's really quite proper, right and helpful for
the patient to release that.
The question is that the
patient knows at that point where the information is going. If I
ask one of my colleagues to see one of my patients, my patient
knows that I've asked them to see them and I've communicated
those details that were necessary for their care. It's out of the
ambience of that relationship that trustful care happens. The
matter with Bill 159 is that that relationship is not there.
Within a primary care network, within a co-operative care
arrangement between physician and nurse practitioner, that
relationship exists and in fact is extended and perhaps deepened.
The problem is when it happens outside a relationship of
care.
Mr Bob Wood (London
West): One of you gentlemen referred to the question of
informed consent. I'd like to now invite you to suggest a
solution. I'll give you one that you might want to comment on.
What about just asking for plain consent as opposed to informed
consent?
Dr Koka:
It's difficult to say plain consent. It has to be informed. The
patients are intelligent. They know what they're doing. They know
where the information is going and what it's going for. It has to
be informed. When we prescribe some medication or any treatment
we prescribe, we have to make sure we have informed consent. We
can't just say "blanket consent." I think it's not
acceptable.
0920
Mr Wood: One
of your colleagues said that he was concerned about the onus
placed on the physician if you asked for informed consent rather
than plain consent. One solution to that concern would be simply
to ask for consent as opposed to informed consent, which has, as
you know, a very defined meaning in the medical context.
Dr Bonin:
I'm not exactly sure how to respond to that. When a patient
consents to a treatment, they understand the risks, they
understand the consequences and the benefits of what's about to
be done. If they enter any relationship with their physician and
they're going to disclose sensitive information, I can't just ask
them to consent to giving me this information if they're not
going to know where this information is going to go.
I'm not sure I understand the
distinction between consent and informed consent, but I can't
justifiably ask a patient to tell me something sensitive if I
can't tell them what's going to happen to that information, and
just ask them to give me a blanket consent that anybody from the
Ministry of Health can request this information. He has to know
before he discloses this information what the consequences are
going to be.
Dr Koka: I
work under the Mental Health Act legislation, so I have to get
the patient to sign each time. Any information that goes to
anybody, he or she has to sign the consent form, a form 14.
That's laid out by the law. If any information is going to
anybody else without their consent, I'm liable. There's a fixed
penalty and punishment for that.
The Chair:
Thank you, gentlemen. We appreciate your being part of our
high-tech outreach here this morning. Thank you very much for the
content of your presentation as well.
Dr Koka: Mr
Chairman, thank you very much. Of course, it's a very short
period of time. We can't put all our views and impressions on
this bill. I'll try and see if I can put together some form of
information to you in writing.
The Chair:
Thank you very much. The clerk will make sure it's distributed to
all the committee members.
Committee members, we'll have
a brief delay while they get the next presentation in Sudbury in
position.
Good morning. I was expecting
to see a Patricia Hatala.
Dr Samuel
Berger: That may be me in another life.
The Chair:
Who might you be, sir?
Dr Berger:
My name is Dr Samuel Berger.
The Chair:
Well, Dr Berger, I think they've gone and dialled in our 9:30
instead of our 9:20, so the clerk is just trying to resolve this
little glitch in our travels down the electronic highway. Bear
with us, please, just for a second.
Dr Berger:
All right.
Mr Bert Johnson
(Perth-Middlesex): Where is he?
The Chair:
Dr Berger is in Little Current.
Mr Johnson:
Patricia, where is she?
The Chair:
She's still in Sudbury. I'm surprised they didn't just change
chairs.
PATRICIA HATALA
The Chair:
Good morning. I take it we're joined by Ms Hatala.
Ms Patricia
Hatala: That's correct. Good morning.
The Chair:
We have 10 minutes for you here today. Thank you for joining us
in our deliberations.
Ms Hatala:
Ladies and gentlemen of the panel and all concerned in the
opinion-gathering re Bill 159, the Personal Health Information
Privacy Act, thank you for giving me this opportunity to make
this presentation.
As in any issue or complaint,
it is much better to accompany such with suggestions as to how a
situation may be
approached or possibly resolved. I am making this presentation
with this in mind. I do not intend any of the comments herein to
be taken as accusations or personal or general affronts.
Am I not correct in believing
that, as a condition for employment in the health care field, all
workers are sworn to keeping information contained in all health
care matters strictly confidential? If this requirement is not in
place, it should be in place. If this requirement is in place and
is not being monitored and/or respected by those involved in
care, including volunteers, appropriate action should be taken.
If confidentiality matters are in place and being respected, it
would seem that privacy of personal health information would
almost be a non-issue.
Having myself worked in the
health care field for some 30-odd years, I can say I did so
knowing and believing that any transgression of confidentiality
on my part could result in the termination of my employment. I
wholeheartedly agreed with this provision then, and I still
do.
This being said, my own wish
in this matter is that all my health care records, whether these
records contain sensitive material or not, be available to
whomever happens to be my health care provider at any given time,
to enable optimum, most efficient care or, to put it another way,
to enhance the ability of the caregiver to provide the most
appropriate care at any given time under varying prevailing
circumstances. This would, of necessity, include all health care
providers, not just medical care providers; for example,
naturopaths, chiropractors, acupuncturists, not just MDs and
nurses.
Health care staff should be
discouraged from discussing cases in hallways and cafeteria
settings where these areas are shared by the public.
If a possible transgression
of confidentiality seems to have taken place, we must keep in
mind that just because a person's health history becomes public,
this does not necessarily mean it was medical personnel who made
it so. Individuals share their health status information with
friends and arbitrary acquaintances on what seems to be a
continuing basis.
In my view, the more relevant
information that is available to those carrying out testing
analysis and/or hands-on care, the greater the degree of
detailed, accurate and comprehensive diagnosis that can be made
and the greater degree of appropriate care that can be given
resulting in greater benefit to the patient/client.
If health care
records-regular type as well as sensitive type-are available to
health care workers at any given time, then results of recent
tests are therein contained. This may well contribute to
cost-cutting, as unnecessary repeat testing could be avoided.
Although in health care it
is advisable to deal with all patients/clients with utmost care
and precaution, if so-called sensitive contents such as a
diagnosis of AIDS are not made available to staff, cohabiting
partners and health care people who are dealing with the person,
either person to person or in analyzing material for diagnosis,
these people are unnecessarily put at risk and may not be
appropriately cautioned. This situation may result in a person
not taking extra precautions in order to ensure
self-protection.
Health care records belong
to the patient, as I understand, and should be readily available
to same. At the present time, if I wish to choose a different
physician, for instance, my records would only be transferred to
the new physician, and then only those records which the present
physician deemed relevant. I happen to consider all of my medical
health care records relevant.
0930
At present, if one
physician leaves town, it is sometimes nearly impossible to
access one's records. Computerizing all records and making them
available to those who require them at any given time would be a
large undertaking. However, in this day and age of
computerization and communications refinements, I have no doubt
that such could and can be accomplished and could and would be to
the benefit of all concerned. Such a move may very well be most
cost-efficient in the long run.
Perhaps a system-and this
is going to bring up exceptions in your mind, I'm sure-which
would allow a patient-client to choose whether the patient-client
wishes to have all records available or wishes to keep records or
parts of records private could be set up. If this is pursued,
identification, for example, by thumbprint might be a good way to
ensure that an individual's records are not confused with that of
anyone else. This mode of ID, of course, would be a voluntary
one.
In conclusion, I would like
to say that as for my health care records, I would like them to
be specifically identified to me-example, thumbprint-made
available to me and made available to whichever health care
assistant is serving me at any given time. Thank you for your
time and attention.
The Chair:
Thank you very much, Ms Hatala. If you're so inclined, we've got
a couple of minutes. I'll give the time to the next party in
rotation, which is the NDP.
Ms Lankin:
Thank you very much, Ms Hatala. We appreciate your presentation
and joining us here today.
I think that the last
statement you made really sums up the opinion of a lot of
citizens we've heard from by letters and some who've appeared
before committee that our health records are our own. We want to
have full access to them as individuals and we want to ensure
that those health professionals we're dealing with, who we have a
trusting relationship with, have access to all of the information
that we want them to have.
A minute ago you also made
reference to the possibility that an individual patient may not
want all of their health records released at some given point.
That's been referred to as a lockbox provision. The symbolism of
that is that you'd be able to take some information and put it in
a file cabinet drawer and lock it away and it wouldn't be passed
on from health care provider to health care provider unless you
changed your mind and gave approval to that.
Some of the health care
professionals we've heard from, doctors in particular, have said
no, they believe that the doctor or the health care professional is in
the best position to judge whether or not information can or
should be shared, and that it would be dangerous to leave that to
the patient to decide. I think it's obvious, if you have a good,
trusting relationship and you've talked that through, you're
going to come to some consensus between the health care provider
and the patient. But if it comes down to it, in the end, do you
believe that that information belongs to the individual and that
you should be able to make a decision that some aspects of it
perhaps are not shared, or do you think that once it's in that
health record, any health professional you choose to share the
whole record with should have access to all aspects of the
information?
Ms Hatala:
I think that health care workers know what they're doing. They're
credible people. They know what confidentiality really means. I
can't help but think how making all the information available to
them could be a detriment to me. Right now I'm being treated,
trying to heal my lungs from my asthma symptoms. A situation like
this is occurring now. For instance, something that happened
earlier in my life and has medical records attached to it that
aren't available at this time might not clue somebody in as to
how my body reacts to different things, because each individual,
of course, is an individual, and our chemistry's all different.
So I think, yes, they should have the access.
I think as far as privacy
goes, patients are already choosing to keep diagnoses under
wraps. As I said, I did work in the medical field. When the AIDS
situation did come up, sometimes some of the requisitions we
would get wouldn't tell us as health care workers that this
person had this particular disease. We, of course, are supposed
to deal with everything with the utmost care, but we could be
exposed. I don't think that's really correct for somebody who
already knows the confidentiality system is in place and it's
expected of you.
The Chair:
Thank you, Ms Hatala, for appearing before us here today. We
appreciate it very much and thank you for a thoughtful
presentation.
Ms Hatala:
Thank you very much. Have a good day, everybody.
INTERCILIUM
The Chair:
Dr Berger, we're back with you again in what I suspect is a
first: legislative hearings in Little Current. Good morning and
welcome to our proceedings. The floor is yours for the next 20
minutes.
Dr Samuel
Berger: Thank you very much. I actually intended to
leave some of the time for questioning, so I don't know that I'll
speak the full 20 minutes. I just would like to say in
introduction that I'm extremely impressed with the equipment at
the Manitoulin Health Centre in Little Current. This will change
the face of rural medicine. This is a pilot project here among
several associations, but I was quite taken aback to find that I
could speak with you from the island.
I'd like to ask, first of
all, whether the comments that I submitted have been received by
the committee.
The Chair:
Yes, they have; thank you.
Dr Berger:
Good. I'm just going to give a word of background initially. I've
worked in the area of medical informatics for the last seven
years and I'm currently chairman of an Internet privacy company,
which is Intercilium Inc. We are developing a product which has
to do with health privacy, so my interest in this area goes back
for the seven years that I've worked in the field.
I'm particularly concerned
about what I believe are the deficiencies of the act to address
head-on the whole issue of the Internet age. I'm going to
elaborate somewhat on the comments that I made in the preface.
Although I've submitted several comments, there are really four
main issues that I want to cover. Number one is, again, the issue
of the Internet age. The second issue is legal access to personal
health information.
The Chair:
Doctor, could I ask you to either pan the camera to your right or
move slightly to your left?
Dr Berger:
OK, how's that?
The Chair:
That's much better; thank you. Oh, now you've gone a bit too
far.
Dr Berger:
OK, one second.
The Chair:
There, stop.
Dr Berger:
I can hold this position.
Thirdly, I think that the
act is perhaps the weakest in the areas of consent. Finally,
although I didn't elaborate on this in the preface but I do refer
to it in terms of 7 (a), I think that the whole issue of genetic
testing and the privacy issues surrounding it must be addressed
by the committee.
0940
First of all, in terms of
the Internet, we have a situation here where there are commercial
companies and other Web sites which are very involved in the
collation and collection of personal health information. I
believe if this is not specifically spelled out, if these sites
are not spelled out as health care custodians, they can fall
between the cracks of the entire act. Several commercial
companies, for instance, are offering personal health records,
personal health diaries, on the Internet, or they are involved in
diet management, sports management, many different areas where
they are actually asking all sorts of questions. You could go to
an aerobics site that might ask questions such as, "Do you have
any heart disease," or, "Do you have high cholesterol?" You've
got an absolute plethora of sites out there that have
tremendously sensitive information about individuals and they are
able to use and distribute this information without any
particular act of legislation curtailing it.
I feel it's very important
to stress that the act should define-in my view, a health care
custodian should be anybody who has personal health care
information, whether it be a school or an employer. My particular
interest is that, in the Internet age, the committee specifically
delineate that Web sites which hold personal health information
must protect this information. That's the first point I strongly
wish to stress.
Of interest, I will mention
as an aside-and I didn't address this in the brief but it's
something the committee may wish to consider-there is a very big issue
of physician privacy which is coming to the fore, because many of
these commercial sites actually ask people, "What is the name of
your family doctor?" or, "What is the health care institution
that you attend?" In fact, these sites can compile databases on
physicians and health care workers without the health care worker
or the physician knowing that these questions are being asked
about them. I think, at best, it's an invasion of privacy; at
worst, it's extremely dangerous because, as you know, physicians
who perform abortions, for instance, have been shot in this
country. So you don't really want that information being pulled
out by people on sites.
I think the committee has
to look a little bit at the two sides of the coin: both the
protection of personally identifiable health information of the
subject whom it concerns but also to keep in mind the health care
providers and their issues of privacy. But that is an aside.
Secondly-and I really
debated whether to bring this issue to your attention, because I
think it's the central issue that is talked about in the United
States and Canada, as well as in many other jurisdictions, that
being that law enforcement can summons a medical record. I must
tell you, the most uncomfortable question I'm probably ever asked
as a physician is when a patient says to me, "Is this information
confidential?" I have to answer them, "With the exception of if
your medical record is summonsed." I believe that destroys the
patient-physician interaction and gives law enforcement and the
judicial system a privilege that supersedes and is greater than
our own privilege. I think physician-patient privilege should be
at the level of solicitor-client privilege, which is recognized
as the highest privilege in terms of these matters.
The concerns are becoming
more acute. I refer you to an article just published by the Wall
Street Journal the other day. Where court records become public,
there is a new strategy out there of both individuals and
organizations publishing public court documents. These court
documents, based on summonses, often contain information of a
medical and psychiatric nature. Again, when you enter these
themes into the world of the Internet and the very strong search
mechanisms on the Internet, these issues easily become very
apparent. There is not the so-called practical obscurity.
In fact, there is already
anecdotal evidence. One woman was searching the genealogy of her
family with her daughter, and a divorce court proceeding came up
in the search which referred to an affair she had had. Now, this
isn't a medical matter but it came up in front of the
screen-easily obtained. So anything medical and psychiatric that
is contained in any public court record is going to be fair game
for the world of the Internet and I think opens up tremendous
privacy issues. So I would urge the committee to consider that
side of things.
The other side is that
nothing is sacrosanct. When you need information from people and
they realize law enforcement can have access to it, it
tremendously influences the medical care you can provide and the
whole realm of privacy that you want to guarantee to patients.
There are very good studies done by the California HealthCare
Foundation in the United States which showed that one out of six
Americans have done something actively to protect the
confidentiality of their medical information. Usually that active
thing is either withholding information or lying to health care
providers. I don't believe the situation is any different in
Canada. It's important to know what drugs people are using, what
sexually transmitted diseases they may be susceptible to and so
forth, but if people have the fear of this information being able
to come up in a court document or otherwise, they will be
withholding the information, which skews medical research and
skews good medical care.
There was a section that I
referred to in my comments about labour relations, and I'm
particularly shocked by that because employers are very
interested in getting information about individuals. I worked in
a lot of rural communities where the employers are very actively
involved through the Workers' Compensation Board-it's under a new
name now-and other areas, and it does influence hireability and
employability and job promotion and so forth, so I'm a little bit
perplexed at the entire section where labour relations are left
out of the picture by the act.
I'm going to move to the
area of consent, and I can very briefly summarize this. The
feeling of ourselves as a company and I think of most privacy
advocates is that the principle that information given with
consent for one reason should never be used for another reason
without further consent should be adhered to. While I commend the
committee for addressing this in terms of a research and ethics
committee, that researchers, if they want to use information
given for one reason or another, should have to clear an ethics
review board, I think, more importantly, they should have to
clear the person who first gave the information.
The concern is, if there is
cover-all consent-and that's why I suggested that it's very
important to put a time limit on any consent given, because
sometimes you have people who say, "Yes, my medical record can be
used for research," and two years later they have a positive HIV
diagnosis and they don't want their records used for research any
more because they don't feel comfortable with who may be getting
their records, yet they signed a blanket consent without time
restraint. So I would urge the committee to place into the
legislation that consent must be on a per-use-with-time-limit
basis in all instances and the consent must be obtained from the
person from whom the information is obtained.
It's important for you to
know that Minnesota has legislation that adheres to that
principle. The Mayo Clinic in Minnesota actually cried a lot
about that information because they do a lot of retroactive
research on very good files from decades ago. They felt, "Now we
have to go and ask somebody from 30 years ago or ask their heirs
if we can do a new research project," but in fact the Minnesota
legislation said, "Yes, you have to do that." They are finding
out that most of the time it's going without problem and greater
than 97% of the patients who come to the Mayo Clinic are giving
widespread consent to their information being used for research.
But the issue is, you have to get the consent from the individual
involved.
Finally, I want to say
something about genetic testing. You have a clause 7(a) which
talks about individuals being dead for more than 30 years, that
it's open game to find out anything. This is extremely
troublesome, particularly in the world of genetic testing. I'll
give you some examples.
0950
You could have somebody who
at age 44 dies of Huntington's chorea. At that time, they've got
a four-year-old or an eight-year-old child. Thirty years later,
that child's going to be 34 years old. Maybe that child is in a
position to become a CEO of a Fortune 500 company. Incidentally,
about 60% of Fortune 500 companies look into the health
backgrounds of prospective employees before prospective job
advances. That record will be open game. If they want to solicit
any record from the father of a patient, they'll be able to.
In fact, this is a very hot
topic that was just addressed the other day, because in the
United States there is a company that has been doing genetic
testing for carpal tunnel syndrome. It's a syndrome that affects
the activity of the wrist. They were doing it largely unbeknownst
to employees. But what I wanted to point out is that the Genetic
Alliance, which is a coalition of patient advocacy groups, did a
study just of 220 respondents, but 16% of them cited bias at work
and in the military based on documented cases of genetic
discrimination. The survey included such cases as a woman who
alleged she was denied long-term disability insurance because the
company said she had a predisposition for Alzheimer's disease.
Its decision was based on a doctor's scribbled notation in her
medical record that her father might have the condition. Again,
one has to understand that when you have 50-year-olds dying of
diseases, and 30 years later their information can be studied,
their own children are only going to be 50 at that time and can
face tremendous discrimination for themselves and their children
and so forth.
I think the act has not
been cognizant enough of the entire Human Genome Project and the
implications. I think a good starting place would be to say no,
somebody being dead for 30 years isn't enough. I think we should
increase it to at least 150 years. You use the figure of 150
years at another point in the act, to say that in terms of
recorded information, it doesn't apply to information longer than
150 years.
Those are the main points
that I'd like to address. I'd be happy to take any questions.
The Chair:
Actually, Doctor, you've timed it very well. We have almost
seconds left. Knowing myself and my colleagues, we can hardly get
our names out in that amount of time, never mind pose a question
and have a reasonable answer. But I do appreciate your very
detailed and thoughtful presentation before us here today. If you
have any supplementary thoughts, please feel free to send them to
the committee. I'm sure if the committee members have any
questions, we've got your particulars on file and hopefully you'd
be able to respond to their questions at that time. Thank you
again for joining us today.
MAVIS LIPMAN
The Chair:
Our next conference presentation is from Ottawa this morning.
Good morning. Ms Lipman, I assume?
Ms Mavis
Lipman: Yes, it is Mavis Lipman.
The Chair:
Good morning and welcome to the committee. We look forward to
hearing your presentation. The floor is yours for the next 10
minutes.
Ms Lipman:
I thank you very much for the opportunity to submit my brief
today. I actually did prepare 20 copies of my brief with
supporting research and professional statements. I'm not sure
where I should send them, but perhaps you could tell me
after.
The Chair:
We will do that; thank you.
Ms Lipman:
Although I am from Quebec, and my profession is a medical
laboratory science technologist, I have something in common with
many individuals and families in Ontario. Some of our wonderful
children went into therapy in the last decade with no memories of
childhood sexual abuse. They were exposed to recovered memory
therapy, which elicited in many of our children the most
horrendous and horrific accusations of childhood sexual abuse,
mostly against their parents, and mostly against their
fathers.
We have had a great deal of
difficulty having access to therapy records. In the past, I
possibly could have respected the need for complete
confidentiality and privacy in protecting medical and mental
health records. However, when unsafe and unproven mental health
practices are being used by mental health caretakers or
practitioners, I think we have to question how protected those
therapy records can be. Those therapy records contain the
information that shows how those memories emerged in the
therapeutic setting and how suggestive those practices were.
The professional
associations today, since 1993, such as the American
Psychological Association, the American Psychiatric Association,
the Australian psychological association, the Canadian
Psychiatric Association and the Royal College of Psychiatrists in
Britain, have now condemned these practices. Especially the last
one, the Royal College of Psychiatrists from Britain, has
condemned all of those suggestive practices that therapists were
using in their therapeutic setting to elicit these memories, like
journalling, guided imagery, age regression, hypnosis and sodium
amytol interviews. Some of our children were exposed to this.
The two cases that I
present in my brief went into the criminal court system. One is
my husband, AG. A daughter from his first marriage, whom I knew
very well for 16 years, who visited our home with her friends,
with her boyfriends, and lived with a daughter of mine also for
close to a year in
Ontario, was his loving, loyal daughter. After going into therapy
for pain management of a back injury, and maybe some other issues
in her life that I am unaware of, she emerged with the most
heinous, horrendous, terrible accusations about her father.
Since my husband for close
to 20 years had an extremely severe case of myasthenia gravis,
this had a major effect on his health. He had a major
exacerbation requiring major invasive procedures, was
hospitalized for seven weeks, had numerous syncopes, fell down
stairs, broke ribs, broke teeth, and was unable to defend
himself. I was in and out of the courts for four years. He lost
his entire family. He lost his entire life's savings and a legacy
that can't even be passed on to his grandchildren. The daughter
was in therapy in Toronto.
The other case is a friend
of mine whose daughter also received therapy in Ontario. His case
was presented before the courts in 1992, when judges were not
familiar with the now-discredited and inadmissible, in many
courts, cases related to recovered memory therapy cases. He was
incarcerated for six years. Because he was taken to the Millhaven
Assessment Unit in a protective cage situation, considered a
dangerous sex offender, he was assaulted several times just when
he was being assessed, and that continued throughout his
incarceration. He lost his children, his job, all his assets and
even his good health in the process, and he's not 60 years of age
yet. It is a major concern for myself and other people so
affected that we have to know what went on in those therapy
sessions and what kind of practices were utilized by the
therapist. We don't want this to happen to other people.
1000
As a medical laboratory
science technologist, every method in my laboratory is
scrutinized and given accreditation by qualified boards in my
field. Every test system I have must have three quality controls:
a normal level and two abnormal levels. We can't practise without
disclosing that type of information. Patients would die if our
test systems were not working. Physicians would not be able to
diagnose and treat patients effectively.
In my rationale I have
stated that just as medicines are tested for safety and
effectiveness before they are used on patients, therapies should
be tested for safety and effectiveness before they are used on
clients. Informed consent to mental health care treatment is
based on a full, fair and truthful disclosure of known and
foreseeable risks and hazards of the proposed treatment and of
alternate treatments. This process allows the patient, client or
legal guardian of the patient to exercise free and independent
judgment by reasonably balancing the probable risks against the
probable benefits.
A standard of care in
mental health treatment reforms the mental health industry as a
whole by establishing a firewall of testing for safety and
effectiveness and to stop fads like lobotomies in the 1960s,
recovered memory therapy, multiple personality disorder and
satanic ritual abuse, which swept the profession in the last
decade and a half. This would provide an incentive for the mental
health profession to keep themselves and their clients informed
about therapies that do and don't work.
I also think a client
should have access to the therapist's credentials, the experience
of the therapist, the type of therapy the client may or may not
want to engage in and also the right to cease that therapy if it
seems harmful and ineffective.
In looking at Bill 159,
part I, "health care practitioner" means (d). I was unsure if
this could include unlicensed people, self-styled people who
touted that they were health care practitioners who were
untrained, who received payment without any accountability for
who they were and for somebody monitoring what type of practices
they were using on their clients. So I have included "must be a
certified member of an accredited organization where a recognized
standard of care is maintained."
In part VI, disclosures in
proceedings, which I'm particularly sensitive to at the moment, I
thought that an addendum-perhaps I haven't written it in the best
words, but if it was of interest to adopt something-could include
that mental health records and therapy records should be
produced, if subpoenaed (i) when malpractice is strongly
suspected, (ii) when a witness's testimony is unreliable due to
mental illness, (iii) when a witness's testimony is unreliable as
a result of suggestive or unproven mental health practices, and
(iv) when a witness's accusations remain uncorroborated.
A major problem with many
cases of repressed or recovered memory therapy that went through
the courts was that those men were either charged or convicted
based solely on the uncorroborated testimony of the complainant,
who had never had memories of abuse and had gone into memory
retrieval therapy.
In part VIII, I was
concerned because I have been a parent of children who have had
epilepsy and other problems in their lives. I had to be the
dominant caring parent until they were of age, and of course they
still needed a great deal of care, monitoring and assistance with
physical problems. I was concerned, if I understood it correctly,
because I feel that a parent should be able to access a record of
counselling, if the child is under 16 years of age, if the health
service appears harmful and ineffective to the child. Maybe I
didn't understand it correctly, but I don't think that
information can be withheld from a valid, supporting, caring
parent.
I don't know if I have
time, but I have just sort of highlighted some other
recommendations. I feel it is vitally important that we-
The Chair:
Ms Lipman, I should have mentioned, but I didn't want to
interrupt you, that the clerk has in fact distributed a copy of
your presentation to us, which I guess you sent in by fax. We
have gone a fair bit over time already, but I wanted you to get
through all your recommendations on Bill 159. Perhaps I could
just ask if you've got any brief closing comments?
Ms Lipman:
My brief closing comments are, I think we really need to inform
the public through the Ministry of Health, professional
organizations or other key areas that we have to watch out for therapy that is
damaging patients. I believe licensed therapists who are
mismanaging the treatment of their patients must be held
accountable and brought before their boards. Unlicensed
therapists should not be able to treat and diagnose patients, and
if they mismanage their clients, they should be brought before
the courts. That's my message.
The Chair:
Thank you very much. On behalf of the committee members, we very
much appreciate the fact you drove all the way to Ottawa this
morning and that you took the time to prepare and make this
presentation before us today.
Ms Lipman:
Thank you very much for your time.
The Chair:
Ms Lankin, before we go on to the first group, you
apparently-
Ms Lankin:
Yes, a request to legislative research. Yesterday, research
officer Susan Swift circulated a memo to us that included a copy
of the model state health privacy legislation that has been drawn
up by two Georgetown professors. Also, in a number of
presentations we've heard reference to the Minnesota legislation,
and we heard that again this morning. I was wondering if it would
be possible to ask legislative research-perhaps our research
officer here could get some assistance with this, because I know
he'll be busy doing the summation-to take a look at the model
state legislation and the Minnesota legislation and give us a
summary of the philosophical underpinnings of those pieces of
legislation and, if possible, the difference in approach between
those and Bill 159. If it is possible for that to be done and
appended to the summary of the proceedings the committee expects
to receive next Wednesday, that would be very helpful.
1010
SURVIVORS OF MEDICAL ABUSE
The Chair:
Our first group here in Toronto this morning is Survivors of
Medical Abuse. I call them forward to the witness table, please.
Good morning and welcome to the committee.
Ms Josie
MacPherson: My name is Josie MacPherson, and I'm going
to be representing my group here today. I'm a facilitator of
SOMA, Survivors of Medical Abuse, a self-help group respecting
patients' rights.
I have read the bill and
have several concerns. The first is that the number of
organizations and persons designated as health information
custodians is too lengthy. It includes a health care
practitioner, a drugless practitioner, a long-term-care service
provider, a child and family services service provider, a person
who operates a hospital, an independent health facility, an
approved charitable home for the aged, a home for special care, a
home for retarded persons, a retirement home for the elderly, a
pharmacy, a laboratory or a specimen-collection centre, an
ambulance service, a community health program or service, a
program or service funded under the Developmental Services Act
and a program of employment supports.
It also includes an
evaluator within the meaning of the Health Care Consent Act, an
assessor within the meaning of the Substitute Decisions Act, a
medical officer of health, the minister, a district health
council, a college within the meaning of the Regulated Health
Professions Act-and I will refer to this again later-Cancer Care
Ontario, a person who maintains a registry of personal health
information that relates to a specific disease or condition or
that relates to the storage or donation of body parts, a person
or class of persons who maintains a repository of personal health
information for the primary purpose of data analysis or research.
A health information custodian does not, however, include an
aboriginal healer, midwife or spiritual healer.
The bill provides
protection from liability to health information custodians and
persons employed by or in the service of custodians if they act
in good faith and reasonably in circumstances.
This list is too
exhaustive. It leaves a lot of room for error and abuse and leads
me to believe it will be extremely difficult to police and
safeguard. According to Ontario's privacy commissioner, "Under
this bill, individuals have little control over the collection,
use and disclosure of their personal health information."
I made a submission to the
federal Office of Health and the Information Highway information,
analysis and connectivity branch on November 13, 1998. They have
put together a report providing strategic advice and
recommendations to the Minister of Health regarding the
development of a strategy toward a Canadian Health Infostructure.
Has this report been used in drafting Bill 159?
My second concern is that
this bill will be difficult to police and safeguard. Patients'
rights will be violated. Under the proposed bill, a patient may
appeal to the privacy commissioner if they feel their health care
information has been misused. However, the bill provides
liability protection to health information custodians as long as
they can say they were acting in good faith. This provides a
large margin of error for health information custodians. What
guarantee do patients have that there will be greater
accountability in this system than there is in the health care
colleges, specifically the College of Physicians and Surgeons of
Ontario? Fewer than 4% of complaints made to the College of
Physicians and Surgeons of Ontario ever make it to a successful
closure for the patient at the discipline stage of the
process.
In 1997, HPRAC, the Health
Professions Regulatory Advisory Council, retained a consultant to
review the complaints and discipline process at the College of
Physicians and Surgeons of Ontario. Currently, another review is
underway by an independent consulting firm, KPMG Consulting,
commissioned by the Ministry of Health, to conduct a review of
the complaints and discipline process at the College of
Physicians and Surgeons of Ontario. Under Bill 159, professional
colleges are designated as health information custodians. Why
should patients trust them with this privilege? Clearly, it
provides them with more information to invalidate patients' needs
and concerns.
There are numerous accounts of the lack of
accountability at the College of Physicians and Surgeons of
Ontario. More recently, Dr Deep, a Toronto cardiologist who
allegedly defrauded OHIP in the amount of $1 million and has been
under their scrutiny for 30 years, is still practising and has
not been convicted of any charges. In fact, the OHIP fraud unit,
a secret inner body within the College of Physicians and Surgeons
of Ontario, has failed to bring successful closure to this case.
Refer to "Secrecy Laws Hamper Probe of MD," the Toronto Star,
February 13, 2001.
The Chair:
Ms MacPherson, I probably should put this on the record here
again for your benefit. When individuals get into mentioning
specific names, it's appropriate to caution witnesses that while
MPPs enjoy parliamentary privilege pursuant to the Legislative
Assembly Act, it's unclear whether or not these privileges and
protections extend to witnesses who appear before our committees.
For example, it may very well be that testimony you've given or
are about to give could be used against you in a legal proceeding
or elsewhere. We just caution you to-
Ms
MacPherson: OK. I wasn't aware of that, but I'm simply
referring to newspaper articles.
The Chair:
Let me just say that it's no different than what would happen if
you had a conversation out on the street. I just don't want
people to have the perception they're covered as MPPs are
covered.
Ms
MacPherson: Thank you for sharing that. I do want to
continue because I am referring to newspaper articles and I'm
backing up everything I say with newspaper articles.
The confidentiality rules
of the CPSO disabled the college from serving its mandate to
protect the public, and I do have a newspaper article that
attests to that.
A patient who went to see
Dr Deep for heart-related problems and later learned her medical
files contained misinformation about psychotherapy, for which he
billed OHIP, now has an inaccurate, false medical record. Under
Bill l59, this inaccurate file will be given to virtually
everyone, except for an aboriginal or spiritual healer, and will
follow her everywhere. She can attach a letter to her file saying
she disagrees with the psychotherapy segment, but chances are
future physicians will regard her as a difficult patient and
ignore her plea for accuracy of her record. Will it affect her
health care? In a word, yes.
My third concern is that
when a patient's medical file is inaccurate with her history or
symptoms not taken down as they are stated, then the patient's
best health interests are not served. I will use the example of a
Beeton mother of two young children, one a newborn, who died at
the Southlake Regional Health Centre on January 7, 1998, due to
human error, and I've attached the newspaper article for this
one. I want to make a correction. It's the Era-Banner, February
27, 2001.
There is an inquiry taking
place at this time into the death of this woman who was found
dead in her hospital bed. She told her common-law husband days
before her death she did not feel her medical complaints were
being taken seriously by the hospital personnel, and this again
is backed up in newspaper articles. "Although Desrochers had been
having between three and 25 bloody bowel movements in the weeks"
preceding her death, doctors failed to diagnose her with extreme
inflammatory colitis. The day before her death, she had 22 bloody
bowel movements. The day of her death she had 17 bloody bowel
movements. The purpose of the inquiry is not to assign blame, but
to ensure that a similar situation does not happen again.
However, the patient's loss is total and irreversible. I ask, why
would a patient, such as Ms Desrochers, who was experiencing such
severe symptoms in an Ontario hospital, not be taken seriously?
Were her medical charts and files accurate? Again, I'm posing
questions.
In summary, I would like to
say I do not believe Bill 159 will serve patients. It may very
well serve medical research corporations, giving them greater
access to patients' health information, but at what cost to the
patients? What about the Hippocratic oath? Whatever happened to
doctor-patient confidentiality? It cannot possibly be honoured
under this proposed bill.
Finally, I agree with the
federal Privacy Commissioner, who stated the bill should be
scrapped. Thank you for your time.
The Chair:
Thank you very much. That affords us about three minutes per
caucus for questioning.
Mr Wood:
Maybe I can come back to your last statement. I got the
impression you don't like this bill very well. What the federal
commissioner suggested in effect was a bill based on their act,
Bill C-6. I don't know whether you've had a chance to look at the
federal act. Do you like the federal act? Are there things you
don't like about the federal act?
Ms
MacPherson: I haven't had a chance to read that bill
separately, so I can't really comment.
1020
Mr Wood:
At the moment, professional disciplinary bodies have quite wide
access to patient records for the purpose of the work they do.
The issue has arisen before the committee: should that continue,
should there be restrictions on that? I wondered if you might
share with us whether or not you think there should be some
restriction on the access of disciplinary bodies to medical
records? In other words, right now they can access, without your
consent, your records for the purposes of disciplining a
physician. Should that continue? Should we put restrictions on
that? What's your view of that?
Ms
MacPherson: I certainly don't feel these should be
health information custodians and, carte blanche, be able to go
in there and have access to all of our medical records. Do I feel
there should be restrictions? I think there should be
restrictions and, unless it affects the case in question, a
person's health records from their entire history should not be
presented publicly. Yes, I do.
Mr Wood:
Let me ask you about another issue we've heard about, and that's
the question of research. We've heard some people say that for
certain kinds of research, because of the small sample size, you
can't do the research
unless you can access information without the patient's consent.
Consent isn't practical for reasons I won't bore you with. That's
what we've heard. Now if we come to the conclusion that's right,
there are a certain number of research projects that can't be
done unless we allow access without consent. There are two things
we can do. One is to say, "OK, we'll allow access in those
limited circumstances with oversight," or we can say, "No, you
just aren't going to be able to do that kind of research in
Ontario." I wondered which side of that issue you might come down
on.
Ms
MacPherson: I cannot agree with taking a patient's files
without consent. I still feel that medical information belongs to
the patient. It is their private, confidential information, and
if you can't access it with their permission, you should not
access it at all.
Mr Wood:
If we reached the point where we say what you just said, we have
to say there are certain kinds of medical research you cannot do
in Ontario. You'd be prepared to say that?
Ms
MacPherson: I'm not familiar with those types of-
Mr Wood:
By the way, I'm not saying we've come to that conclusion. I'm
just inviting you to comment. If we reach that point.
Ms
MacPherson: Does that situation even exist?
Mr Wood:
I'm putting you on the spot here.
Ms
MacPherson: I know.
Mr Wood:
What would you do? If we reach that point, would you be prepared
to say no research of that nature in Ontario or would you be
prepared to allow access?
Ms
MacPherson: First of all, I just want to qualify that
and say I'm not aware of a type of research going on in the
health field where the sample size is so small that you have to
resort to going into patients' health records without their
permission. Then my other point is, if it's a valid piece of
research, chances are the patients would give consent because
they want to get better and they want to find solutions to the
problem as well. I feel there could be something underhanded
about it because we're talking about having to take these files
without the patient's consent. That's where I stand.
Mr Wood:
Thank you. Those are my questions.
Mrs
McLeod: I too want to start with the issues you've
raised about the long list of people who are identified as health
information custodians.
Ms
MacPherson: That's my main concern.
Mrs
McLeod: I think your concern is probably that these
people, by virtue of being defined as health information
custodians, also have a privileged access to patient records, and
there's a long list. Certainly the federal Privacy Commissioner
raised the same concern, I think particularly around the district
health councils and members of district health councils.
But I want to flip it
around for a moment, if I may, and ask, first of all, do you
think we need some legislation that puts rules on people who are
going to hold health information because of the nature of the
work they're doing, whether it's a physician or a long-term-care
institution? We all believe the legislation needs to be tightened
up, but if the focus of it is on putting rules around these
people who get access to health information because people go to
them or they're staying with them, would you think the list is
too long then?
Ms
MacPherson: I like the idea of putting rules and
restricting access to people's health files and not, carte
blanche, allowing anyone to have them. I think putting a set of
rules there with restrictions is important. The other point which
I think is very important is the inaccuracy that can be found in
health records. I use the example of the patient who complained
in the Dr Deep case. Basically she didn't go for psychotherapy.
She went for a heart-related ailment, but according to her file
she was a psychiatric patient. I'm sure she'd like to have that
cleansed from her records, and it's not easy to do. We've come
across in our group many cases where patients have found
inaccuracies in their medical records. You can't really change
that; you're stuck with that, whether it's a label or
whatever.
Mrs
McLeod: That's certainly an issue the committee has
heard before and, in fact, a concern that Bill 159 makes it even
more difficult to correct a medical record.
Ms
MacPherson: I'm concerned about that.
Mrs
McLeod: One of the suggestions that was made to us was,
while questioning the College of Physicians and Surgeons of
Ontario, that when they have convicted somebody of fraud, there
is an obligation to go back and inform the patients who may have
been affected by that individual's malpractice and that those
records would then be automatically corrected.
Ms
MacPherson: Is that in place right now?
Mrs
McLeod: No, that's a suggestion that's come before the
committee. In fact, what's in the legislation right now would say
that you don't have the right to appeal to the privacy
commissioner if the health practitioner has attached a statement
of disagreement to the correction of the record, which takes away
even the ability to appeal to the privacy commissioner. That's
definitely a concern we've had.
Ms
MacPherson: And I hope you will address it.
Mrs
McLeod: I hope so too.
Ms Lankin:
Thank you very much for your presentation. My colleagues have
covered the questions I had, so I have no further questions.
Ms
MacPherson: Thank you very much for your time.
The Chair:
Thank you for coming before us here today.
ONTARIO ASSOCIATION OF OPTOMETRISTS
The Chair:
Our next presentation will be from the Ontario Association of
Optometrists. Good morning and welcome to the committee.
Dr Christopher
Nicol: Good morning, ladies and gentlemen, honourable
committee members and Mr Chair. I have a bit of a cold, so I hope you can
bear with me and I can come through loud and clear.
My name is Christopher
Nicol. I'm an optometrist in private practice. I also act as a
policy consultant to the Ontario Association of Optometrists. I'm
presenting comments to the committee on behalf of the Ontario
Association of Optometrists today.
The Ontario Association of
Optometrists-and I'll use the short title
"association"-represents approximately 80% of the optometrists in
Ontario. Optometrists are primary eye care providers regulated
under the Optometry Act and the Regulated Health Professions Act,
1991. Optometrists assess, diagnose and treat vision disorders
and prescribed diseases of the eye. We are presently requesting
an extension to our scope of practice to include the controlled
act of prescribing some therapeutic pharmaceutical agents.
For the purposes of Bill
159, optometrists would be considered as health care
practitioners and health information custodians. I'd like to
thank the committee for this opportunity to present the views of
the association on Bill 159 to the committee.
The process of review has
been open and all stakeholders have been provided ample
opportunity to comment on the legislation. My brief comments
today will present an overview of our impressions of the proposed
act.
The association's interests
in Bill 159 relate to the following three objects: (1) the
interests of our members as practising optometrists; (2) the
principles of privacy legislation in general; and (3) the
public's expectation of confidentiality in matters of health
care.
Most people would consider
health information as the most private of all personal
information. In our analysis of the bill, the association used as
criteria the basic principles and guidelines for general privacy
legislation established by the Canadian Standards Association in
1996. We understand the federal government, as the basis for
federal privacy legislation, has adopted these guidelines. You
may be aware of them, but I'll just read them again.
The eight guidelines are
the following: (1) accountability for abuses or breaches of
confidentiality; (2) demonstration of a purpose for the
information; (3) consent for collection and disclosure of
information; (4) limit the collection, use and disclosure to a
demonstrated purpose; (5) maintain accuracy of information; (6)
safeguard information; (7) ensure openness of collection
practices; and (8) provide individual access to information.
Generally, the association
has determined that the proposed bill is consistent with the
basic tenets of the federal guidelines on use, collection and
disclosure of personal information.
Additionally, the
association notes that the changes to the previous draft
legislation have addressed some of the concerns expressed in our
initial and subsequent responses to the early drafts. These
concerns were mostly that the requirements for the collection,
use and disclosure of health information should not interfere
with the normal and usual process for the transfer of health
information within the health care system and between health care
practitioners.
Furthermore, the
association wanted to ensure that any requirements under new
legislation, additional to patient confidentiality requirements
under regulations in the Optometry Act, would not create
obstacles for the efficient delivery of patient care. Presently,
optometrists are required to maintain the confidentiality of
patient health information through professional misconduct
regulations under the Optometry Act. The regulations not only
restrict the release of patient information to anyone without the
consent of the patient, but they also require patient access to
the information upon request.
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The three broad optometry
regulations effectively ensure the privacy and disclosure of
personal health information in the control of the optometrist or
other health care practitioners. The association is unaware of
any evidence that the Regulated Health Professions Act, 1991, has
been ineffective in maintaining confidentiality of patient
information.
Bill 159, among other
purposes, creates specific circumstances in part VI where health
information custodians may disclose personal information without
the patient's consent. This provision in the bill therefore
expands the criteria for disclosure from the present exemption
for optometrists, that is, as required by law, to several
categories of disclosure requirements. Consequently, the public
will have somewhat less assurance of privacy than under existing
legislation.
Even though much of the
bill is acceptable to the association, we have identified four
specific sections of the bill that merit further comment. These
sections are, first, sections 30 and 31, which require that a
health information custodian disclose personal health information
upon the direction of the minister. Although the minister is
obliged to consider the public interest and the privacy interests
of the individual, and the privacy commissioner is to be
consulted in the process, our interpretation of the section
suggests that the minister has independent authority to direct
and require compliance.
The bill purports to confer
powers to the privacy commissioner, however the commissioner's
role is more of an adviser. If the commissioner considers that a
direction is inappropriate, there appears to be no mechanism in
place to influence ministerial discretion, provided that the
direction is consistent with the purpose of collection and
disclosure.
While access to information
that is necessary for effective management of the health care
system is important for the government, the guiding principles of
accountability and consent should not be overlooked.
The association questions
the need to disclose the identity of individuals for the purposes
of health management and research. Anonymous information should
be sufficient to accomplish the objects requiring disclosure.
Perhaps the committee can consider a mechanism for the review and
approval of a ministerial direction through a body with some public
accountability, similar to the proposed research ethics review
body.
Secondly, section 32, in
part, establishes by regulation a research ethics review body
responsible for the approval of the disclosure of personal health
information for research purposes, and subsection 76(1),
paragraph 15, designates "a body or a class of bodies as a
research ethics review body for the purpose of section 32."
However, the paragraph is non-specific as to the composition of
the review body. As an assurance of public accountability, and to
ensure that health information is collected and used
appropriately, the association recommends that there should be
some statutory requirement for representation from the public
sector on a research ethics review body.
Thirdly, subsection 47(1),
in part, requires that a fee accompany a written request for
access to personal health information. The association supports
this provision. The requirement for a fee to accompany the
request for access to a record will protect practitioners from
patients who refuse to pay a fee once they have obtained their
records. The establishment of a reasonable fee will be difficult
considering the various health information custodians and the
variety of records. We anticipate that the profession will retain
some autonomy in the determination of fees for record access and
transfer.
Subsection (4) of the same
section, and part II, subsection 11(2), appear to exempt the
requirement for non-disclosure under the authority of the
Regulated Health Professions Act, 1991.
The association recommends
that the provisions for non-disclosure in proceedings under the
proposed bill be extended to the quality assurance program under
the RHPA. It appears that under Bill 159 there are requirements
for non-disclosure of evidence in proceedings, but that doesn't
apply to the RHPA in quality assurance programs. We would like to
see that apply universally under the requirements of Bill 159.
The association recommends that the provisions for non-disclosure
apply as well to the RHPA.
In summary, with the
exception of certain specific disclosure requirements, the
association is satisfied that Bill 159 offers adequate protection
of privacy for personal health information. The proposed act is
unusually comprehensive compared to present confidentiality
requirements under profession-specific acts. New rules for
access, use and disclosure will unfortunately create additional
administrative responsibilities for practitioners over and above
the requirements under present regulations. Consequently, all
health information custodians will require considerable knowledge
and understanding of their responsibilities under the new
legislation or risk significant penalty.
The challenge for both the
Ministry of Health and Long-Term Care and health care
professional organizations will be the task of educating health
information custodians on their broadened responsibilities. The
association is prepared to assist our members with compliance to
their expanded requirements.
Thank you for your interest
and attention.
The Chair:
That leaves us just under three minutes per caucus for questions.
This time we'll start with Ms Pupatello.
Mrs Sandra
Pupatello (Windsor West): Thanks so much for your
presentation. Could I understand from your remarks that the
powers within the RHPA with the colleges in terms of their
investigative powers etc-you can see the need to keep that level
of access for the colleges and that's the level that ought to be
in Bill 159?
Dr Nicol:
The comment I made was related to the requirements for
practitioners to maintain confidentiality and access to records
for patients. However, if I understand your question, your
question is what powers will a college have with respect to
obtaining information directly.
Mrs
Pupatello: Several of the colleges have come forward to
say that it literally clips their wings in terms of their mandate
and what they're supposed to do, and that is, ensure the quality
of service delivered by their professionals. They need these
access powers in order to do proper investigations, and it's
essentially clipped with Bill 159. It makes one essentially
redundant.
Let me ask you about some
comments you made regarding the commissioner and the role of the
commissioner. Just to emphasize, many of those who have come
forward suggest that, if 159 passes, the role of the commissioner
would be very restricted in a number of ways. I don't know how
practical it would be, but it seems to me if the commissioner
could actually vet all of these health custodians' requests in
terms of access and flip the responsibility around so that while
they're listed as custodians, their request to information still
needs to be vetted by the commissioner, that may be of
significant comfort to everyone who realizes the number of people
who are listed as custodians. While they're listed, they still
don't have the power unless the commissioner approves the access
and/or disclosure of health records. Do you have a comment on
that?
Dr Nicol:
I would support that. I would support giving the privacy
commissioner more authority. However, as I read the bill, it
doesn't appear that the commissioner has any authority over
ministerial directions at all. It's only to act as an adviser and
comment on it. So there don't appear to be any checks and
balances on the minister's power.
Mrs
Pupatello: I guess we're going to hear again later from
the Ontario commissioner, but she made her point fairly
strenuously when she appeared here a couple of weeks back. It
would take a significant rewriting of the role of the
commissioner within Bill 159.
Ms Lankin:
Thank you for your presentation, Dr Nicol. I think you hit the
nail right on the head when you talked about the lack of power
vested in the commissioner to oversee this legislation, to
enforce this legislation, combined with the very broad
discretionary powers of direction to disclose which the minister
has within this bill.
I understand the premise of
Ms Pupatello's question. We could ask Dr Cavoukian herself, but
there are millions of
requests for access to information every year and it would take
perhaps the Ministry of Health's size doubled and half of it put
with the privacy commissioner to accomplish that. But having said
that, the rules as they're set out-and we've heard this over and
over from people-are much too broad. They need to be tightened
and the commissioner needs to be given new powers.
I wondered if I could ask
you about your proposal that perhaps, even with tightening the
rules, there should be some oversight body that reviews the
minister's directions to disclose. You suggest it could be an
independent, arm's-length body. One of the things I'd worry about
is that the whole world of health is kind of an incestuous world.
Those of us who spend a lot of time in it know the lingo, get the
sense of it, and we're quite expedient in terms of our thinking
that certain pieces of information are needed for certain
research or for systems management, yet that's not the public's
point of view. Do you think you could actually put together an
oversight body like that which wouldn't get drawn into the world
of health, or do you think it's best to leave that oversight
power with the privacy commissioner, whose sole focus, of course,
is dealing with information, both freedom of information-to
access it-and protection of privacy, where it should be
protected?
1040
Dr Nicol:
Not to create additional bureaucracy, if the privacy commissioner
has the expertise and authority to oversee some of the powers of
the minister, I think that would be quite satisfactory. In the
alternative, you could create another body, but if the minister's
direction involves a lot of requirements, as you say, that's
going to make a lot of work for another body.
Ms Lankin:
One of the things we've heard over and over again is that health
information belongs to the individual. It's our private health
information and we have a right to have access to that. In your
brief, you present support for the fact that there should be a
fee to accompany a request for access to patient records and that
the health profession should retain autonomy over the
determination of that fee. We've heard very significant
presentations here about how fees can be a real barrier to access
and that in fact there should be a statutory system that not only
keeps it affordable and accessible, but has measures for waiving
fees altogether. I worry about your suggestion that health
professionals should retain autonomy. That could lead to
differences from doctor's office to optometrist's office to nurse
practitioner's office. Could you comment on that?
Dr Nicol:
Usually the practitioners will determine what fee is reasonable
for services they provide. I think some access to records or
information may take a lot of time and involve a lot of work on
behalf of the practitioner, and some others may just be writing a
note and giving that to the patient. If you have a fee
established by someone else, then practitioners may not receive
adequate remuneration for those services they're providing. I'm
not suggesting there should be a fee that would prohibit access
to information by patients, but considering the services that
practitioners provide, there should be some fair remuneration for
those services.
Ms Lankin:
I guess it's a question of whose record it is, the patient's or
the practitioner's.
Dr Nicol:
It's the patient's.
Mr Wood:
You've made some comments in your submission about oversighted
research. One model we could consider would be to say that the
final sign-off on all research projects where you're accessing
information without consent is the privacy commissioner. Is that
a model that appeals to you?
Dr Nicol:
Yes.
Mr Wood:
Let me share with you something we've heard. I'm not saying it's
right or wrong. Ultimately, we're going to have to decide whether
or not we agree with this submission. Some researchers have said
that because of small sample size, there are certain kinds of
research you can't do if you require consent. If we find
ourselves persuaded by that argument, that there really are
research projects of that nature, we've either got to say, "You
can do these without consent, subject to proper oversight," or,
"You can't do that kind of research in Ontario." If we reach the
point where we're faced with that decision, which side of that
would you come down on?
Dr Nicol:
As long as there are sufficient checks and balances on the
disclosure of information without consent, and it's absolutely
necessary, then I'm in favour of that. But as I see it now, as I
read the bill, it doesn't appear to be that. Although there is an
ethics review body, I don't see where the constitution of that
body is clear. Are you suggesting that the commissioner, then, be
an overview for the release of that information? That's
satisfactory.
Mr Wood:
The proposal, I think, is to set up the composition by
regulation. The government is going to say, "Here's how these
have to be composed." It does, however, raise the question, who
exactly are these people? To whom are they accountable?
Dr Nicol:
That's my question. That's right.
Mr Wood:
An answer to that, which I gather from your previous answer
appeals to you, is, "We'll make it a public official, who after
all is accountable to the Legislature, is confirmed by the
Legislature when he or she is appointed." I gather you find that
kind of public official to be a better final sign-off person than
simply people who would be appointed under regulation.
Dr Nicol:
Yes.
Mr Wood: I
gather you ultimately would do the research and take the
information rather than decline to do certain types of research
in Ontario, if we reached that point.
Dr Nicol:
I'm sorry, I didn't understand that question.
Mr Wood:
If we got to the point that I described earlier, where you've got
to decide, "Either we're not going to do the research in Ontario
or we're going to permit disclosure without consent," you would,
in the right circumstances, permit the research to proceed.
Dr Nicol:
Permit it to proceed, provided there are checks and balances on
that disclosure, yes.
The Chair: Thank you very much for
coming before us here this morning. We appreciate it.
OMBUDSMAN ONTARIO
The Chair:
Our next presentation will be from Mr Clare Lewis, the Ombudsman
of Ontario. Good morning and welcome to the committee.
Mr Clare
Lewis: Thank you, Mr Gilchrist, members. If I may, Ms
Laura Pettigrew, counsel in my office, is with me. She might be
needed.
Thank you for receiving me
this morning. It's a pleasure to be before you. I can tell you
that I expect, subject to any questions you may have, to be
somewhat less than 10 minutes.
I'm very much a one-trick
pony in this appearance. I am here to seek the removal of
ambiguity regarding an authority which I believe I have under
this act but is unclear. As a matter of principle, I generally
support the jealous guarding of personal health information, but
I do have a specific concern regarding Bill 159 as it relates to
my office and my investigative authority. Although I recognize
the need for and support having clear rules respecting the
privacy of personal health information, it appears that the
proposed legislation may impair my ability to conduct
investigations of provincial governmental organizations.
As you know, I have the
authority to conduct investigations relating to a broad range of
provincial governmental organizations including the Ministry of
Health and Long-Term Care and agencies such as the Health
Professions Appeal and Review Board and the Health Services
Appeal and Review Board. Provincial correctional facilities,
which include health care units, also come within my
jurisdiction. Relevant personal health information, including
third party information, is often obtained in the course of my
investigations of provincial organizations. I frequently conduct
investigations on my own motion, particularly in cases involving
systemic or system-wide issues impacting a large group of
individuals. In these circumstances, it is critical that I have
full access to relevant personal health information without the
need to obtain consent.
The Ombudsman of necessity
has been given broad statutory powers of investigation. It is
fundamental that I continue to have full access to personal
health information in order to fulfill my role and ensure that
government is accountable in its administration. To be truly
effective, an oversight body, including, I might add, the
Information and Privacy Commissioner, requires legislative
authority to conduct thorough investigations relating to the
issues within its mandate to consider. I note an anomalous
departure from that principle in that under the Freedom of
Information and Protection of Privacy Act and Bill 159, the
Information and Privacy Commissioner is not empowered to conduct
full investigations into matters relating to privacy complaints.
In the case of my office, while I have statutory powers of
investigation, I am concerned that my authority will be
restricted as a practical result of Bill 159.
I would like to assure the
committee that I appreciate the sensitivity relating to personal
health information. However, the Ombudsman Act and regulations
contain strong confidentiality provisions to ensure that the
information obtained in my investigations is not unnecessarily
disclosed. I took an oath of confidentiality when assuming office
in accordance with subsection 12(1) of the Ombudsman Act. Every
member of my staff is bound by my obligations of confidentiality.
Subsection 18(2) of the Ombudsman Act requires that my
investigations be conducted in private and section 2 of
regulation 865 provides that neither my staff nor I can disclose
information to third parties except when permitted by the
act.
1050
My office is also not an
institution subject to FIPPA. Accordingly, members of the public
cannot obtain disclosure of information within my custody and
control through an access request to my office under FIPPA.
It will no doubt be argued
that clauses 36(1)(h) and (i) of Bill 159 permit my office to
obtain information, as disclosure is permitted to a person
carrying out an investigation authorized under an act of Ontario
or if required under an act of Ontario. However, allow me to
advise you of my office's practical experience with FIPPA, the
Freedom of Information and Protection of Privacy Act. Based on
this experience, I believe that the interaction between Bill 159
and the Ombudsman Act will lead to my office having increased
difficulty accessing relevant personal health information.
FIPPA was amended in
January 1991 to delete reference to the Ombudsman's office in a
section permitting disclosure of personal information for certain
purposes. At that time, the reference to my office was considered
redundant in light of the general exemption in that legislation,
FIPPA, authorizing disclosure for the purpose of complying with
an act of the Legislature. A memorandum in support of that
principle from the director of the freedom of information and
privacy branch, Management Board of Cabinet, to all information
and privacy officers of government dated November 18, 1991,
confirmed that the Ombudsman continued to be authorized to
require access to personal information. In addition, on June 19,
1992, the Information and Privacy Commissioner, then an assistant
commissioner, responded to a complaint concerning disclosure of
personal information to my office by finding that the disclosure
was indeed permitted under FIPPA.
Despite the information
from Management Board of Cabinet and the Information and Privacy
Commissioner's office and the section of FIPPA which permits
disclosure to my office, I continue to experience resistance when
attempting to obtain access to information, particularly personal
health information, without formal written consent from the
individual to whom it relates. It is a credit to those officials
who resist my requests that they are attempting to follow the
rules and exercise due caution, but they do so incorrectly and
based on a misconception of the law, in my respectful
opinion.
Unless Bill 159 clearly refers to disclosure to
the Ombudsman being permitted, and there is no room for
ambiguity, I foresee, based on my office's past experience, that
I will face resistance in my investigations involving personal
health information.
I note that in section 36
of the proposed legislation, reference is made to a number of
organizations to which a health information custodian may
disclose personal health information. In order to ensure that I
continue to have the necessary access to relevant personal health
information, including third party information, without the need
to obtain consent, I believe that specific reference should be
made in the proposed legislation to my office being permitted
disclosure.
Accordingly, I believe it
is necessary that Bill 159 expressly provide that a health
information custodian may disclose personal health information
without consent to the Ombudsman for the purpose of enabling me
to carry out my functions under the Ombudsman Act. The best way
to accomplish this, in my view, is to add a separate section to
the legislation, in part II, which addresses the application of
the act, stating, "Nothing in this act shall apply to prevent or
restrict disclosure of personal health information to the
Ombudsman of Ontario."
I believe that the
confidentiality provisions in the Ombudsman Act and the integrity
of my investigative process strike a balance between the public
interest in having an Ombudsman with the right of access to
personal health information and the private interests of
individuals in having their personal health information
protected. I believe that Bill 159 intends to preserve that
balance. However, my own experience has shown that in the very
sensitive area of personal health information, any legislative
uncertainty will inevitably lead to challenges to my
investigative authority.
Thank you for your
consideration. I would be pleased to receive any questions you
may have.
The Acting Chair
(Mr Toby Barrett): Thank you, Mr Lewis, for that
presentation. That would leave about three minutes for each
caucus.
Mr Lewis:
I must have underestimated my time.
The Acting
Chair: Extra time for questions.
Mr Lewis:
Oh, for each caucus. That's not bad.
The Acting
Chair: For each caucus. Ms Lankin, any comments or
questions?
Ms Lankin:
Absolutely. Thank you very much. Welcome, Mr Lewis and Ms
Pettigrew. I appreciate the point that you have drawn to our
attention. It parallels in some ways the concerns that the
regulated health professionals' colleges have raised with us,
their concerns that the construction of the bill may interfere
with their duty and obligation right to investigate in certain
circumstances. The ministry has assured us that it was not their
intent, and I think you recognize that it would not be their
intent, to interfere with your powers at all. I believe there is
a way that we can construct the bill that will address those
concerns.
Having said that, I have a
couple of questions. Could you give us some examples in terms of
the kind of complaints that you may have received and
investigated in the past that actually required you to look at
personal health information as opposed to facility procedures or
policies?
Mr Lewis:
Yes, indeed, I can. I could use the correctional institutions as
an example, and I deal a lot with those. Health care is a very
real issue in those institutions and we do receive complaints of
inadequate health care which must be investigated. On occasion,
there is a need to do an investigation on a system-wide basis to
determine if the type of health care that the institution is
claiming is being granted is being granted generally or not. In
order to ascertain that, I need to look at the health records of
other persons who have been incarcerated in that or other
institutions in order to make a comparison of the complaint. The
fact that I look at it does not mean that it will be revealed.
I'm quite capable of anonymizing, I think is the word, any
information I receive.
Ms Lankin:
Let me just ask you: could it be anonymized before you look at
it?
Mr Lewis:
It wouldn't bother me, as long as I had assurance that it was an
accurate record of another individual that I needed to look at in
order to make comparisons. Yes, I believe so.
Ms Lankin:
The proposal that you've put forward to us in terms of a
recommended amendment-and it may work in that construct, at least
the idea behind it-have you had a discussion with the privacy
commissioner about that and is she comfortable with your
recommendation?
Mr Lewis:
I have spoken to the privacy commissioner and I'll certainly have
to leave it to her to comment on it, but I felt as a courtesy I
needed to go before her and to find out what her opinion would be
because I didn't want to transgress. I don't think she's
uncomfortable with it. I think she is comfortable, but please ask
her that question.
Ms Lankin:
We'll do that.
Mr Wood:
If we were to accede to your request, there are a few issues that
arise from that and I'd like to get your reaction to a few issues
that we might have to address. Suppose we allowed access without
consent with a sign-off by the privacy commissioner. What would
you think of that?
Mr Lewis:
It's an interesting jurisdictional issue. We officers of the
Legislature don't often find ourselves subject to being approved
by the other, but it's something I would certainly consider and
I'd be willing to get back to you on.
Mr Wood:
What about sign-off by the courts?
Mr Lewis:
I think that's more cumbersome. There have been occasions in the
past, I believe, when we've come very close in our office-not
during my time-to actually going to the courts to assert our
jurisdiction. We think it's there under FIPPA and we think it's
there under this act, but it's not well recognized as there. I
would be prepared, if necessary, and in a significant enough
case, to take the matter to a court to assert my jurisdiction.
But I wouldn't think that we'd want to go to the court on a
regular basis because I know you know, sir, how expensive and resource-intensive
and lengthy that process can be. The Information and Privacy
Commissioner would be preferable, in my view, and in fact much
more expert.
Mr Wood:
There are a few restrictions we might place on your ability to
access information without consent. For example, a third party
might have to decide it was a needed investigation. The courts or
the privacy commissioner might have to decide first whether or
not it's a needed investigation.
Mr Lewis:
I would take some considerable exception to that. That has never
been the expectation of this Ombudsman Act or any other that I'm
familiar with in the western world, that the courts make the
determination whether an investigation is necessary. I'm subject
to the Legislature and the Legislature can certainly tell me if
they think that I have erred in initiating improper
investigations. But I don't believe that I would agree with your
proposition that the courts ought to look at that.
1100
Mr Wood:
What about you not being able to access more information than is
needed to achieve your purpose? In other words, a third party
decides what that is, that you don't decide yourself.
Mr Lewis:
The Ombudsman is supposed to be the oversight agency on
governmental organization. The Legislature has granted the
Ombudsman a certain degree of integrity and capacity to make
those decisions, just as has been granted to other officers of
the Legislature, such as the Provincial Auditor, the elections
commissioner and so on. I think what you're saying is who shall
watch the watcher.
Mr Wood:
That's right.
Mr Lewis:
I used to be the police complaints commissioner in this province,
too, and while I had to take my slings and arrows in the public
forum, and I would as Ombudsman before this House, I don't
believe that that encumbrance would be appropriate. In fact, I
think it would undermine the concept of the Ombudsman very
significantly.
Mr Wood:
Who would you suggest should guard the guard?
Mr Lewis:
You. I report to you. I report to you through the Speaker. I
appear before the standing committee of the Legislative
Assembly.
Mr Wood:
That's hardly a practical matter in each case.
Mr Lewis:
In each case?
Mr Wood:
How often do you report to the Legislature?
Mr Lewis:
I report annually, but I have instituted an appearance before the
standing committee on a quarterly basis and I would go on any
occasion that they requested.
Mr Wood:
What about a restriction that you can't access information if
your purposes could be achieved with anonymized information?
Mr Lewis:
I'm sorry. Would you repeat that?
Mr Wood:
We could put into the statute a provision that you can't access
information if you could achieve your purpose with anonymized
information.
Mr Lewis:
I'd still be accessing the information, but I'd be accessing it
in an anonymized fashion. Yes, I think I've agreed that it is
perhaps possible. I would request that that be third party
information, not the information of the complainant who I am
supposedly investigating for at that point.
Mrs
Pupatello: A quick question for you, Ombudsman. It was a
pleasure to listen to your presentation today. The experience
I've had with your office-and we have many constituents we refer
to the Ombudsman-is that you currently have lengthy
investigations and it's never an overnight response, for a whole
bunch of reasons. One, I think, is resourcing to your office and
satellite offices. Is the reason for the significant delay today
in some of your investigations due to this difficulty in
access?
I guess I'll preface that
by saying throughout these proceedings I think the general public
is becoming aware of a number of people who have been able to
access records already that we frankly weren't aware of, but
through virtue of their mandate they can access, and yours may
well be one of them. I didn't realize the difficulty that you've
had historically in gaining access. Does that cause considerable
delay?
Mr Lewis:
Perhaps I could divide the layers that I think you've raised. We
do in certain individual cases in which we have required personal
health information of third parties experience delays of
significance because of resistance within the ministry. But I do
not think our investigations as a whole are any longer under
considerable delay. A huge number, over 75%, of our cases are
completed within six days.
Mrs
Pupatello: For those that are delayed, are-
Mr Lewis:
There are some that are, but we don't have a backlog. Some of
these investigations are extraordinarily complex. They really
are. I can only say that I'm not trying to lay any delays which
are perceived in my office on this issue other than those very
few cases-and very significant cases-in which I am denied and a
lot of time is taken by me and the ministry in trying to work out
the problem.
But I'd like to say, in
conclusion, if I may, that I think the act provides me with the
authority that I'm asking, but it's not understood to provide me
with that authority. I don't want to have to go to court to get
it. I don't want to have to keep negotiating these matters,
because that's where delay occurs.
Mrs
McLeod: If I may, I think the point that you're making
is even more important for us to consider if we proceed to make
amendments to Bill 159 as it's written. Ms Cavoukian's
recommendations for amendments are around 36(1)(h), which I think
you say would be the right way-
Mr Lewis:
It would be one way of doing it. I also recommended putting it in
part II as a separate statement.
Mrs
McLeod: I think that recommendation is something the
committee should look at very seriously, if we proceed to change
that clause (h), which I personally think is far too open in
terms of-
Mr Lewis:
I understood that.
Mrs McLeod: The recommendation
from the privacy commissioner would restrict-as I understand it,
clause (h) would now read, "If required for the purpose of an
investigation under or enforcement of an enactment of Ontario
respecting payment for health care, or ... respecting a fraud
relating to payment for health care," which might indeed shut the
Ombudsman's office out if we didn't include it specifically
somewhere else in the act.
Mr Lewis:
That's right.
Mrs
McLeod: I think we do need to look very seriously at
that.
The Chair:
Thank you for that presentation, sir.
INFORMATION AND PRIVACY COMMISSIONER/ONTARIO
The Chair:
Our next presentation is from the Ontario Information and Privacy
Commissioner, Dr Cavoukian.
Dr Ann
Cavoukian: Good morning, Mr Chair and ladies and
gentlemen. I am very pleased to have this second opportunity to
address the committee regarding Bill 159. I would like to use
this opportunity to reinforce the main points from my first
presentation and to respond to some of the comments made by the
other stakeholders.
Let me begin by saying that
I support the many voices that have called for health information
privacy legislation. My office has been advocating the need for
such legislation, as you know, for a number of years, since the
inception of our office in 1987. Along with many other
stakeholders, we've been waiting for the introduction of this
type of legislation since Justice Krever's report on the royal
commission on confidentiality of health information in 1980, over
20 years ago.
However, the need for
health privacy legislation has, in my view, never been greater,
especially with the increasing electronic exchanges of health
information. I was looking, just anecdotally, at a survey that
crossed my desk, Computing in the Physician's Practice, which
looked at the electronic uses of information by physicians. It
said that more doctors are communicating by e-mail with both
professional colleagues, up to 55%, and support staff, up to 34%.
This includes the transmission of some clinical data. This takes
place without any standardized rules or controls. Again, we need
this legislation, despite the fact that it is extremely difficult
to get right. In my 14 years with this agency, I have personally
witnessed at first hand the repeated but failed attempts to
introduce this type of bill.
Despite the fact that we
are in such serious need of legislation of this kind, we cannot
accept a bill which is widely acknowledged as being seriously
flawed. Bill 159, in its current form, is without a doubt a
flawed bill. In fact, the bill is so flawed that the federal
Privacy Commissioner, Mr George Radwanski, has called for it to
be scrapped and the process to start anew. Despite the fact that
I may disagree with him, I can certainly understand why he would
take such a position. Bill 159 needs a major overhaul, not simply
a little bit of fine-tuning.
But perhaps the term carpe
diem-"seize the day"-may never have been more appropriate than
now. The current opportunity to provide Ontarians with privacy
protection for their most sensitive information may be lost if we
don't act now, because the process of balancing competing
interests is not going to get any easier the next time around.
There's no reason to think that something's going to magically
change. This is the first time that a health information privacy
bill has ever made it thus far: to the stage of actually being
introduced as a bill in the House. So let's try to take advantage
of that.
Let me be perfectly clear,
however. While I am very much aware of the danger of missing this
opportunity before us, I cannot support the passage of Bill 159
in its present form. While it may not be fatally flawed, it is
most certainly fundamentally flawed. This bill must be
substantially rewritten to provide the types of protections for
health information that the public expects and deserves. There is
also the danger, again raised by the federal Privacy
Commissioner, that this bill will not be deemed to be
substantially similar to the new federal private sector privacy
legislation, an outcome clearly to be avoided.
1110
I've already offered the
resources of my office to work with the ministry until the
concerns raised about the bill have been addressed. We are very
committed to working with ministry officials to make this a truly
privacy protective bill. To this end, my office has already
tabled with the committee both a written submission and a list of
proposed amendments that we drafted, which are also accessible on
our Web site. These documents represent our starting point for
discussion. What we need now is a serious commitment from the
government to undertake a significant redrafting of the
legislation. Without this commitment, I would have no choice but
to withdraw my support for the legislation.
Let me now turn to my major
areas of concern with the bill. I'll simply touch on these three
areas today.
One of the most glaring
areas in need of attention is the broad disclosures of personal
health information permitted without the consent of the
individual. This must be changed.
One of the basic premises
of this legislation, as outlined in section 28, is that the
consent of the individual should generally be obtained before
personal health information is disclosed. However, the
legislation contains numerous provisions for the use and
disclosure of health information for a wide array of purposes
without the consent of the individual. In fact, under this bill,
individuals would have very little control over the collection,
use and disclosure of their personal health information.
Let me turn to directed
disclosure, section 31. Under Bill 159, the government could
direct health custodians to disclose any health information to a
third party for a wide range of purposes related to the
management of the health system. This could be virtually anything
and is clearly far too sweeping a power. Because we've seen no
convincing evidence from the ministry that it requires such broad powers in order to
collect information needed for planning and administrative
purposes, I ask that the directed disclosure provisions be
removed from Bill 159. Just take it out, full stop.
Let me talk briefly about
regulation-making power under Bill 159. The extent to which this
legislation creates regulation-making powers is very disturbing
to us and it is one area that requires significant amendment.
While we understand that some matters must of course be left to
regulations-it is neither practical nor desirable to include
every minute detail in the body of the legislation-this bill goes
too far. Our review indicates that at almost every key
decision-making point, the bill includes the ability to deviate
from the established rules by way of regulation. In almost every
part of the legislation, key issues are left to be addressed
later in the regs, again leaving far too much to be decided at a
later date in a non-public forum, without opportunities for
debate. Overall, the proposed legislation provides the Lieutenant
Governor in Council with the power to make regulations in 30
areas. But it's not just the sheer volume of the regulations that
gives us cause for concern, but also the scope and the
significance of the matters that are left to be addressed at a
later time. The regulation-making power, in short, must be
narrowed.
Finally, I'm going to touch
briefly on the powers of the commissioner, or lack thereof. Part
XI, which sets out the oversight and enforcement regime relating
to personal health information, raises a number of serious
concerns for my office. This part establishes the powers of the
commissioner to review complaints under the legislation and to
conduct inquiries into complaints about access and correction of
personal health information. The provisions in Bill 159 are
totally inadequate and fail to provide Ontarians with an
effective oversight of their most sensitive information.
I respectfully recommend
amending the legislation to ensure that the commissioner's office
has clear and explicit powers to do the following: to investigate
all complaints; to review decisions of custodians that relate to
requests for the correction of one's personal information-this is
very important; to conduct privacy audits to ensure compliance
with any provision of the act. Without these powers, my office
will not be able to effectively carry out its mandate, and many
of the public's rights and protections provided under this
legislation will be virtually unenforceable.
I should also point out
that the federal Privacy Commissioner, Mr Radwanski, possesses
these investigatory powers now under Bill C-6, and the absence of
these powers in Bill 159 would, I think, serve as a further
obstacle to obtaining a determination of being substantially
similar with the federal legislation.
When I spoke to this
committee last month, I concluded by urging you not to withdraw
this bill but rather to make significant amendments to it. Today,
the same bill remains in front of the committee for
consideration, yet there have been no assurances that significant
amendments will be made. I will, therefore, conclude my remarks
today by saying that unless fundamental changes are made, I
cannot support Bill 159. I ask that you consider the detailed
recommendations my office has made in our written submission and
the draft language we've proposed for amendments to the bill.
I thank you very much for
your consideration, and I'd be pleased to answer whatever
questions you may have.
The Chair:
That leaves us about three minutes per caucus. This time, we'll
start with Mr Wood.
Mr Wood:
We've heard a good number of suggestions over the past couple of
weeks and a few of them have been to give you some functions you
don't have now. I want to get some reaction from you as to
whether you might be able to be helpful in these areas. One thing
we could do, in circumstances where access is going to be had for
research purposes without consent, is to give ultimate sign-off
to your office so that each of these projects would be reviewed
by, say, an ethics committee, and then it goes to you, who
obviously would set the ultimate policy and determine that it was
applied in each case. Is that something you think your office
could do?
Dr
Cavoukian: I think it would have enormous resource
implications, Mr Wood. The sheer volume of the projects that
would come before us and the expertise we would be required to
obtain in order to properly assess such requests would create a
lot of resource implications. It's something we would certainly
consider. My preference would be to develop some type of
guideline that would outline what the privacy considerations
would have to be that research ethics review bodies would have to
consider.
I think they're very good
at what they do in assessing the merits of the research before
them, in terms of how worthy it is of the research being
contemplated, but I don't think privacy is something they have
much expertise in. We could draft a set of guidelines that we
could not only distribute but perhaps hold a workshop or have
some way in which we could train existing research ethics review
boards and thereby give the benefit of our expertise on privacy
to them and have that incorporated into their practices.
On the face of it, that
would be my first response. I understand the federal Privacy
Commissioner doesn't have sign-off on research matters either.
Matters go to him and he must be informed of various research
activities, but he does not have sign-off. That would be my first
reaction.
Mr Wood:
For time considerations, let me jump to another issue. One thing
we could do is require your sign-off on directed disclosures.
What would be your reaction as to your ability to do that?
Dr
Cavoukian: It's certainly something we would consider.
My first request, as you know, is to eliminate the directed
disclosure, because from our perspective we have not been
convinced of the need for it. In order for us to understand the
need, we would have to have a better understanding of the
ministry's reasons for wanting it. We have been exposed to them.
It's not that this has taken place in a vacuum. We have different
perspectives on the
need for this information. It's certainly something we would
consider. I'll just reiterate that our preference would be to
eliminate the directed disclosures, but certainly narrow them, if
not-
The Chair:
Sorry, Mr Wood. We have to move on.
Mrs
McLeod: I wish we had more time with you, and I trust we
will have an opportunity to spend more time with you as we get
into the amending process. It's hard to know where to focus a
question in three minutes.
1120
I want to note that in your
recommendations you've recommended deleting section 12(8), which
is the exception on limitations. I'm not going to ask you about
that, Ms Cavoukian. I just wanted to note it because I think it
goes hand in hand with the recommendation on deleting the
directed disclosures and also the circumscribing of regulatory
powers and not having access to records without a subpoena.
Although I'd like to
discuss all of those things with you, what I wanted to focus on
is your recommendation around what I interpret to be a lockbox in
section 29(1)(a), that information can be provided etc unless the
individual has instructed the custodian not to make the
disclosure. I think this is one of the issues that we're all
anguishing over, perhaps more than any other single issue. We're
hearing from health care providers and others that there are
circumstances in which they need to have access to a record, they
will argue, for the protection of the individual-but doesn't the
individual own the record?-but perhaps of even greater concern,
for the protection of others, whether it is somebody who has a
physical condition which could put a health care provider at risk
or whether, in the case of a mental health condition, it could
put people in the larger community at risk. Could you comment on
how we deal with those very real concerns?
Dr
Cavoukian: From a privacy perspective, the notion of a
lockbox or some method in which an individual can control and
prevent the disclosure of some information is very important. It
maintains control over the uses of one's most sensitive
information in the hands of the individual. Privacy hinges on the
ability to control such uses of one's information.
Having said that, I
recognize your concerns and I'll speak first to physicians'
concerns, which are very legitimate. They feel that if they don't
have access to everything, their ability to treat a patient may
be impeded in some way. They may not be aware of some critical
information, which a patient may not know is critical but a
physician would be able to set. Having said that, I think arguing
in favour of a lockbox comes with a bit of responsibility that
has to be taken by the individual to accept the consequences of
placing such information in a lockbox. There has to be that
understanding that you might place yourself at risk by placing
certain information in a lockbox, and you accept that risk.
With respect to danger to
others, I've always been a very strong advocate of universal
health care precautions which people in emergency units, the
police and others are trained in and advised to use in dangerous
situations. The reason I say that is that it's not that there
isn't a legitimate need on the part of such individuals-if they
happen to be in an accident, or something has taken place, and
they are concerned about having contracted something-but it's the
ability to know with any certainty about the medical conditions
the individual from whom the disease in question, or whatever,
has been communicated. It's virtually impossible to know what
conditions that individual may have.
I'm going to use the
example of HIV. I know it's been raised earlier. In order to know
if someone has HIV, you have to have a positive finding. Many
times, that doesn't exist, so there isn't one source you can go
to and find if this individual has an HIV-positive status. You
won't get that determination, generally speaking. Most people
either haven't been tested or they've been tested anonymously or
that finding won't reside with whoever it is you're asking. The
ability to get an accurate answer to that question by going to
some health care provider or some health source is very limited.
So my response would always be, use universal health precautions
and, if you're concerned about having been exposed, do what you
need to do to protect yourself, because you're not going to have
a definitive answer. Obtain the treatment you need. Assume that
you may have contracted it and protect yourself, because a
definitive answer is simply not going to be available. It doesn't
matter where you go to access the information. That's my long
answer to your question, Mrs McLeod.
Mrs
McLeod: I suspect that it's also my time, Mr Chair.
The Chair:
More than so.
Ms Lankin:
I want to primarily talk about process from this point out. I
think-and I'll speak for myself-I have been convinced, and I
suspect from the questions and comments Mrs McLeod and Mrs
Pupatello have made, they've been convinced, and other members of
the committee, that we need to deal with the issue of the powers
of the commissioner, we need to deal with the issue of unfettered
regulation-making powers, we need to tighten up or eliminate
directed disclosure-something has to happen there-and the issue
about greater control by the individual. I think the extent to
which that goes is still something we are all struggling with. I
really do appreciate your comments about seize the day. Every
group that has come forward has said, "We need this legislation."
They may have said, "Scrap it, rewrite it," but "We need the
legislation." We do not want to miss an opportunity to put our
minds to the very difficult job ahead of redrafting and making a
workable piece of legislation.
The committee itself has
proposed that a subcommittee, a representative from each caucus,
together with the Chair of the committee, meet with ministry
staff and begin the process of reviewing the submissions we've
heard, prioritizing some of the areas that we think need to be
addressed, giving some of our recommendations to the ministry and
the parliamentary assistant to go back and talk to the minister, and we've offered to
keep involved in an ongoing process there. You may know there are
rumours that the House may prorogue. The bill may die on the
order table in any event, but that doesn't mean the redrafting
can't go on and it doesn't mean that we as a group can't meet as
MPPs who are volunteering to be involved on an ongoing basis even
if we're not formally constituted as a subcommittee.
Does your office have any
interest in being part of those discussions with the three
committee members and the ministry staff as we're trying to sift
through the information, see where there is consensus, where
there are differences and narrow the issues down?
Dr
Cavoukian: Very much so. I would appreciate the
opportunity to participate in such an exercise. As you know, my
office has reviewed this bill at great length and has really
turned their mind to what are some appropriate amendments we
could consider. So we would be very pleased to participate and
offer you whatever assistance we can.
Ms Lankin:
There is one piece of actual advice that I think would be very
helpful for us if you and your staff have the opportunity to take
a look at this. In a few of the presentations we have been told
to look to a document that is model state health privacy
information that has been prepared by two university professors
from Georgetown University in the States. A copy of that has been
available to the committee, so the clerk could give that to you.
We've also been referred to the Minnesota legislation and have
been told that is model legislation. We have asked legislative
research to prepare a summary and comparison of those pieces of
legislation with Bill 159, looking at the philosophical
underpinnings and the major similarities or differences.
If your office could take a
look at those two as well and provide your comments to the
committee, I think that would be tremendously helpful to us.
Dr
Cavoukian: Done. We'll do it. We may already have done
it and I don't know about it.
Ms Lankin:
Thank you very much.
Mrs
McLeod: Mr Chair, I don't want to extend the
questioning. I appreciate the fact that the time has expired but
I'm wondering whether the committee would consider asking the
privacy commissioner as well to give some consideration and
advice to the committee on a new issue that we haven't had a
chance to consider before and it falls out of the hearings we had
yesterday and the case that was raised by Mr Murray about access
to records and the government's initial response is to consider
the mailing of OHIP statements to individuals.
We're the group that's been
dealing with privacy issues now for some time. I do believe that
potentially raises some very significant privacy issues in terms
of who could in fact be the recipient of a mailed record. I'm not
sure that it's something that needs to be addressed in
legislation but it does raise an issue that I think we need to at
least consider in the legislative process, and I'm wondering if
the commissioner would be prepared to give some thought to that
and to the ability to protect privacy in the event of that being
a direction the government goes.
Dr
Cavoukian: We have already turned our mind to it. As
soon as I learned of that, of course the privacy considerations
were top of mind. We're presently preparing a written piece on
that and we have contemplated a model that would be much more
privacy protected in the event that direction was pursued. We'd
be glad to forward that to you.
The Chair:
Thank you very much. We appreciate that. We thank you for
appearing before us again today.
1130
INSURANCE BUREAU OF CANADA
The Chair:
Our next presenter will be Mr George Henry.
Seeing no sign of Mr Henry,
the Insurance Bureau of Canada is next on our list. I'll ask them
to come forward. Good morning and welcome to the committee.
Mr Mark
Yakabuski: Good morning. Thank you very much, Mr Chair.
My name is Mark Yakabuski. I am the Ontario vice-president of the
Insurance Bureau of Canada. With me this morning is Lee Samis,
who is legal counsel to the Insurance Bureau of Canada.
First of all, I would like
to express my pleasure in being able to appear before this
committee to address some of the issues in Bill 159. This is an
important bill. The protection of personal information, including
personal health information, is a preoccupation of long standing
with the auto insurers of Ontario whom I represent this
morning.
The Insurance Bureau of
Canada represents the auto, home and business insurers of Canada.
We represent an industry with a premium base of about $20
billion, providing employment directly to about 40,000 people
here in Ontario. As part of our membership, we represent the
automobile insurance industry. We insure over seven million
vehicles in the province of Ontario. Just to put this in
perspective, there are more insured drivers in Ontario than there
are taxpayers in the province. So when we talk about auto
insurance and how it impacts on people across this province,
we're talking about something that is of very real importance
indeed.
Having said all that, I
also want to point out that auto insurers are today major payers
of health care services. You may or may not be aware of the fact
that since 1990 Ontario has had some kind of no-fault auto
insurance system under which those who are injured in an auto
accident receive health care and other benefits required to
return to them health according to a schedule of benefits which
is set by the Legislature and which is administered by auto
insurers. As a result of that no-fault system which Ontario has
had in varying ways since 1990, the cost of health care for the
auto insurance system has ballooned much faster than health care
costs in the public sector have, for example.
In 1991, the first full
year of no-fault insurance in Ontario, health care costs for auto
insurers were $312 million. In 1999, health care costs for auto
insurers were $887 million, and those costs continue to increase
by double digits each year. So we are very large payers of health
care in the province of Ontario. In fact, an interesting thing to
note: auto insurers are the largest purchasers of rehabilitative
health care in Ontario, significantly larger than the Ministry of
Health and Long-Term Care and the Workplace Safety and Insurance
Board combined.
We deal with health
information, therefore, on a daily basis. I want to assure you,
first of all, that it is not dealt with haphazardly. We are
mandated by the Financial Services Commission of Ontario to
collect data on all insurance claims, including health care
claims. This data is communicated from a health care provider to
an insurance company, which is obligated under the Insurance Act
of Ontario to pass on this information to the Insurance
Information Centre of Canada, which aggregates this information
and then publishes this information under the auspices of the
Financial Services Commission of Ontario. In other words, we
collect information; it happens in a highly regulated context,
but we are dealing with substantial amounts of health
information, given the fact that on a yearly basis we pay for
health care benefits for approximately 66,000 injured accident
victims.
I think it's important to
note that the health care information we are dealing with is not,
in most cases, the personal health record or file of Mme X or Mr
Y. It is billing information which we get from health care
providers who are providing physiotherapy, chiropractic care,
occupational therapy, speech-language therapy, these sorts of
things. We get the information via the billings, in most cases,
that these practitioners of course send on to the insurance
company to pay.
We collect lots of
information and the privacy of this information is of utmost
importance to us. We have had a privacy code in the property and
casualty insurance sector since 1992. That code was originally
drafted according to the OECD guidelines on privacy of the
day.
We subsequently
participated directly and very closely in the exercise, along
with a number of other public and private agencies, in developing
the Canadian Standards Association model code for the protection
of personal information. We were deeply involved in that
exercise, and that finally resulted in a national privacy
standard, as you might know, which was made public in March 1996.
Subsequent to that, we revised our original privacy code to
ensure that it conformed with the new national standard, and in
February 1997, our new privacy code was certified by the CSA as
being in compliance with the new national standard.
We run consumer information
centres across Canada as part of our function. In 1998, for
example, we received almost 120,000 consumer calls on various
insurance-related issues. Of those many thousands of calls, 549,
or less than one half of 1%, dealt with privacy issues and the
vast majority of those were requests for information only.
I hope I'm giving you a
context here for the fact that we are major payers of health
care, we are major recipients of health care information, and the
privacy of that information is something we take very seriously.
Having said that, I want to make some general comments about
privacy legislation here in Ontario and more specifically later
the bill you have in front of you.
It is very important from
our perspective that any privacy legislation dealing with health
information and other information be harmonized with the federal
legislation, Bill C-6, and with the other provincial legislation
regarding privacy across the country. As you will appreciate,
Ontario is the largest head office centre in Canada, Toronto
specifically. Many of our companies operate across many of the
different provinces, and therefore our ability to provide
insurance cost-effectively is dependent on there being some level
of harmonization in the laws and regulations which we must obey
across the country. We have worked very hard with insurance
regulators across the country to get insurance regulation more
harmonized across the country. We would hate to face a situation
today where suddenly, having achieved a much greater level of
harmonization in most other legislation, we are faced with
repeating 11 solitudes of privacy legislation which companies
have to respect. Moreover, if this legislation is not
substantially similar to Bill C-6, the federal legislation, then
we are all going to have a substantially greater problem on our
hands. That's a general comment: being able to harmonize our
legislation in Ontario with that of other provinces, and most
importantly with the federal legislation, is a very important
objective.
1140
The other thing I would
say, by way of a general comment, is that this legislation
dealing specifically with the protection of personal health
information must synchronize with whatever the government brings
forward with respect to general privacy legislation as promised
when the Ministry of Consumer and Commercial Relations went out
with its discussion paper last summer and fall. We submitted
comments on that discussion paper. The ability to synchronize
these two pieces of legislation will be of great importance to
the auto insurance industry and to businesses throughout this
province.
What the Legislature will
need to take account of, as it looks at this bill and whatever
further iterations we might see, is the fact that we are dealing,
particularly here in Ontario, with a very complex health care
system where the components are increasingly interdependent.
You may or may not know
that while the Ministry of Health and Long-Term Care this year
has an operating budget of $22.5 billion, there is an additional
$10 billion being spent on health care in Ontario in the private
sector. We are dealing with a health care complex in Ontario of
considerably greater dimensions than $30 billion. One of the
largest components of this private sector health care is that of
the auto insurance industry. As I said, this year we will
probably come close to spending $1 billion on health care claims
for injured auto accident victims. It's absolutely essential that
there be some measure of coordination between the different
components of this system.
When we're dealing with an auto accident victim,
for example, we have to understand that at any given time there
will probably be three or four different payers of health care
involved in trying to get that person better. If that person has
to go to the hospital or see a doctor, hospital and physician
costs are paid for by OHIP. Each year, auto insurers pay the
Ministry of Health and Long-Term Care $80 million in lieu of
those health care costs, but the front-line costs are paid by
OHIP. When that person comes out of hospital and physician care,
they will need the services of a chiropractor, a physiotherapist,
an occupational therapist, any number of other health care
practitioners. That person's employer or employee health care
package will pay up to the limits of health care for that
portion, and all additional health care costs will be paid for by
that person's auto insurer.
Here we have, on a daily
basis, at least three or four different components of the health
care system treating exactly the same person for the same
injuries, and yet today, with a health care complex worth more
than $30 billion in Ontario, we have no capacity whatsoever to
evaluate billings from one part of the system to another, to
communicate basic billing data from one part of the system to the
other.
I don't know about you, but
I suspect most taxpayers are going to say, "That's not good
enough." We absolutely need a system in place that protects the
personal privacy of health information, but which at the same
time permits the kind of basic data sharing that is necessary to
manage what is an increasingly complex and costly system.
Otherwise, there is absolutely no way for us to be accountable
for the $22.5 billion we're spending in the Ministry of Health
and Long-Term Care and the $10 billion we're spending in the
private sector, and that $10 billion we're spending in the
private sector touches absolutely every one of us. For example,
as I've mentioned, there are seven million insured vehicles in
Ontario. If we are not able to properly manage health care costs
in the auto insurance system, that is going to impact on
absolutely every resident of this province.
It is essential, in our
estimation, whatever health care privacy legislation we come up
with, that it also permit the kind of basic data sharing that is
essential for proper management of our health care system.
We are trying to help in
better managing this very complex health care system in Ontario
by working on developing a standard invoice, for example, for the
auto insurance system. Anyone who bills for health care in the
auto insurance system will have to bill according to a standard
invoice. That currently is not the case, and there is no way
currently where we can actually measure how much money is being
spent on specific health care services in the auto insurance
system. I don't believe that's good enough for our policyholders.
So we are working with the Financial Services Commission of
Ontario and with health care providers in Ontario to develop a
standard way of making these billings so that they can be
properly measured, so that certain fundamental data can go into a
database and be available for the analysis and management of
health care programs.
To the degree that Bill 159
does at least conceptually permit certain forms of data sharing,
we think that these ideas should be applauded and perhaps further
developed as this legislation goes forward.
Let me turn to specific
comments on Bill 159. Clause 38(2)(d) of the legislation
continues a provision that is now found in the Health Cards and
Numbers Control Act permitting certain people to use the OHIP
number-the health number, as it is called-for other purposes as
prescribed by regulation. We think it's important to continue
this provision in whatever privacy legislation we have for
personal health information.
This would be a major
improvement over what currently exists, for example, in our
trying to develop a standard invoice. If because of the constant
interaction between OHIP and the auto insurance system and other
health care payers, we were all able to use a common health
number, that would assist dramatically in being able to
communicate, as I say, basic billing data from one part of the
system to the other. So to the degree that this section permits
the use of the health number in these prescribed instances, we
think that is something that should be applauded.
I might point out to you
that there's currently an initiative underway across Canada,
which is being sponsored by the Canadian Institute for Health
Information, in developing a national standard for the electronic
communication of health care billing. The ability to use common
health numbers would greatly assist in this process.
Similarly, we like
generally the provisions to be found in subsection 30(2) of the
bill. This section allows a health information custodian to
disclose certain information for certain public policy purposes.
We think that's important. There are some public policy purposes
that have to be recognized. This section, for example, recognizes
the importance of evaluating and monitoring programs, allocating
resources, doing future planning, and detecting, monitoring and
preventing fraud, for example. We think these are important
objectives. However, in our view, this section is worded probably
in a way that would not adequately capture the activities that
insurers routinely engage in in order to analyze health care
outcomes, services etc. It seems that this section is directed
specifically at being able to analyze or evaluate a specific
custodian's programs or services, and not directed at being able
to perform a wider analysis of health care services in
general.
The Chair:
Mr Yakabuski, we've actually gone overtime. Might I invite you to
make a final point?
1150
Mr
Yakabuski: As you will find in my brief, we make
suggestions in four areas. Section 30 should be amended in order
to clarify the application of that section. We suggest that there
be new clauses inserted into the bill which would allow for the
proper detecting and prevention of insurance fraud, which costs
insurance customers about $1.3 billion a year. We like the
distinction between recipient and health information custodian.
We point out that the
Ministry of Health is a major direct provider of health care; the
Ontario auto insurance industry is not. Therefore, the
distinction is very important.
We also suggest that there
be an amendment to subsection 24(3) which specifically will say
that you're able to disclose information to other people involved
in the course of doing the business for which the disclosure was
made, taking into account that in the case of the insurance
business, for example, in trying to settle claims, we involve
lawyers, we involve adjusters, we involve investigators-all kinds
of other professional people. They are an integral part of the
settling of claims; therefore, that clause should be broadened to
take that into account.
My last point would be that
the bill has to set out some appropriate transition measures,
because in many instances when you introduce privacy legislation,
you may well require all kinds of groups to go out and get
additional consents that they would not currently have because
currently they're not required. There are no transition steps in
this bill, and we think that would be an important addition to
whatever legislation you ultimately come up with. Thank you very
much.
The Chair:
Thank you very much for your presentation. We appreciate it.
GEORGE HENRY
The Chair:
Now we will go back on our agenda: Mr George Henry. Good morning
and welcome to the committee.
Mr George
Henry: Thank you. Sorry for being late; I was in the
wrong room.
I would like to respond to
Bill 159. I do not believe this bill should be passed for a
number of reasons. First, I feel that it's an injustice to pass a
bill which would allow information to be left on a person's
record when that information is deemed untrue. These health
records are not only essential at the time they are created, but
also are very important for future references.
It is also my opinion that
the entire system be fixed before amendments are made. I
personally have trouble with regard to my health records. While I
was under the care of the province of Ontario-the children's aid
society-I was infected with hepatitis. For 38 years I was not
notified of this disease which I carried. Over the years I may
have infected many other people unknowingly. In the 1960s, the
Minister of Health, the Honourable Dr Dymond, wrote a report to
the Governor General of Canada stating that anyone who had
infectious hepatitis, which I have, should be notified. Neither I
nor my family were ever notified of this disease which I
carry.
It is also my opinion that
there should be only two people who have a person's medical
records: the doctor and the patient. I feel that the government
should have no right to infringe on the privacy of any Canadian
citizen; for instance, through medical records. The information
in a person's health record is very personal and should only be
used when needed for medical purposes.
In conclusion, I strongly
disagree with the passing of Bill 159. I also feel that drastic
changes should be made to ensure that all Canadians are given
correct information with regard to their own health records.
Thank you very much.
The Chair:
If you're interested in taking questions, we certainly have a few
minutes.
Mr Henry:
Yes.
Mrs
McLeod: I appreciate your presentation. I hope that
we've made some progress in recent years and that this
legislation can be changed in ways that will respect the concern
for privacy, as well as access to your own records, that you've
expressed.
Mr Henry:
It took me over a year to get these records through there, right,
which I shouldn't have had to go through.
Mrs
McLeod: I appreciate that. Certainly, one of the
concerns we've been dealing with around the committee table, and
we've heard from other presenters, is that people need both
access to their records and the ability to correct inaccuracies
on their records. Those are both issues that I believe the
committee will want to address. Thank you very much.
Ms Lankin:
I don't have a specific question. I want to thank you for coming,
though. I think that as we've heard from individual citizens who
have come forward, overwhelmingly the sentiment we've heard is
that there have to be strong protections for privacy and strong
rights of access to the information. With those of us who are
immersed in the system, sometimes we look at systems management
issues and other needs and forget about that overriding public
opinion, so it's very helpful for us to have that reinforced.
Mr Wood: I
gather with respect to the correction of records, you think it
would be a good idea to have some third party, by which I mean
some-
Mr Henry:
Yes, independent, if possible; like any political party or
whatever, or health care provider.
Mr Wood:
The kind of person, for example, who could be considered for that
would be the Information and Privacy Commissioner.
Mr Henry:
Yes.
Mr Wood: I
don't know whether you want to answer this question or not, but
I'm going to put you on the spot and you can decide whether or
not you want to answer. We've heard from some groups that there
are certain kinds of research, because of the small number of
people who are affected by it, that you can't do in a practical
way and get the consent of the people whose health records you're
accessing. If we come to the conclusion that's right, and we
haven't come to that conclusion yet, which side of that would you
come down on? I'm going to put you right on the spot here and you
can decide whether or not you want to answer it. If we got to the
point where we saw there were certain kinds of research where we
either had to allow access, under oversight and so on, or say,
"No, you can't do that kind of research in Ontario," which side of that argument would
you come down on, would you think?
Mr Henry:
I would say I would be on the side of the research not being made
available, or some deleted there, blacked out, so the person's
name doesn't show or his health number. All the rest of the
information could be used for research purposes. I don't see why
they have to have the person's name or health number for research
purposes.
Mr Wood:
We don't have time for me to explain to you exactly how some of
these people come to that conclusion, but if we got to the point
of having to say, "Yes, we will allow some access without
consent," or "No, you can't do that kind of research in Ontario,"
if we got to that very difficult point-
Mr Henry:
I would say no to research in Ontario there, because research is
going on in the United States with drug companies doing their own
research and paying there, so I imagine they can go through
alternative means than just grabbing somebody's record.
The Chair:
Thank you again, Mr Henry. We appreciate your taking the time to
come before us here today.
CANADIAN CIVIL LIBERTIES ASSOCIATION
The Chair:
Our next presentation will be from the Canadian Civil Liberties
Association. Good afternoon and welcome to the committee.
Mr Stephen
McCammon: Thank you very much for the opportunity to
appear before you today. Alan Borovoy sends his regrets. He would
have been here himself but he was reluctant to attempt another
rescheduling of our deputation, so he sent me in his stead. My
name is Stephen McCammon. I'm associate counsel with the Canadian
Civil Liberties Association.
CCLA welcomes Bill 159 on
the basis that it generally advances the state of the law today
in respect of privacy protection and privacy rights. To begin
with, the bill strikes off in the right direction in light of two
key features: first, it creates an almost uniform set of rules to
safeguard some of the most personal and private information in
the province; and secondly, it makes a fair start at providing
for a single oversight mechanism to ensure that the bill's
written rules are respected.
At the same time, CCLA
urges you to consider several key amendments. These amendments
fall into four areas: on disclosures; on patient access to
records and the correction of those records; on the role of the
Information and Privacy Commissioner; and on the application of
the bill.
On disclosures, I'd like to
turn your attention to section 12 of the bill, which codifies
some important general principles designed to limit the
possibility that personal health information will be collected,
used or disclosed improperly. However, subsection 12(8) of the
bill takes us all needlessly down a wrong turn. Section 12(8)
says that the basic principles-for example, the principle that no
more information should be disclosed than is reasonably necessary
to meet the purpose-that kind of principle doesn't apply where
the disclosure is directed under the act or required under some
other act. It's very hard to understand, however, why such a
basic, vital and flexible principle should ever not be a
consideration in any decision about the wisdom of disclosing
personal information. After all, why should any purpose warrant
disclosing more information than is reasonably necessary to meet
that purpose? It's a contradiction; it doesn't make any
sense.
1200
The principles found in
section 12, then, ought to apply across the board, including
disclosures directed by the minister under section 31.
Accordingly, our first recommendation is that you urge this bill
be amended so that 12(8) is taken out.
In a number of provisions,
Bill 159 spells out circumstances under which health information
custodians may disclose personal information without a person's
consent. It should be clear by now, however, that such
non-consensual discretionary disclosures ought to be the
exception and not the rule. Indeed, in the not-so-distant past,
the Krever commission propounded a great deal of wisdom on this
very subject and suggested a number of safeguards.
More specifically, the
law-enforcement-related discretionary disclosures permitted by
subsections 36(1)(g) and (h) are far too broad. Doctors and other
health information custodians ought not to have their special
relationship with patients, so dependent as it is on
confidentiality and trust, undermined by the pressures that
inevitably flow from such a wide discretion to disclose to police
and other authorities. Indeed, as a general matter, such
disclosure should only be permitted where an overriding interest
trumps general duty not to disclose. The bill ought to be amended
to reflect the principle that health information custodians
should not disclose personal health information to the
authorities unless there is a reasonable basis to believe there
is a significant risk of injury or harm. I want to clarify that
that's bodily injury we're talking about. Even then, personal
information amiable to a warrant application should not be
disclosed until after a warrant has been obtained. These are the
general safeguards we have in law around the Criminal Code and
there is no reason to diverge from them here in the province of
Ontario. None of this is designed to frustrate policing. All of
this is designed so as not to erode public confidence in health
care and health privacy.
Similarly, the bill should
be amended to limit the discretion granted health information
custodians when it comes to disclosing the personal information
of people detained in penal, custodial or psychiatric facilities,
and to those institutions and the officials thereof. Section 33,
therefore, should be amended to ensure that unless such a person
is determined to be incompetent or dangerous, no disclosures
should be made that are not otherwise consented to or provided
for in law.
One more matter on
disclosures: in the bill, in section 36, there are a number of
other permissive disclosure regimes in relation to a number of statutes. I
confess we're not up to speed on why social workers and various
health regulatory professionals under section 36 need this
disclosure room. We are mindful that managing the health care
system involves some flexibility. What we propose is that if you
go ahead with these permissive disclosures in section 36, then
you amend the bill so that after one year the power to disclose
under those sections lapses. You would have to re-enact it, and
in the interim we would ask you to provide further information to
the public about why such permissive disclosures are available
and perhaps consider having the privacy commissioner conduct a
review of those specific kinds of disclosures.
I'd like to now move on to
discuss patient access to and correction of patient records. Most
everyone would agree that, subject to specific and narrow
exceptions, patients ought to have access to their own records
and they ought to be able to dispute the accuracy of those
records. While the bill acknowledges as much, there are three
problems I'd like to draw to your attention.
First, section 44,
specifically paragraphs (d) and (e) of the bill, allows
government to limit access and correction rights by way of
regulation. While future developments may mandate new exceptions
to these or other important privacy rights, rights-limiting
changes invariably ought to be creatures of legislative action,
preceded by full and public debate. Leaving such matters to
regulatory pronouncement means exposing all of us to unnecessary
risks. While there is no way of ensuring that laws passed after a
full debate will themselves be sound, there is even less reason
to be confident that laws developed without such scrutiny would
be wise or fair.
Every one of us has a
finite amount of wisdom and, in any case, the fairest of
governments are replaced, all of which is to say that any faith
anyone has in a government of their own party is at best
comforting themselves with cold comfort for the short run.
Last, if governments seek
legitimacy in this kind of law-making, they must at a minimum
engage those who will have to live with the law in a full and
public debate. Accordingly, CCLA recommends that clauses 44(d)
and (e) be struck from the bill. If there are other exemptions to
consider, let them be set out specifically in the
legislation.
I should note that this is
a general concern that comes up from time to time in other
provisions of the bill. We say again it's one thing to handle
administrative matters by way of regulation, but rights-limiting
provisions should be set out in legislation and not left to
regulation. Time doesn't allow me to get into all the details,
but I would ask to have particular attention in this regard given
to section 76.
The second matter under
access-to-information concerns: while it might be proper for a
health information custodian to consider refusing a patient
access to records collected or created under a properly
authorized investigation, access should only be refused in fact
where it is reasonably expected to interfere with such an
investigation. As it stands now, section 48 appears to allow a
refusal even in circumstances where an investigation is long
over. Accordingly, subclause 48(1)(b)(i) should be amended so as
to ensure that access will only be refused where it is reasonably
expected to interfere with an ongoing investigation.
Third, while the bill
rightly allows patients to dispute the accuracy of their own
health records, the proposed remedy falls short of a cure. If a
health information custodian attaches a statement of
disagreement, it's game over. The record may indeed be wrong, the
error may have serious consequences for the patient's peace of
mind, well-being or livelihood, but the record stands. True, it
stands beside a statement of disagreement, but you know as well
as I that many of us trust experts over Citizen Jane or Joe. Of
course sometimes the expert is right but by no means always. In
any case, surely one of the main points of these sorts of dispute
resolution mechanisms is to root out errors, especially gross
errors.
As it stands, there's
nothing in this bill that trumps a stubborn custodian's gross
error; it just sits in someone's personal file looming over a
statement of disagreement. Patients ought to be able to complain
to the Information and Privacy Commissioner in such circumstances
and the commissioner ought to be able to order a correction where
the correction is warranted. Subsection 50(9) and clause 71(1)(b)
ought to be amended accordingly.
I now turn to the role of
the Information and Privacy Commissioner. The commissioner and
the proposed assistant commissioner have a vital role to play in
ensuring that rights that are written down on paper are actually
respected across the province. Here too the bill heads off in the
right direction. However, it needs at least three pushes to give
it enough steam to ensure reasonable prospects of success.
First, the commissioner's
role in reviewing disclosures directed by the minister is unduly
fettered. Essentially, subsection 31(2) says that the minister
must allow the commissioner to review plans to direct the
disclosure of personal information ahead of time unless the
information arises from a program or service that involves any
public monies or administration. That would mean that any such
disclosures in relation to the vast majority of health care would
go ahead without any review at all. After all, the lion's share
of health care is handled, or at least partially funded, by the
public health care system, unless you've been tipped off about
plans to privatize health care in Ontario from top to bottom. But
in any case, we ask you to ensure that the bill is amended so
that all directed disclosures are preceded by a thorough
commission review.
Second, section 14 of the
bill gives the commissioner too narrow a role in reviewing health
information custodian plans to conduct computer matches of health
information databases. Database matching is an enormously
powerful tool and, as is usually the case, such a powerful tool
brings with it a potential for tremendous benefits and terrible
hardships. Accordingly, CCLA recommends that any plan to conduct
computer matching first face review by the commissioner, who
ought then to be able to publicize any concerns not resolved
through the review process. Such a system will allow for
much-needed scrutiny, without unduly fettering the good use of
innovative technology.
1210
Thirdly, one of the key
roles the bill properly assigns to the commissioner concerns
patient complaints about improper information practices. Under
section 68, a person injured by an inappropriate collection, use
or disclosure, for example, can lodge a complaint with the
commissioner. What can the commissioner do then? Unfortunately,
in the aftermath of attempts at mediation, very little.
To begin with, the
commissioner's power to investigate such complaints comes up
short. In contrast to the investigatory powers provided to deal
with access-to-records concerns, the commissioner has no power,
for example, to demand the production of relevant documents. The
simple answer is to ensure that when dealing with complaints, the
commissioner is provided with investigatory powers similar to
those granted to her in relation to access-to-records concerns,
as set out in section 69.
At the same time, we note
that the commissioner's complaint-related remedial powers are
overly narrow. While the commissioner can comment and recommend
freely, she can only order a custodian to cease improper
collecting practices or order her to disclose improperly
collected information. What happens, however, if the complaint
shows that the information wasn't collected improperly; instead,
it has been used or disclosed improperly? Destroying such records
will likely stop the misuse or wrongful disclosure, but it might
also result in the destruction of properly collected and
otherwise vital information. Surely the commissioner should be
granted remedial powers suited to the range of complaints she
will evidently face. Such powers should include the power to
order a custodian to cease improper collections, uses or
disclosures, as well as the power to order the disposal,
retrieval or redirection of relevant information.
The final area of our
presentation today concerns the application of the law. Employers
and insurance companies are conspicuously absent from the list of
those defined as "health information custodians." Nonetheless,
virtually every such operation is already and will continue to be
in possession of a great deal of highly personal information in
the absence of oversight. While we are pleased that as recipients
of such information, the bill will bind them not to use or
disclose personal health information for any extraneous purposes
not otherwise consented to or provided for in law, we nonetheless
urge the committee to amend the bill so as to ensure that
employers and insurance companies in possession of personal
health information are included in the definition of "health
information custodians."
I'd be happy to reiterate
our recommendations, but I imagine my time may be short. I'd be
happy also to entertain questions.
The Chair:
Thank you. There are about two minutes per caucus.
Ms Lankin:
I appreciate your presentation; it's very helpful. There are a
number of key areas that I think the committee would be
interested in pursuing.
I have two specific
questions. First, in a situation where a health information
custodian may disclose information where they believe there's
been a criminal offence and/or where there is a significant risk
to another individual-there are a couple of aspects to that-we
have had presentations before us that suggest that the test of
significant risk which you propose is actually a weaker test than
what currently exists in the Mental Health Act, where I believe
the wording is "serious and imminent danger of bodily harm" or
something; I don't have the exact words in my head. When you use
the words "serious risk," were you proposing a legal test or were
you just describing that we had to have some more protection than
what was in the act?
Mr
McCammon: I was certainly suggesting we have more
protection than what we have in this bill. I think you're correct
in identifying a principal concern about the unique circumstances
faced by psychiatric patients. Extra protections might well be
needed to ensure that the kinds of information they disclose are
not cavalierly disclosed without their consent or the
authorities'. I think that's fair to say.
Ms Lankin:
You may want to put your mind to that issue of the different
tests of significant risk or serious and imminent danger.
Mr
McCammon: Unfortunately, I think the imminence has been
taken out of much of the mental health regime.
Ms Lankin:
Only in certain respects, not in others.
The second question: when
you talked about the section that has permissive disclosures by
exempting certain other pieces of legislation-the Regulated
Health Professions Act or whatever-we've had much evidence about
their role and the differences in their role. But I wondered if
you would be comforted if the section 12 principle of only
disclose as much as needed for that purpose was built in and
applied to any of these exemptions or areas where we're deferring
to provisions in other pieces of legislation.
Mr
McCammon: I read the bill to mean that those general
principles do apply to discretionary disclosures, including those
under section 36. So that's a partial comfort, but not
necessarily comfort enough. I think when you outline explicit
discretions to disclose, even there you have to have a valid
purpose in mind. I'm just not aware at this time whether or not
the range of disclosures considered under section 36 in respect
of those regulated areas rise to that level of purpose.
Mr Wood:
I'd like to ask about something that pops up at a number of
points in this bill where we have disclosure without consent. I
think there's probably a significant body of opinion that that's
necessary in some cases, for example, for a regulatory body of a
profession. The issue that some have raised is, should a
regulatory body of a
profession, a college, have the right to access that information
period, or should they have to go to a third party, ie, get a
search warrant before they do it? In other words, where they're
the enforcer, should they be able to decide themselves whether or
not to access, or should they have to go to a third party?
Mr
McCammon: I think in general the presumption is, if not
consent, then a warrant-type regime; if not a warrant-type
regime, then explicit and very narrow exemptions from the general
principle of consent. Those statutory regimes themselves have to
be justified in terms of some higher purpose that trumps the
general principle of don't disclose without consent. I'm not sure
I can answer the specifics of each-
Mr Wood:
No, I'm asking generally.
Mr
McCammon: Generally I would say again, if not consent,
then have a third, independent party assess.
Mr Wood: I
wonder if you'd share with us for the record why you say
that.
Mr
McCammon: Why I say that?
Mr Wood:
Yes. What considerations have led you to that opinion? Why do you
think that's important, in other words?
Mr
McCammon: I think the main thread running throughout
this is that health information and how it gets shared, why it's
important that it is shared, all rests on this trust between
people and their health care providers. They disclose a great
deal of information that goes nowhere else, in their own minds.
They want it only to go to their doctor. Often people disclose
things to doctors that they wouldn't disclose to their friends or
colleagues because they're looking for help with some problem
that may in fact go to their well-being in life. That privacy
concern, the dignity associated with it, the special nature of
the relationship between a doctor and a patient, require some
safeguards and require us not to put pressures on the doctors
unduly to go beyond the confines of that professional
relationship.
There are a wide range of
perfectly valid possible exemptions. When should an exemption be
one that isn't reviewed by a third, independent party? I say,
only when the purpose of that exemption reaches a benchmark of
significance to generally trump the principles of no consent and
only no consent with a warrant regime.
Mr Wood:
Why would it ever trump it?
Mr
McCammon: Again, if a doctor, for example, learns from a
patient and has reasons to believe that a patient is going to go
out and do someone some terrible harm, that kind of harm might
well trump the general principle of don't disclose without
consent, but it's narrow, that exception to allow a permissive
disclosure. For other circumstances, there's certainly good
reason why authorities of all kinds want the information, but why
not put them to the modest difficulty of having to justify it in
order to safeguard the regime of health care and health care
privacy, which is, after all, the thrust of this bill?
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Mrs
McLeod: I appreciate the clarity of your presentation.
I'm looking forward to having a written copy so that we can refer
to it at numbers of points. We can obtain that through Hansard,
if not otherwise.
I want to come back to the
issue of the trumping of the rule of no disclosure. You had
mentioned in your presentation that there's a general principle
that there should be no disclosure unless risk of significant
bodily harm to others. You also referenced safeguards in the
criminal act. My first question is, in referencing the safeguards
in the criminal act, are you referring specifically to law
enforcement officers or more broadly, that that's the overriding
principle that could be trump the no-disclosure rule?
Mr
McCammon: If I understand your question, the principle
of safeguarding no disclosure without consent certainly goes
beyond merely to law enforcement officials. There are a whole
variety of officials engaged in all sorts of different
investigations, typically of a less pressing nature than the
criminal law authorities. So certainly the same principle would
apply to the lesser-
Mrs
McLeod: So for others, that principle could trump the
no-disclosure rule. With law enforcement officers, are you
suggesting that should be a direction in legislation that governs
even the granting of a warrant, that you should not even be able
to subpoena health care records?
Mr
McCammon: No. The warrant regime provides for a hearing
in which the interests of privacy and the interests of law
enforcement can be weighed and adjudicated by an independent
judge.
Mrs
McLeod: I ask the question for two reasons and I am
focusing on the warrant issue for two reasons. One is because we
heard earlier this morning in a televised submission that there
is a concern about sensitive health records becoming part of
court records, particularly in the sense now that they can appear
on the Internet and can be readily accessed. That's the first
concern.
The second concern is that
we periodically hear about warrants that have been obtained to
access health records in situations which seem to us a little
hard to explain, and we wonder what governs a justice of the
peace, for example, in giving a police officer a warrant that
allows him to obtain sensitive health records.
Mr
McCammon: I'm not prepared to take apart the whole
warrant regime today. I am sure there are examples where warrants
are unjustifiably granted, but there is a court system designed
to check that from time to time. We can't design a perfect system
today. We're not going to say, "No warrant applications for
health care records." We just want to make sure that where
consent is not going to be respected, there is an independent
third party to adjudicate on the wisdom of disclosing this
sensitive information for this particular purpose.
Mrs
McLeod: And you don't think-
The Chair:
Sorry, we're well over our time. Thank you very much for
appearing before us here today. We appreciate your
presentation.
TORONTO ASSOCIATION FOR COMMUNITY LIVING
ONTARIO ASSOCIATION FOR COMMUNITY LIVING
ONTARIO AGENCIES SUPPORTING INDIVIDUALS WITH SPECIAL NEEDS
The Chair:
Our next presentation will be from the Toronto Association for
Community Living. Good afternoon and welcome to the
committee.
Mr Gordon
Kyle: Hello. I'm going to begin. My name is Gordon Kyle.
I'm a policy analyst with the Ontario Association for Community
Living. Also presenting with me today will be Bill Barber, whom I
will let introduce himself more thoroughly in a moment.
I would like to thank you
for giving us this opportunity to present on this important
issue. We are actually here today representing three
organizations: the Toronto Association for Community Living,
Ontario Agencies Supporting Individuals with Special Needs, and
the Ontario Association for Community Living. Collectively, our
organizations represent more than 150 organizations across
Ontario supporting people with intellectual disabilities.
Our organizations are
committed to the creation of a society where all citizens are
welcomed and have an opportunity to participate in all aspects of
community life, including school, work, housing and leisure
activities, a society where people are supported to carry out
roles and responsibilities as citizens. For more than 50 years we
have worked within communities, providing a wide range of
supports and services to individuals with intellectual
disabilities.
The description of our
organizations and mission is provided here not just for
background. In fact, it's important to understand who we are, to
understand our feelings about Bill 159. The services we provide
are funded primarily through the Ministry of Community and Social
Services via the Developmental Services Act and the Homes for
Retarded Persons Act, both of which are covered by Bill 159 as it
is currently drafted. It is our position that the inclusion of
services delivered under these two acts in the requirements of
Bill 159 is inappropriate, essentially spreading the net too far
with this legislation, and should be changed to exclude these two
acts.
The programs and services
delivered through the Developmental Services Act and the Homes
for Retarded Persons Act are not health services by any means.
The services provided through these acts are designed to provide
key supports to individuals to allow them to participate in the
mainstream of society. As this relates to health care, services
provided under these two acts are designed to link individuals to
appropriate health care providers in the community, but clearly
our services do not provide any health care services.
In fact, people with
disabilities in Ontario have worked hard throughout the history
of our organizations to avoid being seen as aligned with health
care services. People with disabilities desire to be seen as
regular citizens and, like other citizens, and sometimes to a
greater degree than other citizens, require certain
accommodations and supports to participate effectively in their
communities. The need for such accommodations and supports does
not mean that people are ill; this is a stigmatization that we
have fought hard to avoid. We have insisted that funding for our
services be tied appropriately to the Ministry of Community and
Social Services, which has a mandate to build supportive
communities. We are clear that the support services that people
with intellectual disabilities require to participate in their
communities should not be delivered through Ministry of Health
funding and should not be seen as services that are required to
help people overcome their "affliction," their disability.
This has been one of the
key elements of our philosophy and approach throughout our
history and we ask that Bill 159 be changed to respect this and
to exclude the Developmental Services Act and the Homes for
Retarded Persons Act from the legislation.
We would like to take a few
moments to talk to you about some of the implications of the
legislation if it were to be applied to the services that are
delivered through these two acts.
I'm going to ask Bill to
make a few comments on that.
Mr Bill
Barber: My name is Bill Barber.
I appreciate the
opportunity to speak to you today on the legislation. I am a
volunteer board member of OASIS, an umbrella association that
represents 75 agencies across Ontario providing services and
supports to people with developmental disabilities and their
families. I am also a volunteer board member of the Toronto
Association for Community Living, which is one of the OASIS and
OACL agencies which provides these services and supports in
Toronto.
Most important, I am the
parent of a child with a developmental disability, Nancy, who is
now 25 years old. I am profoundly interested in her support, her
care and her privacy.
The community living
movement was begun more than 50 years ago by parents of so-called
retarded children at that time. They had found that there were no
services in the community for their children. The only option
presented was to institutionalize their children, and they were
advised to pretend they never existed. This was not a path they
were prepared to accept, and so services and supports such as the
Toronto Association for Community Living began.
The province of Ontario
made a decision to provide these services and supports in the
community for individuals with a developmental disability through
transfer payment agencies that have a volunteer board of
directors. It entered legal agreements with respect to the
quality and quantity of service being purchased. The
sophistication of these organizations varies greatly from
organizations that would operate a single program at one location
to organizations, like the Toronto association, that operate a
multitude of services at numerous locations. Virtually none of these services have
medical professionals on staff.
As stated in the opening
remarks, we do not see ourselves as a group that should be
covered by the legislation. We do not generate medical
information. We do not provide a diagnosis and we do not
recommend treatment. We provide supports that allow the
individual to live, work and enjoy leisure time in his or her
community. The only medical files we have would be second or
third generation and used solely to assist staff in ensuring the
person lives in a safe manner in his or her community.
All files pertaining to an
individual being supported are kept confidential in a safe
location. The majority of the organizations represented by OACL
and OASIS would have medical information as a hard copy in the
person's file. This information would have been obtained with
consent, either from the individual, the parent or guardian, or
the substitute decision-maker for the individual. This
information could be kept in a program location or a central
location, depending on the size and sophistication of the
organization providing the service. In most cases, only a summary
or the medical direction would be noted in a computer file. As
stated before, most information would be provided as hard copy
and attached to a master file.
1230
We're suggesting that the
hardships placed on voluntary organizations, which do not have
the means of generating more revenue except by contract changes
with the Ministry of Community and Social Services, are
unacceptable. Our experience has been that when other ministries
or organizations have legislated or levied second-party
increases-such as workplace hazardous materials information
systems, pay equity, liability insurance increases, fuel rate
increases-these increases haven't been recognized by the funder.
This leaves the transfer payment agency in a position of having
to cut services, deny services or pay their staff at a level that
ensures an exceptionally high turnover rate for staff.
I'd like to tell you some
of the practical effects this legislation would have on services
for people with developmental disabilities at a large association
like the Toronto association.
First, computers and
databases: during last year's Y2K crisis, the Toronto association
had to embark on the expensive task of replacing its
non-compliant computer system. We elected to develop software
that allows our services to share information and allows
inputting to be done at a person's home, to ensure that staff
working with an individual have the information necessary to
provide the most appropriate support, and to do this as
efficiently as possible.
While the Toronto
association did receive some additional funding, the cost of this
change was primarily covered by the Toronto association. While
this did not compromise direct service, it was only accomplished
by holding vacancies of management staff and stretching everyone
to take on additional extra duties.
In the proposed legislation
section 13 states that the Toronto association would have to
comply with whatever electronic transfer requirements are
prescribed in the regulations. It will be some time before the
regulations are ready for review, but how can we be certain that
they will not impose demands that cannot be accommodated by our
new system? After all the efforts to create a system that really
works for the individuals and families we support, what new
parameters will it be forced to meet? More important, will it
require increasingly scarce resources to be reallocated to
meeting the needs of the computer system and consequently away
from the primary goal of providing quality support services to
people with developmental disabilities?
The second practical issue
is one of fundraising. It's one of the critical issues facing
agencies like the Toronto association. It's the need to raise
funds and be less dependent on the taxpayers of Ontario.
Fundraising has become a very important component of the agency,
and direct mail campaigns are an important part of revenue
generation. The proposed legislation requires that agencies
provide written notice that their information will be used or
disclosed for fundraising purposes at the time it is
collected.
The problem is that this
clause prevents us from calling family members to ask for a
donation if we did not inform them in writing that their
information will be used or disclosed for fundraising purposes.
It should be pointed out that family information is routinely
gathered at the first point of contact, and this is a
particularly sensitive time in developing a relationship between
the intake worker and the person and their family. We would also
have to ensure that the database can reflect who has consented
and who has not.
That brings us to the third
issue, which is consent. Consent is an issue of some concern in
the field of developmental disabilities. It's always difficult to
determine who has the capability or the capacity to provide
consent. We deal with concrete tasks around medical care, and in
that case people with developmental disabilities can often
provide consent. When we deal in abstracts, such as, "understand
the subject matter ... and to appreciate the reasonably
foreseeable consequences," which is section 54, it becomes
increasingly difficult for many individuals with a developmental
disability to provide informed consent. The legislation does
recognize the variable nature of this in that the ability to
provide consent may vary with respect to specific pieces of
information and to the changing time of consent.
On a practical level, since
we hold many pieces of health-related information on behalf of
the individual, we will need to itemize who gave or withheld
consent on each, and if the consent is time-sensitive due to the
person's changing capacity and/or capability. This would be a
huge task.
These are just three areas
where the Toronto association will experience difficulty in
implementing the proposed legislation. I am certain that similar
associations and agencies will have substantially the same
problems.
In summary, we do not support the concept that
disability equals an illness. We think that a supportive
community makes the best safeguard a person can have. I said
before that my daughter needs privacy and respect, but she needs
it as a regular citizen does, not because she will need services
of associations like the Toronto Association for Community
Living.
What is most distressing is
that effort, energy and resources will be expended to comply with
legislation that will not substantially improve the quality of
life for people with developmental disabilities and will drain
away much-needed funds from services which we so clearly and
desperately need.
I therefore ask, together
with the umbrella organizations-the Ontario Association for
Community Living and the Ontario associations supporting
individual services-that you exempt agencies supporting people
with developmental disabilities from this legislation. Thank
you.
The Chair:
That affords us just about a minute and half per caucus for
questioning, and this time we'll commence with Mr Wood.
Mr Wood: I
got the impression from your presentation that you didn't have a
fundamental objection to the bill but were concerned that you
would not have resources with which to be able to implement it in
the work that you do. Was I correctly picking up on that?
Mr Kyle:
We haven't taken the time to do the analysis of what we would
like to see changed, to put those comments forward on what we
would like to see changed. Fundamentally, we would like to ensure
that there's protection within the health services in the
province and would encourage any work that can be done to ensure
that.
Mr Barber:
We're just not a medical service agency and, therefore, if we did
have to put it into effect, we would think, do we have to hire
doctors and nurses to ensure that the information is correct or
are we going to need computer systems? It's beyond most small
agencies-even large agencies-to implement.
Mr Wood: I
got the impression that at the moment you don't have much of a
handle on the cost to you if you did come within this regime.
Mr Kyle:
Only that it would be more than we've got available in reserve.
The point is that other developments within our sector and
additional costs have been just crushing the organizations in
recent years and we see this as another one that will be piled
on. We really don't see the benefit of connecting these
requirements to our services. Essentially, the safeguards that
this is trying to ensure will be ensured through the medical
systems that people are connected to. We don't provide those
services, so it would be a duplication of the protection to
connect them within our sector.
Mrs
McLeod: I certainly hear your concerns about cost
implications. I can assure you, if government were to require
health care providers to put all of their records on to an
electronic base, they would hear from a lot of people about very
significant cost implications.
I did want to ask you about
the basic concern you have with inclusion, because you're not the
providers of health care. You serve a very different role with
your community. You are, nevertheless, holders of individual
health records, are you not, or is that in fact not true?
Mr Barber:
The staff would have information like they don't eat lima beans
or they're allergic to tomatoes, just day-to-day information that
a parent would have for their own children, that they would know,
and if a babysitter came in, they could say, "Don't let them eat
this and be careful of that." It's not real, hard medical
information.
Mr Kyle:
In no case that I'm aware of do we have the transfer of medical
records from a physician to our services, for instance. It would
be notes for proper care of people that we keep on record-some of
those health-related, obviously-to make sure that people are
getting the care and support they need.
Mrs
McLeod: So you would consider yourself a recipient, as
defined under this legislation, rather than the custodian of
health information.
Mr Barber:
Yes.
Mrs
McLeod: Are there protocols within the two acts you are
governed by that would deal with the protection of individual
sensitive information?
Mr Kyle:
Yes, there are some. If there is any concern that there are
inadequate protections, I think they can be dealt with through
MCSS rather than through this legislation through the Ministry of
Health. But there are currently some protections within MCSS.
1240
Ms Lankin:
I appreciate your comment that disability is not equal to illness
and your request to be exempted from the legislation. If I can, I
want to suggest that I don't think the ministry ever intended to
suggest that. Including your organization under "health
information custodian" is because the bill is actually set up to
define where health information may be stored and then how you
collect it, disclose it, have access to it.
I'm going to ask you to
turn that on its head because I think where we should be ending
up is with legislation that says health information is private
and should be protected, and there should be rules that apply to
it wherever it is stored, not because it's in a health
facility-whether it's in an employer's files or whether it's in
an insurance company. That may be broader than others are
prepared to go, but the concept being this is about health
information and how it is protected.
That being the case, I am
aware, for example-and you may have heard this-of the incident
where the organization had a labour dispute on and something was
happening. The executive director took the files and tossed them
out on the lawn and there was private information in there. It
was occasioned by a labour dispute. However, the result of it was
lack of appropriate care and attention to clients' personal
files, within which are some aspects of personal health
information. We would all say that's not appropriate. But there's
not clear law that governs it in some of the organizations, for
example, that you represent.
Could you undertake to go back and discuss with
the staff in the various residences what kind of health
information-examples, not detailed charts-may be contained in a
client's personal file that is kept on-site? That might help us
look at to what degree should any of these protections apply to
the business that you're doing in providing daily supports to
individuals. I'd just ask if you could do that.
Mr Kyle:
That's a fair request. We could do that, yes.
Mr Barber:
I can say that we do have very strict policies concerning
confidentiality.
Ms Lankin:
But there's no consequence that an individual has other than the
goodwill of the organization, and there is tremendous goodwill in
your organization. But when it's subject to small-c corporate
policies set by boards, that's subject to change. When it's set
in law, it's a right that's guaranteed to the individual. The
whole premise here is about health information privacy being the
right of the individual.
Mr Barber:
I think we're required by the Ministry of Community and Social
Services to have such policies on confidentiality.
Mr Kyle:
As I said earlier, I think in order for us to have continuity of
that, it seems appropriate to me that those safeguards be
extended from the existing policies within MCSS. If they're-
Ms Lankin:
On that point-
The Chair:
I'm sorry, Ms Lankin; you're well over your time. Thank you both,
gentlemen, for coming before us here today to make your
presentation.
DAVID PRICHARD
The Chair:
Our next presentation will be from Mr David Prichard.
Mr David
Prichard: Good afternoon, Mr Chair and members of
committee.
The Chair:
Good afternoon. Welcome to the committee.
Mr
Prichard: I appear before you as a citizen. I have no
particular qualifications in law or medicine and I won't pretend
to interpret on that. I do, however, have grave concerns. You
will probably hear me make reference to certain addiction
programs. I have over 20 years in a particularly well-known
organization. I think the fact that I once drank at Molly `n' Me,
and the bikers were afraid of me, may testify to how successful
those programs are. Having said that, I neither represent nor
speak for any of these organizations.
It is to be noted that for
the purposes of this proposed act exceptions cover individuals
like aboriginal healers, those with a religious mandate, while
not touching on a variety of self-help organizations such as
Alcoholics Anonymous, Narcotics Anonymous, support groups for
cancer and other ailments. That the addiction research centre in
Toronto has discontinued its outpatient program due to the fact
that such organizations have a better rate of recovery is an
indication that they do have a medical, therapeutic effect,
though it is not the intent of such organizations, nor it is that
they would they consider themselves to be medical practitioners
of any description.
However, whether it be for
the purpose of lifting the scourge of substance abuse or for the
relief from some other ailment, such organizations succeed by
members freely exchanging information about their own conditions,
what they do to cope with and alleviate their conditions. Were a
fee involved with such organizations, members would fall under
the purposes of this act, as information of a medical nature is
often exchanged in such venues: one sufferer might identify with
the experiences of another. Yet should a member of one of these
organizations elect to set himself or herself up as a lay
therapist and charge a fee, they are considered a practitioner or
health information custodian.
This bill does not seem to
address the fact that many lay therapists comprise a broad gamut
of services in our society. It would appear that simply accepting
a fee, under the definition of this bill, infers professionalism.
The fact of the matter is that pet care providers in our society
face more stringent regulation than lay therapists. While some
practitioners have banded together to provide professional
associations, and the government currently explores the field of
naturopathy, it remains that there are no statutory regulations,
no standards in training or education, or avenues of redress
against such practitioners save the courts. Nowhere is this more
particularly evident than in the field of the mental health lay
therapist.
With a great many
individuals turning to alternative therapies, such roles and
services are currently being studied by both the conventional
medical profession and Legislatures for inclusion into the broad
spectrum of treatments. Central to the debate is that many
therapies offered are untested and unproven. It is of grave
concern that this bill might lend to unqualified and untrained
individuals a professionalism both before the public and the law
that is neither earned nor warranted.
The relationship between
patient and physician is by and large sacrosanct. We have seen in
the past arguments regarding the intrusion of medical funders,
either public or private, into that relationship. It has also
been legislated that physicians are required to notify
authorities should they believe their patient presents an
immediate threat to another individual. Yet this bill does not
seem to address the fact that both the medical practitioner and
the patient may present a threat to another individual. Many
self-help groups have an axiom that a person's habit affects 20
to 25 other people-spouse, offspring, employer etc.
We have seen in recent
years, particularly in the alternative community, treatments
whose longevity and objectiveness seem to have more in common
with the fashion industry than the medical. It seems that every
other day one can pick up a newspaper to learn that last year's
research fact is now a blunder.
With established medical
treatments, there is some recourse through self-regulating bodies
and articles of law. With alternative practices, one can only
fall back to the law. Within such practices there ranges
everything from
peer-reviewed experimentation to what amounts to little more than
medical fads. The issue is, at what point privacy and privilege?
Do we grant to the unregulated, and perhaps even untrained,
therapist that accorded to the physician who has years of
training?
In any person's life there
are a host of people who might be concerned or affected by their
welfare: a parent of an adult child, a partner, an employer or a
friend. It may be argued that they need access to medical records
or to be able to alert a competently trained third party to
review such records. Much about the practice of medicine is
subjective. This is particularly true of those who practise in
the various disciplines of mental health. The question that needs
to be asked is, will this statute hamper the inquiries of a third
party who has reason to question a course of treatment?
Also to be considered is
the third party who is affected by the ailment of another. An
excellent example of this might be the experience in New Zealand
regarding the now-discredited repressed memory syndrome. In a
decade, approximately 80,000 cases were discovered, largely
through the lay therapy community. The vast majority of sexual
abuse charges either didn't get as far as the courts or were
dismissed. When the government of New Zealand ceased awarding
compensation to alleged victims, the caseload for this syndrome
all but vanished. What of those falsely accused by this fad?
Would this bill endanger their defence? In seeking to preserve
the patient-provider relationship as one of trust, does it do so
at the expense of another party's wealth, health or liberty?
Simply accepting a fee for
a service does not make one a health care provider, as the bill
seems to do inadvertently. At worst, it would appear to give
licence to quackery. A question facing this committee is, should
this bill offer the protection of law to the unregulated?
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The issue of third parties
needs to be addressed more thoroughly. Whatever agency, be it the
police, a concerned relative, or an another individual affected
by another's ailment, should not have unwarranted access to the
provider-patient relationship. Neither should such information
remain untouchable. We currently have in place a system for
dispute resolution called the courts.
This legislation needs to
reflect that those who have just reason, as determined by the
courts, may seek access to such information as required for their
legitimate purpose. Without such safeguards we are not protecting
the medical relationship in society, we are isolating it.
Daily we hear of some new
medical advance, a stride that has portent for our well-being.
The law should not inhibit such change, but it may well be it
hampers, either to institution or individual, the ability to
question or examine the practice of health care and the changes
which are thrust upon us, many of which are untested.
As members of this
committee will be aware, there are ongoing debate and rulings at
the level of the Supreme Court of Canada as to the nature of what
may be admitted as evidence and the extent to which a patient's
medical records may be accessed. At the other end of the spectrum
we have a very fluid media in which diagnosis by Oprah and
prognosis by Roseanne seem to permeate the public mind.
Unproven and untested
therapies are presented to the public as solutions to their
ailments. While they may be abhorrent to the medical profession,
they can be used by both the unscrupulous and the sincere as
treatment-treatment which history shows us may bear more harm
than good.
It is of the utmost
importance that any measure drafted by this Legislature not
conflict with federal legislation and be fluid enough to reflect
changes to legislation at that level. Nor should it be written in
such a way as to be seen to offer a cloak to the quack. Simply
accepting a fee is not the practice of medicine.
If I may just for a moment,
I do have a particular reason for wishing to address this. The
matter is before the courts. I don't want to seem secretive but I
trust you appreciate I have to be somewhat circumspect.
About 15 years ago, I dated
a woman who was a lay therapist. We split apart for a number of
reasons. One basically was that you couldn't say good morning
without there having to be some sort of psychological reason, and
I didn't find that particularly healthy myself. That she took up
with an active manic-depressive as her next partner sort of
testified to my belief that she was looking for a live-in
patient, not a live-in partner.
Just by coincidence, 15
years later I rented one of my apartments to a woman. We got on
famously. Her sons and I got on. It got to the point that I saw
her come home from school with the boys and she looked absolutely
beat. I told the boys, "Come down for breakfast tomorrow. Let
your mother sleep in," and that started several months of their
coming down and basically I was doing dinner. I enjoyed it
thoroughly. During the course of one meal it was discovered that
I had thrown over her lay therapist. The day after that this
family never came to eat in my place again. You can't tell there
was not some influence by the lay therapist. I was astonished to
learn several months later from a mutual acquaintance that my
tenant had told him that I had a history of being a stalker. I
have no history of being a stalker. It came from the therapist,
as far as I'm concerned.
The point I am trying to
make here is that this woman is completely unregulated, she's
completely untrained and-this is my own personal opinion-she's
not particularly healthy. I have, in my case that is ongoing now,
no recourse. There is no public body. She belongs to no
institution. There is no way of going after her except through
the courts. This woman, my tenant, was most horribly treated by
her ex, the most severe domestic abuse I have ever seen without a
fist actually being raised, so much so that-and I found myself in
that uncomfortable position of, how far can you go in to
intervene in another person's life? He drove her into the Clarke,
and he told several of us that he intended to drive her into the
Clarke. She was there for almost five months on a suicide watch.
I don't believe this therapist is particularly good for this
woman, but it's beyond my control. She has since moved out. She
has a life of her own.
But as I say, there came a legal matter between us, which is
ongoing in the courts. I have no recourse to go after this woman.
Even while this woman was under her treatment and we were on good
terms, there was no third party to which I could say, "Hey, I
think something's amiss here; this woman is not getting
treatment."
I think the regulation of
lay therapists, be they mental or naturopaths or whatever, is
something that may not be within the jurisdiction of this
committee, but I think it is something that the government needs
to examine very carefully. I believe what is in the jurisdiction
of this committee is that those who are not qualified, those who
do not have any sanctions or training, those who might be
just-
Friends of mine who are
medical professionals tell me they get bulletins from things like
Redbook and Good Housekeeping, when they're having articles on
health, to alert the doctors that they're going to have a lot of
patients coming in and discussing these issues. Somebody reads in
Redbook that they might have this, and they're in to their
doctor's two weeks later. That's the effect. I'm trying to put it
in a flavour that the media-we've seen Oprah's book-of-the-month
club. I've never enjoyed any of her choices, but that's another
story. But then do we give credit to her medical theories as
well? I'm using that as an example-I don't mean to slight her-of
just how invasive and how trendy certain things have become in
our society in regard to medical treatment. I have great fear,
and this bill to me reads, that simply accepting a fee makes
somebody a medical practitioner. It could very easily serve to
cover the quack, and I would like to see that avoided.
The Chair:
Thank you very much, Mr Prichard. We appreciate you bringing that
perspective before the committee here today.
ONTARIO HIV TREATMENT NETWORK
The Chair:
Our final presentation today will be from the Ontario HIV
Treatment Network. Good afternoon and welcome to the
committee.
Ms Patricia
Balogh: Thank you, Chairman Gilchrist and members of the
committee. I am Patricia Balogh, the executive director of the
Ontario HIV Treatment Network. I'm joined this afternoon by the
co-chair of our board of directors, Mr Derek Thaczuk, and by one
of our consultants, Mr Ed McDonnell.
It's a privilege to address
the standing committee on general government this afternoon on
behalf of the Ontario HIV Treatment Network. To begin with, I
wish to state that the OHTN compliments the government for
introducing the legislation, which has been so much needed in
Ontario since Justice Krever's report of the royal commission on
confidentiality of health information back in 1980.
It's apparent that the
protection of confidentiality and privacy of patient information
has been largely based on ethical principles and professional
codes of conduct for the last 100 years or so. In this day and
age, this approach no longer provides an acceptable standard for
the public, for health care providers, researchers and other
stakeholder groups throughout Ontario.
Regretfully, repeated
attempts to address this issue by successive governments over the
last 20 years have been to no avail. Given advances in medical
care and treatment, notably in the field of HIV-AIDS, the
complexity of the current health care delivery system and
progressive developments in the electronic transfer of health
information, there certainly, from our perspective, is an urgent
need for legislation which protects individuals and the public at
large.
In deference to those of
you who may not be familiar with the Ontario HIV Treatment
Network, I wish to provide a brief overview of our agency. The
OHTN is a non-profit corporation funded by the Ontario Ministry
of Health and Long-Term Care. Our board of directors was mandated
by your government to pursue three initiatives in order to
promote timely and state-of-the-art health care for people living
with HIV-AIDS in Ontario. These three programs include our
investigator-driven research program, which supports innovative,
Ontario-based HIV research in the areas of basic clinical,
epidemiological and socio-behavioural science. Since our
inception, our board of directors has committed over $12.4
million to support such research in the province. In addition, we
have endowed an HIV chair at the University of Toronto.
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Our second program, the
priority initiatives program, distributes funding to support
time-limited initiatives which address priorities identified by
our stakeholders, again to enhance care and treatment for people
living with HIV.
The reason that brings us
in front of you today is our third program, the HIV information
infrastructure program, which I shall subsequently be referring
to as HIIP. This is an innovative program which uses information
technology to improve care and treatment and to increase the
security and enhance the management of personal health
information. This program consists of three parts: a clinical
management system, which is an electronic health record equipped
with decision-making tools to assist the physicians in delivering
improved care; a central research database, which is a voluntary
and anonymous database that will be used by researchers to answer
important questions about HIV in Ontario; and finally, a secure
communications network that links health care providers and other
institutions with one another to ensure more efficient and secure
communications between and among HIV care providers.
The OHTN is extremely proud
that our HIIP project has been endorsed by the Ministry of Health
and Long-Term Care's smart systems for health as one of their own
priority initiatives. Earlier this week it was gratifying to
attend the Honourable Minister Clement's inaugural address at the
ITAC Ontario health care conference, where he conveyed the
government's commitment to supporting projects such as ours.
Now I turn to the draft
legislation which brings us together today. My comments, and our
written document, which has been submitted to assist you in your
deliberations, reflect
the wisdom gained by the OHTN as it has developed and implemented
HIIP. In addition, our comments are intended to convey our desire
to participate in your ongoing efforts to design and pass
legislation which effectively addresses the complexity of this
issue.
The OHTN brings a unique
perspective to this debate, reflecting the diverse composition of
our board and other governance structures, and our mandate to
enhance the participation and collaboration of those with
relevant experience and expertise. I refer to people living with
HIV, their health care providers, researchers and others
involved; all of these groups helping to make Ontario a leader,
both nationally and internationally, in HIV care, treatment and
research.
I wish you to note that we
generally support the essence of the submissions which you have
received from the Privacy Commissioner of Canada, the Information
and Privacy Commissioner of Ontario earlier this morning, the HIV
and AIDS Legal Clinic (Ontario) and the Ontario Medical
Association. I will not repeat the concerns about Bill 159
expressed in those particular submissions but urge the committee
to require amendments to the legislation that respond to the
criticisms outlined by these notable individuals and
organizations.
It appears that Bill 159
may intend to exclude anonymous research databases, including the
HIIP clinical research database, from its provisions. However,
given the definition of health information custodian as outlined
in subsection 2(1), paragraph 13, the true reality appears
ambiguous. Neither the OHTN nor the public has any way of knowing
at this important juncture whether our CRD will be subject to
Bill 159 or not. Furthermore, it appears there will be no
opportunity for effective public scrutiny by our stakeholders of
a unilateral decision by the government after Bill 159 has passed
not to prescribe the OHTN as subject to the regulations.
The OHTN acknowledges that
the electronic sharing of personal health information raises
major privacy issues. For this reason, we have dedicated three
years during the development of HIIP to judicious consideration
of these issues. With the active participation of all of our
stakeholders, including our colleagues at the AIDS Bureau in the
Ministry of Health and Long-Term Care, we have developed policies
which include-and there are so many of them at this point, I'll
just mention two particularly relevant here-consent and dispute
resolution. We have developed, I would say, state-of-the-art
policies and procedures for those involved in our CMS and our CRD
in both of these areas.
Aside from the policy
aspects, in addition, we are employing state-of-the-art
technological functions, including public key infrastructure,
pseudonymization and encryption to ensure maximum protection of
the data voluntarily, which is being entrusted to us by people
living with HIV. Given the advanced stage of our HIIP project, we
contend that section 13 should be amended to specify the
requirements to be met by health information custodians, rather
than deferring these to be prescribed in the future by
regulation.
We have serious concerns
that the bill includes excessive ability to deviate from the
established roles by virtue of regulations. Throughout the
legislation, significant issues are deferred to be addressed at a
later date in the regulations, leaving too much decision-making
in a non-public forum.
I also wish to note that
the use and disclosure of personal health information as
described in sections 27, 29, 30, 31, 33 and 36 is of grave
concern to the OHTN. Certainly, as a health care consumer myself
and a professional social worker who has worked for 30 years in
this province in a variety of clinical, administrative and policy
positions, I must say I am truly dismayed. The breadth of Bill
159 in permitting the use and disclosure of personal health
information without consent is not acceptable.
To illustrate our concerns,
let me explain. The CRD component of HIIP is the continuation and
expansion of an earlier database, the HIV Ontario Observational
Database-HOOD, as some of you may be familiar with it. It gained
full political support from the Minister of Health from its
inception back in 1992. Due to the sensitivity about a person's
HIV status, the high level of voluntary participation which was
achieved through the forerunner of HIIP was achieved for one, and
only one, reason: complete security of the contents from
disclosure for any purpose other than research. That was agreed
to at the time by everyone concerned, including the Minister of
Health of the day.
The board of directors of
the OHTN and all stakeholders associated with us retain a strong
ethical and moral commitment to this tenet. To destroy client
confidence in this fundamental premise, which Bill 159 has the
potential to do, will deprive Ontario of one of the most robust
HIV databases which exists in this country, one which your
government is funding us to enhance, a fact for which we are
extremely grateful.
As others have told you,
legislation which threatens the physician-patient relationship
will not only diminish the quality of health care but, in our
opinion, also prevent Ontario from continuing to position itself
as a world-class leader in HIV research.
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The OHTN strongly supports
the principle that collection, use and disclosure of personal
health information related to research must be subject to
approval of a properly constituted research ethics board. In the
absence of any legislated requirements to do so, we have already
sought approval for our CRD from the University of Toronto, as
did our forerunner, HOOD, back in the early 1990s. In addition,
our director of science requires university REB approval to act
as principal investigator for our CRD due to his own academic
affiliation with the university.
Section 32 requires REB
approval from some other institution without any obvious benefit
for a duplicate review. In our opinion, Bill 159 must be amended
to authorize REBs established by Ontario universities to approve
projects for the purposes of this legislation.
The broad access of information about HIV status
of individuals provided by section 31 in our opinion is
completely at odds with clear restrictions imposed upon the
disclosure of such information by Ontario's current public health
legislation, the Health Protection and Promotion Act. The OHTN
submits that the provisions of the HPPA reflect a much better
understanding of the serious policy implications to individuals
and to public health of a legal framework such as Bill 159, which
fails in fact to protect this information.
In summary, I submit that
Bill 159 is flawed. However, the importance of passing judicious
personal health care legislation to protect the public, including
people living with HIV, health care providers and researchers,
cannot be denied. I commend the government for its commitment to
this endeavour.
In closing, it is essential
to reflect upon the fundamental importance of protecting the
privacy of personal health information to ensure the Ontario HIV
Treatment Network's ability to fulfill its objectives: to foster
excellence in the delivery of health care to people living with
HIV in Ontario and to the research related to those folks. The
ability of people living with HIV to speak frankly and openly
with their health care providers, and the confidence that they
can do so without fear of state and other intrusions upon the
integrity of that relationship, are the cornerstones of our
efforts at the OHTN. Without these, the OHTN and many other
organizations and service providers in Ontario will undoubtedly
be compromised and potentially fail in their undertakings.
Thank you for your
attention. Mr Chairman, I wish you and the committee members well
in your deliberations.
The Chair:
We have about two minutes left. The next party up in rotation is
the NDP.
Ms Lankin:
In your conclusion you set out a number of principles around the
protection of information in databases. Without going through it,
I want to suggest to you that in various parts of the legislation
it attempts to provide those exact protections. But you're right
in identifying all of the regulation-making power and the
directed disclosures as pulling the rug out from under that if at
some time in the future some government chose to do that. We've
heard that clearly with respect to a number of aspects of the
legislation. We're going to have to turn our minds to that.
You also indicated that you
supported presentations by a number of previous groups, including
the OMA. The OMA very clearly said they don't support lockbox
provisions which allow people to have that final control over
their information, and they're opposed to standardization
attempts for charting.
Some of what you and your
predecessor organizations have been able to accomplish in
standardization of treatment guidelines and protocols, all of
that, has been so incredibly important that there is
standardization and the ability to transmit standardized
information there. If we take a look at primary care reform or
particularly at disease management, those principles for that
sharing of information are important not to compromise individual
control. My question to you is, in terms of health practitioner
control, should the health practitioner be able to stand in the
way or should all that control just rest with the patient? So do
you support a lockbox and do you support standardization of
charting if consent is given to transmit standardized
information?
Ms Balogh:
The authority and responsibility should be vested in the patient.
That's the fundamental position of the OHTN. In terms of the
lockbox, Ed, did you want to make any comment?
Mr Ed
McDonnell: I think one of the things that we've grappled
with is striking that balance between health care providers
needing to have information-other presenters made that point
earlier today-and maintaining control of the individual's own
personal health information. I think the lockbox itself would be
one of the things we rejected in the model of the electronic
medical records that we developed at the OHTN through HIIP. I
think it's due to the fact that we want the health care provider
and the patient to have to come to accommodations about what
information is shared and how that's done. So we've provided a
flexible model through the technology, but I don't think we've
come to a conclusion in terms of where to strike the balance on a
lockbox.
The Chair:
Thank you all for appearing before us today. We appreciate your
presentation.
Committee members, I want
to thank you all for your participation in the quite a few days
that we've applied ourselves to this task. Notwithstanding the
fact that we are not empowered to sit again as a committee until
the House reconvenes, we have of course discussed the
opportunities to meet to review the presentations that have been
made, the synopsis that the research officer will be providing
and whatever other thoughts folks like Ms Cavoukian and the
ministry would like to provide. So on the understanding that
those opportunities can and will take place, I just wanted to
thank everyone.
Mrs
Pupatello: Just before we leave-hopefully, we'll go into
subcommittee work-could I ask research one additional question?
It was concerning to me, the number of deputations that came
before this committee that didn't seem necessarily to fit just
into the discussion of privacy. Those were the alternative
therapy discussions that have come forward in a number of
presentations. I wonder if I could ask the research officer to
provide us with a list of where within government, within which
appropriate ministry division, we could have that discussion. It
seems as though these particular groups have come forward to try
to fit this discussion about appropriateness of therapies and
their acceptance into the privacy discussion. My first response
has been each time that there has got to be a different place
that that discussion can be had, and I'm not certain what it is.
Could the researcher provide us with that?
The Chair:
Thank you. Are there any other questions for the researcher
before we rise? Again, thank you, everyone. Officially, we will
stand adjourned until the House reconvenes.
