Information Privacy Act, 2000, Bill 159, Mrs
Loi de 2000 sur la confidentialité des renseignements
sur la santé, projet de loi 159, Mme
HIV and AIDS Legal
Mr Matthew Perry
Dr Ken Shumak
Dr Eric Holowaty
Dr Verna Mai
Ontario Coalition of
Dr K. Sonu Gaind
College of Medical
Radiation Technologists of Ontario
Ms Sharon Saberton
Ms Debbie Tarshis
College of Nurses of
Ms Mary MacLeod
Mr Bill Campbell
Toronto Academic Health
Dr Jack Williams
Ms Gail Czukar
Institute for Work
Ms Jane Bartram
Dr Sheilah Hogg-Johnson
Ms Jennifer Payne
Dr Helena Jaczek
Ms Manuela Di Re
Ontario Long Term
Ms Vida Vaitonis
Ms Lois Cormack
Mr Ian Murray
Mr Stanley Burke
Mr David Baker
Ms Kate Adams
Psychologists of Ontario
Dr Catherine Yarrow
Mr Gordon Rimmer
Dr Ralph Brooke
Mr Frank Bevilacqua
Alliance for Life
Mrs Jakki Jeffs
Mr Geoff Cauchi
Clinical Evaluative Sciences
Dr Andreas Laupacis
Dr Jack Williams
Baycrest Centre for
Ms Gwen Yacht
Nurses Association of Ontario
Ms Joanne Young Evans
Federation of Health
Regulatory Colleges of Ontario
Mr Jaro Wojcicky
Mr Richard Steinecke
Ontario College of
Ms Tina Langlois
STANDING COMMITTEE ON
Mr Steve Gilchrist (Scarborough East / -Est PC)
Vice-Chair / Vice-Présidente
Mrs Julia Munro (York North / -Nord PC)
Mr Toby Barrett (Norfolk PC)
Mrs Marie Bountrogianni (Hamilton Mountain L)
Mr Ted Chudleigh (Halton PC)
Mr Garfield Dunlop (Simcoe North / -Nord PC)
Mr Steve Gilchrist (Scarborough East / -Est PC)
Mr Dave Levac (Brant L)
Mr Rosario Marchese (Trinity-Spadina ND)
Mrs Julia Munro (York North / -Nord PC)
Substitutions / Membres remplaçants
Mr Doug Galt (Northumberland PC)
Ms Frances Lankin (Beaches-East York ND)
Mrs Lyn McLeod (Thunder Bay-Atikokan L)
Mrs Tina R. Molinari (Thornhill PC)
Mr John O'Toole (Durham PC)
Mrs Sandra Pupatello (Windsor West / -Ouest L)
Mr Joseph Spina (Brampton Centre / -Centre PC)
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
0904 in committee room 1.
PERSONAL HEALTH INFORMATION PRIVACY ACT, 2000 / LOI
DE 2000 SUR LA CONFIDENTIALITÉ DES RENSEIGNEMENTS PERSONNELS
SUR LA SANTÉ
Consideration of Bill 159, An
Act respecting personal health information and related matters /
Projet de loi 159, Loi concernant les renseignements personnels
sur la santé et traitant de questions connexes.
The Chair (Mr Steve
Gilchrist): Good morning. I call the committee to order
for the fourth day of hearings on Bill 159, An Act respecting
personal health information and related matters.
HIV AND AIDS LEGAL CLINIC (ONTARIO)
We'll call forward our first group of presenters, the HIV and
AIDS Legal Clinic (Ontario), if they'd come forward to the
witness table, please. Just a reminder that we have 20 minutes
for your presentation for you to divide as you see fit between
either a presentation or question-and-answer period.
Perry: Thank you. Good morning, Mr Chair and members of
the committee. My name is Matthew Perry, and I'm a community
legal worker with the HIV and AIDS Legal Clinic (Ontario). We are
a poverty law clinic serving the legal needs of low-income
Ontarians living with HIV or AIDS. We provide representation to
individual clients and public legal education and community
development for the betterment of the HIV-affected communities.
We also participate in law reform activities, which is part of
the reason I am here before you today.
We welcome the opportunity to
speak to you today and express our concerns with respect to Bill
159. I have brought with me a written submission, which should be
before you, and it will provide more detail to my oral comments
here this morning. The submission was authored by Ruth Carey, my
boss. She unfortunately couldn't be here today, so you get
People living with HIV/AIDS
have a pressing and substantial interest in any legislation
regulating the collection, disclosure and use of personal health
information. When you live with HIV or AIDS, the accumulation of
sensitive health information becomes pervasive. An average month
can include multiple doctors' visits, trips to the pharmacy,
access to complementary medicine care, interactions with
government agencies, including community care access centres and
income support programs, to name just a few. Health records with
extraordinarily sensitive information are created and transferred
at an alarming rate. Bill 159 purports to regulate this
accumulation and flow of information. I'm here to tell you once
again that we have a bill which fails to accomplish this in a way
which respects, protects and upholds the privacy and
confidentiality of Ontarians.
I must begin, therefore, by
urging this committee to take very seriously the comments of the
federal Privacy Commissioner made to you earlier this month. We
were extremely pleased to see many of our concerns so clearly
stated in Mr Radwanski's presentation, and we are in agreement
with him when he told this committee, "I don't believe that a law
that is so fundamentally flawed in virtually every provision can
readily be fixed." Therefore, our first and fundamental
recommendation is that Bill 159 be withdrawn and the Ministry of
Health and Long-Term Care be instructed to redraft it. We would
further recommend that the model draft legislation entitled Model
State Public Health Privacy Act be the template for a new draft,
and the cite for this is in your package of information. This
model conforms with the Canadian Standards Association standards,
which form part of the federal Personal Information Protection
and Electronic Documents Act.
That being said, we have also
prepared recommendations to try and ameliorate the most egregious
harms which will occur if Bill 159 is passed. My comments this
morning will address four broad areas: the scope of this
legislation; permitted disclosures without consent; accessing
one's own health information; and remedies for breaches of
confidentiality. These submissions are by no means exhaustive.
Instead, we have concentrated on those areas for which our
expertise may be most helpful, and which are of most concern to
people living with HIV/AIDS that we represent.
With respect to the scope of
Bill 159, we submit that you were on a better track last fall. At
that time, we participated in consultations with the Ministries
of Health and Long-Term Care and Consumer and Commercial
Relations with respect to a broader privacy act to which the regulation of use, disclosure
and collection of personal health information would be a
schedule. Such a piece of legislation would govern both the
private and health care sectors and more readily meet the
"substantially similar" requirement in the federal legislation.
Unfortunately, that approach was abandoned and Bill 159 has been
tabled as independent legislation. We therefore strongly urge
that the regulation of personal health information only occur
when Ontario is prepared to proceed with general privacy
legislation for the entire private sector.
Our other concerns with
respect to the scope of the legislation relate to the way Bill
159 contemplates the regulation of information. Repeatedly and
consistently over the last four years we have urged you to craft
legislation so that privacy measures attach to personal
information itself, rather than selected people who have that
information. This would ensure that it is the information that is
protected and that the protection is in place no matter who has
that information. A health information custodian should be anyone
who comes into possession of personal health information about an
individual as a result of providing services to that individual
in circumstances such that a reasonable person would expect that
information to be kept confidential.
The concepts of "use,"
"disclosure" and "person who is employed by or in the service of
a health information custodian" in Bill 159 are far too broad.
Currently, for example, a disclosure of personal health
information by a care provider to a janitor in a hospital would
not be a disclosure under the act-they're both employees of the
custodian-or even to the volunteer in the gift shop. Because this
is not a disclosure, the prohibitions and protections concerning
disclosures do not apply. We have been called by a hospital, for
example, where the union representing janitorial staff filed a
grievance because the janitorial staff had not been warned that a
patient was HIV-positive. Management wanted to settle the
grievance by agreeing to disclose that information to janitorial
staff in the future. We reminded them that the doctor had a
obligation under the Medicine Act to keep that information
confidential. The janitorial staff had no need to know this
information for the purposes of the patient's care. We were able
to advise the hospital that they could not agree to disclose the
patient's status. That would not necessarily hold true if Bill
159 were passed. The definitions of "disclose," "use" and "person
who is employed by or in the service of a health information
custodian" need to be significantly narrowed.
In addition, sections 19 and
23, which leave the standards of confidentiality to regulations,
need to be amended to list minimal standards required to protect
confidentiality right in the act.
With respect to the area of
permitted disclosures without consent, I wish to emphasize how
important this is to people living with HIV/AIDS and to underline
the importance of informed consent. The CSA standards in the
federal legislation state,"when personal health information is to
be used for a purpose not previously identified, the new purpose
shall be identified prior to use. Unless the new purpose is
required by law, the consent of the individual is required before
information can be used for that purpose."
Bill 159 fails to meet this
standard. Section 25 leaves to regulation the circumstances in
which a custodian should give me information about anticipated
disclosures. For unanticipated disclosures, subsection 25(2),
also leaving the circumstances to regulation, says the custodian
need merely make a note of the use or disclosure, with the
requirements prescribed in regulation. There is no requirement to
inform me, let alone to seek my consent.
A significant number of the
permitted disclosures without consent in Bill 159 are intended to
cover current legislated mandatory reporting requirements or
disclosures. They should be redrafted to accurately reflect that
For example, 29(1)(d) allows
for disclosure in order to contact a friend or relative if an
individual is ill. There are already provisions for this
situation under the Health Care Consent Act. The provisions in
the HCCA are specific. Clause 29(1)(d) is far broader and
therefore jeopardizes the privacy and confidentiality of the
Clause 30(1)(a) is another
example, providing for disclosure if it is made for the purpose
of public health protection and promotion. Bill 159 allows for
much broader disclosures than are currently possible under the
Health Protection and Promotion Act. We already hear from health
care providers who think they should disclose information because
they think a third party might be at risk of transmission, which
may or may not be true. They know the rules of their college
prohibit this disclosure, but they call us to find out if they
can make the disclosure anyway. Under Bill 159, they just might,
with 30(1)(a) and the overly broad protections from liability.
But the HPPA already provides for such situations, and the net
effect of 30(1)(a) may be to keep people away from their
providers for fear that their information may be disclosed
without their consent.
Section 33 allows for
disclosure where the custodian thinks there is a significant
risk. I hear routinely that judges, crown attorneys and police
officers believe that, for example, being spat upon is a
significant risk of transmission for HIV. Many health care
providers are equally ignorant of the significance of risks of
HIV transmission. It's easy to see how this section might be used
to justify the widespread disclosure of information without
consent. Section 33 seems to be designed to address the issue of
duty to warn. This is a very sensitive area of law, and one which
the Supreme Court of Canada has specifically ruled on. Bill 159
seriously erodes the protections against disclosure available to
individuals, with the potential for devastating effects. You'll
hear examples later on today and throughout the next four days of
the ways this can occur. We recommend that clause 33(a) be
deleted, or at the very least redrafted to accord with the three-part test set out by the
Supreme Court of Canada.
Turning to the issue of
patient access, again I must emphasize what a significant impact
this has on PHAs-people with HIV/AIDS. PHAs constantly have to
access medical records in order to qualify or maintain
eligibility for insurance benefits and income support like ODSP
or Canada pension plan. Fees charged to get this information can
be completely out of reach for individuals of limited means and
compromised health. Bill 159 does nothing to make this situation
better, and in fact may make it worse.
Currently, section 36 of the
Mental Health Act and the common law, as well as the
freedom-of-information and municipal freedom-of-information acts,
provide for access to one's records. Under the Mental Health Act,
where a request for a record is made, the onus is on the
custodian to justify withholding this information if it thinks
that is necessary. Bill 159 would repeal section 36 of the Mental
Health Act and treat our personal health records as if they were
government documents-a fundamentally flawed approach. Access to
government records is a policy which promotes democratic values
and good government. Access to our health records is a legally
enforceable right arising out of the fiduciary relationship
between patient and health care provider.
First, there should be no fee
for making a request to access one's records. Second, there
should be a provision to waive the cost of providing access to
one's own records for certain individuals. We recommend that the
payment of a fee for copying shall be waived if the individual is
in receipt of social assistance or can otherwise demonstrate an
inability to pay. Someone on Ontario Works who is applying for
ODSP and needs to gather medical information is living on $520
per month. We see some hospitals charge as much as $180 for
copying 10 pages of a record. While subsection 47(10) provides
for a waiver of the cost of copying records, the criteria are
left to regulation. It is not sufficient to simply allow the
individual to examine the records for free by attending at the
facility. A number of people with disabilities would not be able
to participate in this means of access.
Limits on the number of times
one could access the same information are problematic. Many
inmates and homeless individuals have told us they've obtained
copies of records which were subsequently stolen, confiscated by
prison guards or simply lost. Rather than using subsection 47(6)
to permit the custodian to effectively ignore subsequent requests
for more information, there should be a mechanism for the
custodian who thinks someone is making repeated and vexatious
requests without good cause to apply to the commissioner for an
order stating that no further requests for that record be allowed
without the leave of the commissioner.
Finally, clauses 44(d) and
(e), allowing the exclusion from the access provisions of
personal health information of a type prescribed by regulation,
or information under the control of a class or classes of health
information custodians prescribed by regulation, are overly broad
and should be struck. The act provides overly broad powers to
exempt significant amounts of information from the access
provisions. Similarly, section 48 provides an overly broad and
lengthy list of reasons why a custodian might refuse to allow
access to one's own record, which are well beyond risks of harm
to oneself or to a third party. This is far broader than either
the draft Personal Health Information Privacy Act, 1997 or the
draft Health Sector Privacy Rules. The only recourse available
when denied access is for the individual to complain to the
commissioner. Thus the onus is placed on the individual to prove
why they should have access to a record and shifted from the
custodian to demonstrate why their withholding the information is
We strongly recommend that
the ministry be directed to provide a written justification for
each subsection of 44 and subsection 48(1), clauses (b) through
(i), including what harms to the patient they are designed to
address and alternative measures to address those harms, and
publish this information as part of a formal public notice and
comment process. As well, subsection 89(6) should be deleted,
restoring the provisions of section 36 of the Mental Health Act,
and thereby placing the onus on custodians to demonstrate to a
neutral third party that withholding of access is necessary to
prevent serious harm.
Finally, turning to the
remedies for breaches, I'll be brief, because there aren't really
any effective remedies here. Without Bill 159, individuals have
extremely limited remedies: complaints to colleges, and perhaps,
for the moneyed few, suits in malpractice, assuming the
individual is a regulated health professional. However, Bill 159
only provides for a complaint to the commissioner. This complaint
must be in writing and accompanied by a fee.
First of all, there should be
no fee. It is unconscionable that an individual whose privacy has
been breached must first pass the bar of being able to pay a fee
in order to access the beginnings of a remedy. Assuming you're
able to make a complaint, the commissioner has the power under
section 68 to make comments or recommendations on the privacy
protection implications of any matter that is the subject of the
complaint or to make an order to stop the collection of
information and to dispose of information collected in
contravention of the act. Alarmingly, there is no power to make
orders with respect to the disclosure or use of information; just
collection and disposal. This is ridiculous. Section 68 must be
redrafted to accord the commissioner the power to make orders
with respect to disclosure and use, as well as the collection, of
personal health information.
Privacy legislation in other
provinces includes protections against disclosure with remedies
for the individual. Manitoba and British Columbia, for example,
have established a tort of privacy, actionable without proof of
damages, where a person, wilfully and without claim of right,
violates the privacy of another. These provisions value privacy
and place paramount importance on protecting personal information. Importantly,
they also create an effective remedy for the individual whose
privacy was breached. Bill C-6 specifically provides for this
situation in subsection 16(c) by providing that the court may
"award damages to the complainant, including damages for any
humiliation that the complainant has suffered." Bill 159 only
provides for quasi-criminal prosecution for breaches of the act,
through the offences listed in section 73. These offences are
punishable only by a fine on conviction, which is payable to the
government, not the individual. Bill 159 provides no authority to
award damages to the individual whose information has been
handled in contravention of the act.
The commissioner must be
granted powers to award damages to the individual where a breach
has occurred, and the bill should also create a tort of breach of
confidence without proof of damage. We told you this three years
ago, and we're telling you this again. The commissioner herself
told you this a few weeks ago. Without effective powers, there is
little actual effect in having the privacy commissioner oversee
the legislation if it is passed as is.
As well, the commissioner's
discretion with respect to whether or not to review a complaint
is too broad. Currently, Bill 159 allows the commissioner to
decide not to review a complaint "for whatever reason the
commissioner considers proper." The procedure for conducting a
review is, like so much of the bill, left to regulation, thereby
keeping us in the dark about what the review would be.
Last but not least, I would
like to express our grave concerns about the protections from
liability outlined in section 75. This allows for protection from
liability for anything done, reported or said in "good faith"
that was "reasonable in the circumstances." The good faith
standard is purely a subjective one-my examples and others you
will hear in the days to come will readily show that-and the
reasonableness standard can be objective or not. The danger from
the perspective of people living with HIV and AIDS is that what
our community might think is reasonable will be ignored in spite
of its relevance. Improper handling of personal health
information should only be excused if a reasonable patient with
similar health problems and records would understand and excuse
them. Therefore, section 75 should be amended to say that a
custodian has a defence to the actionable tort of breach of
confidence without proof of damages if no damages arose as a
result of the disclosure and it was done in good faith and on
reasonable grounds in the circumstances. The custodian should
have the onus of that proof.
I can't emphasize enough the
negative impact that this legislation would have on people living
with HIV and AIDS in Ontario. Bill 159 does not adequately
protect personal health information. The federal Privacy
Commissioner has told you it fails to meet the "substantially
similar" criteria. It fails individuals by focusing on health
information custodians rather than focusing on the information
itself. It permits far too many exceptions to the general rule
that personal health information should not be disclosed without
informed consent. It unnecessarily complicates an individual's
access to their personal health information and makes it too
difficult to make changes to that information where there are
errors. Finally, it fails to provide the privacy commissioner
with the powers she would need to provide real remedies to
individuals whose personal health information was improperly
handled, or to effectively oversee the legislation.
I thank you for this
Thank you very much for your presentation. You've timed it
perfectly. We appreciate the very detailed recommendations you
make in your written brief as well.
CANCER CARE ONTARIO
Our next presentation will be from Cancer Care Ontario. Good
morning. Welcome to the committee. Again, we have 20 minutes for
Shumak: Mr Chair, members of the committee, thank you
for the opportunity to appear today before the committee. I'm
accompanied by my colleagues, Dr Verna Mai and Dr Eric Holowaty.
If there are questions afterwards if there is time, I may call
upon them to answer those questions, with your permission. I
believe everyone has a copy of my remarks, as well as additional
background information related to the presentation I'm going to
Just by way of background,
Cancer Care Ontario has the mandate of providing overall cancer
system planning and of operating the province's regional cancer
centres, the Ontario breast screening program, the Ontario
cervical screening program and the Ontario Cancer Registry.
Cancer Care Ontario carries out laboratory, clinical,
epidemiological and health services research, and we are
responsible for establishing provincial treatment guidelines and
practice guidelines for cancer. We are also the provincial
government's principal adviser on all cancer issues.
Our comprehensive mandate
means that there are a number of purposes for which Cancer Care
Ontario collects, uses, discloses and stores health information.
The protection of personal health information is therefore an
issue of significant importance to Cancer Care Ontario. We have a
vested interest in ensuring that cancer patients and the public
have confidence in the legislative protections that are intended
to protect their privacy. If they are confident that adequate
safeguards exist, we can then better meet our responsibilities to
provide the people of Ontario with timely, high-quality cancer
services as close to home as possible.
The Personal Health
Information Privacy Act affects a number of Cancer Care Ontario's
programs and services. For the purposes of this presentation,
however, I'm going to focus on one section of the legislation,
section 30 in part VI of the act. This section specifically
identifies Cancer Care Ontario as an organization to which health
information custodians can
disclose personal health information without informed consent. My
purpose in presenting today is to explain why this provision is
critical to Cancer Care Ontario's ability to provide the people
of Ontario with the best possible cancer control services.
We in Cancer Care Ontario
strongly support the principle of informed consent. As an
organization that treats cancer patients, I think Cancer Care
Ontario is in fact particularly sensitive to the importance of a
patient's right to control access to his or her health record.
Based on my own experience as a physician who treats cancer
patients, I can tell you that the stigma that unfortunately is
still associated with a cancer diagnosis causes some patients so
much anxiety that they do not even want members of their own
family to know about their illness. It is their right to make
that decision and, as health care providers, we must respect and
However, there are some very
important programs and activities that require access to personal
health information where it is not practical and/or possible to
obtain informed consent. Cancer Care Ontario has the mandate to
operate such programs. These programs are the Ontario Cancer
Registry, the Ontario breast screening program, and the Ontario
cervical screening program. The special status accorded to Cancer
Care Ontario under Bill 159 is related to the operations of these
The screening programs
require access to identifiable health information in order to
monitor the effectiveness and quality of the actual screening and
to ensure that women return for regular screening. Also, some
women who are screened through the Ontario breast cancer program
and ultimately have cancer have their cancer diagnosed through
other means. From the perspective of quality assurance, it is
important that the program know about these diagnoses made by
other organizations. In addition, many women receive mammography
screening from facilities that are not affiliated with the
Ontario breast screening program, and all women have Pap smears
from their primary care practitioner or in the hospital, and
therefore it is necessary for Cancer Care Ontario to collect this
information from other organizations.
I'm going to use the balance
of my time to discuss the Ontario Cancer Registry because I
suspect most people are not as familiar with the registry and
because the rationale for the exemption from informed consent is
actually the same across all three programs. As I mentioned
before, if there are questions about any of the screening
programs, Dr Verna Mai, who is director of screening for Cancer
Care Ontario, is here and will answer any questions you might
have about those programs.
The Ontario Cancer Registry
is a computerized database of information on all newly diagnosed
cases of cancer and on cancer deaths. The Ontario Cancer Registry
is the largest patient-specific cancer registry in Canada. Since
1964, over one million new cases of cancer have been
The registry in Ontario meets
national and international standards for completeness, timeliness
and quality of information. It is estimated that approximately
50,000 new cases of cancer will be diagnosed and registered in
Ontario in the year 2001.
The process of cancer
registration in Ontario is passive, relying almost completely on
records collected for other purposes. Close to 400,000 records
are submitted to the registry each year. Since 1979, the registry
has relied on the same four major data sources: first, hospital
discharge summaries and day surgery reports that include a
diagnosis of cancer; next, pathology reports that have any
mention of cancer; third, the records of patients who are
referred either to Cancer Care Ontario's regional cancer centres
or to the Princess Margaret Hospital; and finally, information is
obtained from death certificates on which cancer has been
recorded as the underlying cause of death.
All records except pathology
reports are coded at the source and provided to the registry
electronically. A limited number of Cancer Care Ontario staff
have access to the identifiable information contained in the
Ontario Cancer Registry. We have signed agreements with the
organizations that submit data to the registry governing the use
and disclosure of this data. These agreements place strict limits
on the disclosure of identifiable registry data to third parties.
There is a formal process through which third parties must make
requests for identifiable registry data. In most cases such
requests must be approved by the organization that supplied the
data to the registry.
All research proposals are
reviewed and approved by an ethics committee, and research that
is undertaken using registry data almost always includes at least
one investigator from Cancer Care Ontario itself.
The data from the Ontario
Cancer Registry predominantly are used to carry out
epidemiological or population health research. There are two
points I want to emphasize about this type of research. First, to
be meaningful, it requires access to the complete population.
Further, epidemiological research requires personal identifiers
to ensure completeness of the data and to track trends and
occurrences over time. A patient's health record, particularly
when we're talking about cancer, includes data related to
diagnosis, treatment and follow-up care, and those data come from
multiple health care organizations. A complete registered cancer
case requires all these data to be linked, and that's only
possible through the use of personal identifiers. Secondly, the
vast majority of epidemiological studies involve people only
through the use of surveys or the study of existing data,
documents, records and pathology reports. People who are the
subject of epidemiological research are, therefore, generally
considered to be at no more than minimal risk of harm.
Research based on data
generated by the Ontario Cancer Registry can make invaluable
contributions to Ontario's cancer control system. Specifically,
data are used to predict future cancer trends, including cancer
incidence, mortality and
survival; to determine future needs for cancer services and
cancer professionals; to monitor the effectiveness of cancer
prevention, early detection, treatment and supportive care
programs; to identify genetic, lifestyle, occupational,
environmental and other risk factors; and to evaluate the
effectiveness of cancer screening programs.
Let me cite some examples of
important knowledge that has been gained as a result of the
Ontario Cancer Registry: first, the existence of significant
variation in patterns of cancer treatment and in the associated
outcomes across the province. The ability to identify such
differences is the first step in fixing underlying problems.
Through record linkage studies, important links between
occupational exposures and cancer risk have been identified.
These findings have usually led to the development of safer
regulatory standards and the institution of more effective
preventive practices, such as dust control and personal
Because of the completeness
of the registry and the availability of sufficient identifying
information, the long-term follow-up of very important clinical
trials becomes possible: for example, the national breast
screening study started in the early 1980s. To this day we are
able to continue to track the occurrence of breast cancer and
deaths through periodic linkages with registry data, and that
produces clearer estimates of the benefits of breast
As I mentioned previously,
complete data on newly diagnosed cases of cancer and on cancer
deaths is critical for this type of research, and, in turn, the
obtaining of complete data is entirely dependent on having access
to identifiable health information.
The privacy commissioner
herself acknowledged as much in her presentation to this
committee earlier this month. To quote the privacy commissioner,
"There is only one subset of research that truly does require
personal identifiers, and that's the narrow class of
Requiring informed consent
for identifiable health information submitted to the Ontario
Cancer Registry jeopardizes the quality of data contained in the
registry for two reasons. First, obtaining informed consent would
be the responsibility of health care providers who, in addition
to obtaining consent to treat, would have to educate patients
about the Ontario Cancer Registry. This would be time-consuming,
and it is unlikely that physicians and other clinicians would be
willing to routinely obtain consent. Many cancer cases therefore
would be lost. Second, if even a small percentage of patients
chose to opt out, the registry data would be biased, and in our
opinion therefore would be of limited use.
The same two arguments can
also be made in support of the requirement for personal
identifiable health information by both the Ontario breast
screening program and the Ontario cervical screening program. Let
me quote an example. In Germany, where informed consent was
required in the 1980s and 1990s, cancer registries collapsed and
epidemiological research in that country was halted.
I want to give you a few
examples of the type of work that will no longer be possible if
we didn't have a reliable provincial cancer registry.
We wouldn't be able to
evaluate whether the treatment guidelines that helped to ensure
that there's a high standard of care throughout the province are
rapidly being adopted throughout Ontario, and we hope eventually
manifesting as higher Ontario-wide survival rates or better
quality of life in patients who have cancer.
We wouldn't be able to
determine the prevalence of hereditary cancers in our population
or to study the natural history of these cancer patients and
their high-risk families, including access to and utilization of
effective counselling and treatment services.
We wouldn't be able to study
whether living close to sources of environmental pollution
increases the risk of cancer.
We wouldn't be able to
evaluate whether public health policies on prevention are
We wouldn't be able to
estimate whether the costs of cancer care, particularly the
length of hospital stay during the initial and the terminal
phases of care, varies much by the location where the care is
provided. This information is very important in identifying
opportunities for conserving the limited cancer care resources we
have in this province.
We wouldn't be able to study
whether current or future prescription drugs or medical devices
inadvertently cause cancer. As an example, Cancer Care Ontario
recently completed an assessment of the possible association
between antidepressant medication and breast cancer risk.
Given the overall advantages
to cancer patients and to the entire population, because all
people do have a risk of developing cancer, and the minimal risks
that epidemiological research poses to individuals, we believe
the benefits that the Ontario Cancer Registry, the Ontario breast
screening program and the Ontario cervical screening program
provide justify the exemption from informed consent.
It is primarily for this
reason that Cancer Care Ontario is afforded special status under
section 30 of the Personal Health Information Privacy Act, and it
is for this reason that I ask members of the committee and those
who are involved in the drafting of the legislation to continue
to support the inclusion of such a provision in the final draft
of the bill.
Thank you for the
opportunity to make these comments.
Thank you very much. That leaves us about five minutes for
Can I ask my colleagues to join me should there be questions?
Feel free, please. About two minutes per caucus.
Mrs Lyn McLeod
(Thunder Bay-Atikokan): I appreciate the concerns you
have around the importance of accessing identifiable information.
Are you suggesting that what have been considered by some to be
restrictions on your access to that information for research
purposes are still too restrictive for what you need, or is the
act as currently drafted suitable, in your view?
I was speaking in support of the provision in the act that allows
us to have that privilege.
McLeod: When you talk about the agreements you currently
have in the absence of legislation, the agreements you have with
those who provide you with data and those agreements for the
disclosure to third parties, what kinds of third parties and what
limitations are there on the nature of the third party? Would
they be exclusively those who would be considered under this
legislation to be health care custodians, for example?
I'm going to ask my colleague Dr Holowaty, who has the direct
oversight of that, to respond to that question.
Holowaty: This would of course only be for research
purposes and only in those situations where disclosure is
absolutely necessary for the research purpose and where adequate
safeguards in terms of personnel practices, database security and
physical security are taken by the third party researcher.
There's a fairly extensive
assessment that's necessary when researchers apply for access. We
expect a thorough protocol. We expect external peer review to
assure us of the quality of the science that's being proposed. We
expect proper research ethics board review in approval. We have
additional reviews within our own agency.
You have within your
package, probably at the back, a list of much of the research
that could only be published as a result of the Ontario Cancer
Registry. As Dr Shumak had said earlier, almost always CCO staff
are co-investigators in this research. For the projects that
don't seem to have CCO staff listed-and you'll see
that-invariably they're behind the scenes, controlling access to
I'm sorry, Ms McLeod, we're well over. Ms Lankin.
Ms Frances Lankin
(Beaches-East York): Let me perhaps direct my question
to the screening programs first and ask for a bit of an
explanation as to why the personal identifier is important. I
think it's implicit in what you've said, but it would be good to
have it on the record.
Mai: Why don't I take the example of the cervical
screening program. One of the benefits of an organized screening
program, as opposed to just having Pap testing going on that's
unorganized or what we call opportunistic, is that we can
actually organize the system so that women do not slip through
the cracks. They get reminders through their family doctors when
they have missed a Pap test for over three years, which is the
way we're looking at this.
Some of the main reasons or
the main associations that have been found with cases of invasive
cervical cancer have been an inadequate Pap test history or an
inadequate follow-up of somebody with an abnormal Pap test. So I
think that kind of points out how having personal identifiers
would allow a cervical screening program to make sure that no
women slip through the cracks-
Could I ask you why we wouldn't take a perspective where, as a
woman patient, when I come in and I'm having a Pap smear and
speaking with my doctor, the doctor says, "There's a screening
program available. It's very advantageous. Why don't we enrol you
in that?" Why wouldn't we ask for that informed consent in that
Dr Mai: If
you look at the number of Pap tests carried out in the province
each year, and it's well over a million, two million, that would
actually be something that would be highly impractical to have
each and every time a woman going for a Pap test-
No. The first time, you enrol in the program.
OK. The first time, you enrol. What's written in the legislation
with the regulated programs actually would accomplish that in
that there would, if I understand it correctly, and I guess the
regulations would have to spell this out, be information that
would have to be given to women that in fact your information
would be part of the program, and it would be part unless they
chose not to. My concern is, in doing that, in opting out of the
program, the onus is there for the health professional to make
clear that the woman understands that if she's not in the
program, she's not going to get reminder notices; there won't be
a chance for the follow-up needed for an abnormal Pap test.
But that would be her choice.
Ms Lankin, I'm afraid we've got to move along.
Mr Bob Wood (London
West): I wonder if you could tell me why you can't get a
representative sample of the whole with the consent of the
In order to do what?
In doing research, you have to get a representative sample of the
whole. Why can you not get a representative sample of the whole
with the consent of the patients? Obviously, some won't consent.
Why can you not get a representative sample the same way
pollsters do all the time, for example?
I think, and Dr Holowaty may wish to comment afterwards, for
certain types of research that would be quite acceptable. Indeed,
for certain types of research, representative samples are exactly
what would be obtained. But there are other kinds of research in
which the entire population is necessary.
You don't have that now. Those treated only by a physician, you
don't have those now, do you?
It depends on what you're talking about. If we're talking about
the cancer registry data, yes, we collect in the registry
information on virtually 100% of patients in this province,
regardless of whether they're treated in Cancer Care Ontario
centres or elsewhere.
If they're treated only by a physician, you have access to that
Dr Shumak: Yes, because if they
have cancer, the data will be in some sort of pathological report
or hospital final discharge note-
No, suppose they never go to hospital.
There would still have been a pathology report. Otherwise, the
diagnosis of cancer wouldn't have been made. In order to make the
diagnosis of cancer, a tissue diagnosis is required. It's at that
point that we would get that information, from whichever
mechanism of making that diagnosis.
And why can't you get a representative sample by consent?
As I say, for certain types of research we could, but for other
types of research it's important that we have all patients.
Therefore we're back where we started from, which is that in
order to get consent from all patients, for the reasons that I've
tried to address, that's an extremely difficult problem, and that
would compromise the quality of the research we're doing.
Thank you for coming and making your presentation.
McLeod: I appreciate that we're working under tight
timelines and I don't want to hold the committee up, but I'm
wondering, if there are significant outstanding questions,
whether or not it's appropriate for us to put them on the record
for the research officer perhaps to pursue with the witness
outside the committee. I'm thinking just in terms of getting some
background information for the future amendment process.
I'm sure that would be reasonable, but I don't see why that
couldn't be done perhaps when we break at lunch or at the end of
McLeod: All right. I'm happy to do that.
I'm sure the clerk and the researchers could contact them. We
have contact numbers and addresses for all the groups appearing
McLeod: That's fine. So submitting those questions at
the break to the research officer would be the best way of
pursuing other issues?
That would be acceptable. Thank you.
ONTARIO COALITION OF PSYCHIATRISTS
Our next presentation will be from the Ontario Coalition of
Psychiatrists. Good morning and welcome to the committee.
Dr K. Sonu
Gaind: Thank you. We will take half a minute to set up
my presentation. Mr Chair, could I just confirm: will we have
till 10 past to make a presentation?
On my watch I have 9:48, so you'll have till 10:08.
I think I'll start the presentation, but maybe we could get this
arranged. There are copies of the slides being handed out as
well, so if it doesn't end up working for whatever reason, we'll
be able to proceed.
My name is Dr Gaind. I am a
psychiatrist working in Toronto, and accompanying me is Dr Doug
Weir. We're both presenting for the Ontario Coalition of
Psychiatrists. The Ontario Coalition of Psychiatrists is a
partnership of the Ontario Psychiatric Association and the
Ontario Medical Association. It represents approximately 1,500
We're presenting before you
today because we obviously have a number of concerns regarding
the confidentiality aspects of this bill. We feel that, as
drafted, Bill 159 would undermine the ability of Ontario citizens
to obtain effective psychiatric care.
We've distilled our
concerns down to two main points. The first issue is that
psychiatric care and psychotherapy are unique in the provision of
any medical services in the requirement for privacy to enable the
treatment to occur. The second point is that psychiatric records
themselves are unique and separate from other medical records,
and recognition should be given in the bill of this issue as
We feel the potential for
the non-consensual disclosure of personal information,
psychiatric records specifically, to the minister, to the
minister's delegate, to researchers or to heads of penal
institutions would prevent patients from receiving necessary
psychiatric care. If you're following along in the handouts, this
is on the second page. I'm now at "Uniqueness of Psychiatric
Clearly, patient privacy is
important in every aspect of medical care. I believe that's what
this committee is meeting on, to hear the different aspects of
this. But it is fundamental and necessary to psychiatric
treatment in a way that it simply is not for other medical care.
Unlike with other medical treatments, healing emotional suffering
cannot occur without communication of sensitive, emotional
issues. I think this is easy for any of us to imagine. If we put
ourselves in the shoes of a psychiatric patient who needs care
and we imagine that we are, for example, depressed in the context
of a marital breakup or some other issue that comes along in our
lives, this is easy to imagine.
We know that at least one
in five people in Ontario will experience clinical depression
during the course of their lifetime. Looking around this table,
that would mean approximately two of us, or more, at some point
would be suffering from clinical depression.
The issues we would be
struggling with are difficult enough to discuss at the best of
times. Who among us would feel comfortable discussing these with
our psychiatrist if we realized that our deepest fears, our most
private sexual fantasies, any of our other most intimate thoughts
could be revealed or shared with a third party outside the
therapeutic setting? Trust is required to divulge such intimate
fantasies, fears and thoughts and to discuss disturbing emotions
or embarrassing information.
This is distinct from any
other medical service. I may well have emotional concerns about
any medical illness. I may have a stigma associated with it. If I
was going to my doctor, concerned I might have HIV or AIDS, there
are many emotional issues around that. However, I will go to my doctor, I will have
various investigations performed, I will be diagnosed and I will
still be treated. The same simply does not hold true for
psychiatric treatment. As the Canadian Psychiatric Association
has stated, without confidentiality there can be no trust, and
without trust there can be no therapy.
It's important to point out
that the trust which is required for therapy to proceed is not
simply that disclosure does not take place but that disclosure
cannot take place. The potential for non-consensual disclosure is
enough to undermine any attempt at psychiatric treatment.
The other issue I'd like to
point out is that, as currently stated in Bill 159, the very
patients we most need to help will be the ones who are most
disadvantaged by the ability of the minister, the minister's
delegate or other third party individuals to obtain psychiatric
records. For example, patients who have been traumatized through
abuse-sexual abuse, psychological abuse, physical abuse-have
difficulty trusting individuals at the best of times. Patients
who have serious psychiatric illnesses such as schizophrenia or
manic depression may also experience symptoms of paranoia or
persecutory ideation. These people will not be able to feel
comfortable in any setting unless it assures them of
I'll just take one second
to catch up with the slides.
In summary, the current
provisions for potential non-consensual disclosure particularly
disadvantage, ironically, those most in need of psychiatric
The next issue I'd like to
raise regards the uniqueness of psychiatric records. Once again,
psychiatric records are very different from medical records, and
this needs to be reflected and accounted for in the legislation.
Psychiatric records reflect the process of therapy. The process
of therapy includes exploring the patient's fantasy world and
fears. It is not based in the real world. As a result, the actual
records themselves do not reflect the factual information and
historical data that are present in other medical records. The
psychiatric record is a reflection of the patient's subjective
and unconscious world, not of the real world. Such psychiatric
records can serve no purpose in managing the health care system.
They are simply memories of the patient's mind, if you wish, and
no third party has a right to look at that without very good
The other issue is that the
nature of the records is highly subjective, impressionistic and
very context-sensitive to the situation of therapy. Taking those
records outside of therapy and examining them is simply fraught
I've tried to summarize the
key points here. There is considerably more contained in the
brief we've handed out. What I would like to do is also provide
you with the views of many other associations and legal bodies,
nationally and internationally.
The Canadian Psychiatric
Association recently passed a position statement on
confidentiality of psychiatric records. This was passed in
December 2000 and will be printed in April 2000; it's currently
at the press. I'll just read the first part: "Confidentiality is
a prime condition in enabling the establishment of an effective
therapeutic relationship. In no other medical specialty is so
much private information required for establishing an accurate
diagnosis and treatment plan." I'll skip the rest of that quote,
but just remind you of the other point of that position
statement, which is that without confidentiality there can be no
trust, and without trust there can be no therapy.
The World Psychiatric
Association in 1977 adopted the declaration of Hawaii, which is,
"A therapeutic relationship between patient and psychiatrist is
founded on mutual agreement. It requires trust, confidentiality,
openness, co-operation and mutual responsibility."
The Supreme Court of Canada
in 1999, in the case of R. v. Mills, stated: "In cases where a
therapeutic relationship is threatened by disclosure of private
records"-threatened by disclosure of private records-"security of
person and not just privacy is implicated." We're now affecting
well-being, and the Supreme Court of Canada has recognized
The United States recently
passed, in December 2000, a bipartisan act called the Health
Insurance Portability and Accountability Act. It's quite a
lengthy act, but regarding psychiatric records it specifically
identifies the increased need for privacy of patients'
psychiatric information. There are more stringent rules in place
for psychotherapy notes, requiring patient authorization for
disclosure. When the medical director of the American Psychiatric
Association went to the White House to hear discussion on this
act, the President specifically acknowledged the need for strong
privacy protections for psychiatric patients.
Again in the US, the United
States Department of Health and Human Services, which was
instrumental in drafting the regulations that were in the act I
just showed you, wrote, "Psychotherapy notes do not include
information that covered entities typically need for treatment,
payment or other types of health care operations." In this
context, "covered entities" refers to the health plans
themselves. The closest analogy we would have here would be the
Ministry of Health. Basically, they're saying the payee has no
business looking at these notes because they're not relevant to
what the payee is doing.
Even prior to the passage
of the act which I've showed you, the US Supreme Court, in the
Jaffee-Redmond case in 1999, specifically acknowledged the
extraordinary degree of trust necessary for psychotherapy
treatment to proceed, and they ruled that communications between
psychotherapists and patients are protected by absolute privilege
in federal court. They also noted that in 50 states there are
specific issues which protect psychiatrist-patient privilege.
They've also accorded psychotherapist-patient relationships the
same status as the solicitor-client relationship with respect to
All those other bodies may
add some legitimacy to what we're saying here, but frankly I
think the words of real people who may be affected are probably
more telling, and we hear them in a different way.
This is from Janna Smith, an author in the States:
"The bottom line is clear. If we continually, gratuitously reveal
other people's privacies, we harm them and ourselves, we
undermine the richness of the personal life and we fuel a social
atmosphere of mutual exploitation. Let me put it another way:
Little in life is as precious as the freedom to say and do things
with people you love that you would not say or do if someone else
were present. And few experiences are as fundamental to liberty
and autonomy as maintaining control over when, how, to whom and
where you disclose personal material."
Ms Smith is talking about
people we love. It is routine for patients to come to their
psychiatrists and say, "I'm telling you something I've never told
anyone in my life, even my closest confidant." Imagine what we're
taking away from these patients.
In managing the health care
system we do recognize that certain information may well be
required. Once again, this information is based in fact, and the
factual information which is required can be obtained already
without non-consensual access to the intimate information of
psychiatric records. For example, diagnoses can be tracked,
services provided can be accounted for and treatment can be
tracked. Investigating fraud on the part of the physician or
anyone else can also be done currently. In any case, where there
are legal proceedings, records can always be subpoenaed. There is
no absolute confidentiality of psychiatric records. They can be
subpoenaed in legal proceedings. However, that is the test which
needs to be passed, even here. We do not need to loosen access to
intimate psychiatric records to achieve any of these goals.
Please remember that protection of patient privacy and of the
psychiatric record is not an issue for the psychiatrist. It's not
in our interests to be presenting this to you here. This is an
issue in the interests of the patients. There literally is no
self-interest in this instance.
If we look at the
harm-versus-good equation, if we look at the harm caused by
potential access by third parties, there is significant harm
which can and will be caused to all Ontario patients and no good
will actually be provided. Psychiatric records do not contribute
materially to the management of the health care system.
The Canadian Psychiatric
Association has recommended that "precautions be taken to ensure
release of any information without the express consent of the
patient is required by law and judged by an impartial
authority...." That is the same test we would ask this
Legislature to pass. Subsection 31(3), in which the minister is
directed to consider the public interest and privacy interest of
the individual prior to issuing a direction requiring disclosure,
simply does not afford the same protection to patients'
psychiatric records as the legal system does.
Regarding research, the
Canadian Psychiatric Association's position, which we share, is
that, "Certain anonymous or impersonal data may be used for"
various purposes, including "ethical research." There is no need
for patients with identifying data, especially psychiatric
records and psychiatric patients, to have their identities
revealed to any researcher.
What we are asking for in
Bill 159 is explicit recognition of the unique nature of
psychiatric records compared to other medical records. We are
also asking that release of psychiatric records requires the
individual's consent, even for the situations I've listed here:
subsections 30(4) and (5), sections 31 and 32, and clause 33(b).
Those are the sections allowing the minister or the minister's
delegate, the head of a penal institution and researchers access
to information without the patient's consent.
Thank you very much, and I
believe we have some time for questions.
We have about two and a half minutes for questions from one
I appreciate the thrust of what you're saying: that however this
bill ends up being drafted, there needs to be unique treatment of
psychiatric records, that they're apart and separate and need to
be treated differently.
Do you have any comment on the bill as it stands in terms of the
thrust or the balance that's contained? Much of what we are
hearing is the debate between the need for management of the
health care system and/or appropriate epidemiological research
versus the right of privacy, irrespective of the type of medical
records, the right of individual privacy and the premise that any
disclosure should be based on informed consent. I understand the
particular case you're making, setting out and apart from that
psychiatric records. Do you have an overall comment from your
perspective on the balance we're seeing in the bill as it's
written? Have we got the right balance, or do we need to rethink
I can't comment on that. The reason we didn't focus on it is that
I'm aware other organizations are likely presenting their views
on that, including medical and other associations. In the brief
I've quoted the Hippocratic oath. I'll start my answer by quoting
that. In it, every physician has sworn "that what I may see or
hear in the course of treatment or even outside of the treatment
in regard to the life of men"-admittedly they were sexist back
then-"which on no account one must spread abroad, I will keep to
myself, holding such things shameful to be spoken about."
Basically it's saying that
for any medical interaction we need to respect the privacy of the
patient and the information they're giving us, and to respect
their decision in order to share that information with others. So
I do feel that the ability of third party access is too broad.
Again, though, the difference for psychiatric treatment is that
the treatment simply can't take place unless privacy is
Thank you, gentlemen. We appreciate your taking the time to come
before the committee this morning and making a presentation.
COLLEGE OF MEDICAL RADIATION TECHNOLOGISTS OF
That takes us to our next group of presenters, the College of
Medical Radiation Technologists of Ontario. Good morning and
welcome to the committee.
Saberton: Good morning. My name is Sharon Saberton. I'm
the registrar with the College of Medical Radiation Technologists
of Ontario. With me today is our president, Sheila Robson, and
our legal counsel, Debbie Tarshis.
The College of Medical
Radiation Technologists of Ontario, or the CMRTO, as we refer to
it, is the regulatory body for medical radiation technologists in
Ontario. Our mandate is to serve and protect the public interest
through self-regulation of the profession of medical radiation
The CMRTO supports the
intention and spirit of Bill 159 in its effort to address the
lack of consistent rules covering what personal health
information can be collected and how that information can be used
and disclosed. The CMRTO believes the establishment of duties and
mechanisms to protect the confidentiality and security of
personal health information and the privacy of the individual to
which the information relates will strengthen the public's and
the profession's understanding of confidentiality of personal
The agenda we wish to
present today for our presentation includes our major conclusions
that health regulatory colleges should not be defined as health
information custodians, because they are governed by legislation
which is intended to be a complete code. To add an additional
layer of legislation would interfere with the CMRTO's ability to
regulate the profession in the public interest. Our oral
presentation will describe why we have come to this
In the written submission,
we are making some recommendations that specific amendments be
made to Bill 159 to maintain the integrity of the regulatory
processes established for the colleges under the health
professions procedural code, schedule 2 to the Regulated Health
Why health regulatory
colleges should not be defined as health information custodians:
The CMRTO has been established under the Regulated Health
Professions Act, RHPA, and the Medical Radiation Technology Act,
MRTA, to regulate the practice of medical radiation technology
and to govern medical radiation technologists, with the object of
serving and protecting the public interest. In accordance with
the provisions of RHPA and MRTA, the CMRTO has the responsibility
to investigate complaints, conduct investigations, gather
information about a member's professional conduct or capacity,
conduct discipline hearings and fitness-to-practise hearings to
determine whether a member has committed an act of professional
misconduct or is incompetent or incapacitated, and to implement a
quality assurance program.
Given that medical
radiation technologists are involved in patient care and
treatment, many of the activities of the CMRTO which relate to
investigating and assessing the practice of members of the CMRTO
will involve personal health information of patients. Under many
circumstances, the CMRTO collects and uses personal health
information with the patient's consent. Under certain
circumstances, the CMRTO collects and uses personal health
information without the patient's consent; however, it is
necessary to do so in order to protect the public from harm
caused by a member's incompetence, incapacity or professional
misconduct. In other words, the purpose for which the CMRTO has
access to personal health information of a patient is to assess
and evaluate the practice of its members.
In light of the
confidential nature of all the information received by the CMRTO,
including personal health information, the RHPA imposes a duty of
secrecy on every person employed, retained or appointed for
purposes of the administration of the RHPA and the MRTA, and
every member of its council and committees, subject only to
certain limited exceptions-section 36 of the RHPA. The health
professions procedural code, schedule 2 to the RHPA, provides
certain rules for collection and disclosure of information in the
context of the proceedings authorized under the code. For
example, if the CMRTO receives a complaint, the complaints
committee is obliged to conduct an investigation. The
investigation will frequently involve the collection, use and
disclosure of personal health information from the complainant,
the member and others.
The RHPA and the code
provide rules for the collection, use and disclosure of
information, including personal health information, to permit the
regulation of members of the CMRTO. The rules under RHPA have
been drafted to protect the public from practitioners who are
incompetent, act in a manner that constitutes professional
misconduct or are incapacitated. The CMRTO believes the rules
governing the college regarding the collection, use and
disclosure of information, including personal health information,
are appropriate in light of the CMRTO's regulatory role. The
CMRTO also believes the secrecy provision of the RHPA ensures
that patients' personal health information, as well as other
information collected and used by the colleges to further their
legislated objectives, is protected from disclosure.
The statutory framework
created by the RHPA, the health professions acts and the code is
intended to be a complete code to govern the regulation of health
professions by regulatory colleges. To add Bill 159, an
additional layer of legislation which is inconsistent, and in
some cases conflicts, with this statutory framework will
interfere with the CMRTO's ability to regulate the profession of
medical radiation technology in the public interest.
On page 5 of the written
submission, I provide two examples of inconsistency or conflict
between the RHPA and Bill 159.
There are provisions of the code which specifically
override confidentiality of health records in other legislation.
Subsection 76(4) of the code, which relates to the powers of an
investigator appointed under the code, provides that section 76,
the power of an investigator, applies despite any provision in
any act relating to the confidentiality of health records. The
purpose of this provision is to permit an investigator to obtain
information about a member's practice to determine whether a
member has committed an act of professional misconduct or is
How will an investigator be
able to carry out his or her legislated powers under the code and
comply with the rules for collection of personal health
information under Bill 159?
A similar problem arises
under section 82 of the code, which deals with an assessor
appointed by the quality assurance committee and his or her
powers to assess a member's practice. Subsection 82(5) provides
that section 82 applies despite any provision in any act relating
to the confidentiality of health records. The purpose of this
provision is to permit quality assurance assessors to have full
access to information in respect of the care of patients or of
the member's records of the care of patients, so that an
assessment of the member's knowledge, skill and judgment can be
How will an assessor be
able to both carry out his or her legislated powers under the
code and comply with the rules for the collection of personal
health information under Bill 159?
The CMRTO believes the
inconsistencies and conflicts between the RHPA, the health
profession acts and the code on the one hand and Bill 159 on the
other will interfere with the ability of the CMRTO and the other
colleges to fulfill their regulatory functions and public
On page 6 of the written
submission, we have some recommendations.
The first is that a
college, within the meaning of the Regulated Health Professions
Act, 1991, be excluded from the definition of "health information
The second is that section
11 of Bill l59 be amended by adding the following new
"(4) In the event of a
conflict between the Regulated Health Professions Act, a health
profession act and the health professions procedural code on the
one hand and this act on the other hand, the Regulated Health
Professions Act, the applicable health profession act and the
health professions procedural code prevail."
Third, to the extent that
it is desirable to extend certain principles set out in Bill 159
to the health regulatory colleges, this should be accomplished by
amendments to the Regulated Health Professions Act as part of the
five-year review of that act.
In summary, there are
several provisions of the bill which CMRTO recommends be amended
whether or not the regulatory colleges are included as health
information custodians. These are outlined on pages 7 to 12 of
Thank you for this
opportunity to make this submission to the standing
Thank you very much. That affords us time for questions,
approximately three minutes per caucus. We'll start with the
Mr Wood: I
have a couple. Do you have the powers to subpoena?
So why do you feel you need powers in addition to that? In other
words, why wouldn't you just use the power of subpoena where
you're doing an investigation?
Tarshis: Under Bill 159, although there is discretionary
disclosure, it would undermine the mandatory obligations with
respect to those specific powers.
Could you explain that a little more simply, please?
Tarshis: Sure, I'll try. Currently, there is a
discretionary power under section 36 of Bill 159 to disclose
personal health information to an investigator, for example, or
to others authorized under other legislation. It is discretionary
disclosure to health information custodians.
Under the RHPA, the
investigators have mandatory powers or powers with which one is
obliged or required to comply. There are other provisions under
Bill 159, such as the duty of confidentiality, that would
conflict with the powers of an investigator under the RHPA and
the health professions procedural code. Since under section 11 of
Bill 159, if there's a conflict between a provision of Bill 159
and a provision of any other act, the provisions of Bill 159
override, this would create a conflict between those particular
What I'm really coming to is this: if you're going to access my
personal health information without my consent, do you think it's
reasonable that a third party might have to approve that, other
than the college?
Tarshis: I'm sorry, I'm not understanding-
If the college is going to access my personal health information
without my consent, do you think it's reasonable that a third
party, other than the college, should decide whether or not you
have the right to do that?
Tarshis: Who is the third party that you're-
Whoever you get your subpoena from, who I presume is the
Tarshis: This isn't the only mechanism that is used with
respect to investigations and assessments.
I'd like you to focus in, though, on the situation where you want
my records and I'm not consenting; either you can't find me or I
have declined my consent. Do you think the college should be able
to do that on its own, or do you think it should have to go to a
third party to get permission to do that?
Tarshis: Because it has been set up in the public
interest with the regulation of health professions, which is in
the public interest, I think the response of the college would be
that there should be the authority to proceed on that basis on their own, without
necessarily each time obtaining a subpoena for that purpose.
You see no conflict between being an investigator and an
adjudicator at the same time?
Tarshis: The investigator isn't the adjudicator.
No-you are. You're deciding whether or not, without my consent,
you're going to access my health records. You're the investigator
and the adjudicator, surely.
Tarshis: Not really, because there is-
Who's adjudicating the question, then, if you aren't?
Tarshis: There are separate committees that then carry
out the adjudication, once an investigation is complete.
No, but the college is doing both, is it not?
Tarshis: In the overall sense of the term, yes, but
there are quite distinct committees that carry out the
investigatory functions, as opposed to the decision-making
functions, such as there is a discipline committee that has
public members and professional members appointed to it that has
absolutely nothing to do with the investigatory process. The
investigatory process is carried out either by investigators
appointed by the college or, more broadly, by a complaints
committee, for example, that is quite separate and distinct and
where information is not shared between the complaints committee
and a discipline committee.
Thank you, Mr Wood. Mrs McLeod.
McLeod: I appreciate your presentation, because I think
you've really raised what has to be a central question for us as
we look at this legislation, and that's the consistency or
otherwise of this legislation with the operation of all of the
My first question is, can I
assume that, as a college, the investigator's ability to access
health information would only be extended under conditions where
a complaint has been lodged and only specifically in relation to
Tarshis: That is one of the principle situations. In
addition, the college receives mandatory reports under certain
circumstances which would, or could, trigger an investigation. So
if there were mandatory reports filed in connection with sexual
abuse, that would be another situation. When employment is
terminated as a result of professional misconduct, incompetence
or incapacity, that would also lead to a requirement by the
employer to file a mandatory report. So it is also possible that
in addition to the complaints mechanism of a matter coming to the
attention of the college, it could come vis-à-vis a
McLeod: So those latter two situations would be
essentially situations where you would be accessing information
without consent of the individual involved.
I have a lot of concerns
about Bill 159 as it's drafted, and one of those areas of concern
is the limitations on the power of the commissioner to
investigate complaints, which I think ties in to one of your
concerns about inconsistency with the colleges' investigatory
powers. But I'm also a bit concerned about your recommendation
that the colleges simply be excluded from the legislation. If
health privacy legislation goes ahead and the colleges are
excluded, and they do represent the majority of the health
information custodians, don't we have a tremendously confusing
situation in terms of the practitioners, who would essentially
have two very different sets of rules to operate under?
I guess my question is,
wouldn't it be preferable, if we are to have health privacy
legislation in Ontario, to make sure that legislation is
consistent with the codes the colleges are operating under,
rather than exclude the colleges?
Tarshis: By excluding the regulatory colleges, one would
not be excluding the health care practitioners from the operation
of Bill 159.
McLeod: But we'd put them under two different sets of
rules, wouldn't we?
Tarshis: I don't believe so. I think their collection,
use and disclosure of health information would be governed by
Bill 159. The extent to which the regulatory colleges were
governed by Bill 159 would be excluded. However, health
regulatory colleges would not be totally out of the picture, to
the extent that there is a provision dealing with recipients of
personal health information, and even with excluding the
regulatory colleges as health information custodians, they would
still be governed by the recipient provision and therefore there
would still be those kinds of restrictions that were dealt with
in the recipient provision under Bill 159 which would continue to
govern the regulatory colleges.
In addition, the RHPA is
currently under a five-year review, and to the extent that some
of the principles aren't addressed through the secrecy provision
in section 36 of the RHPA, there would be an opportunity to make
those amendments in a consistent fashion to the RHPA.
McLeod: That's very helpful.
Thank you. Ms Lankin.
Can you explain to me how, as a recipient, you would be governed
by the recipient provisions, and what protection that would
provide to an individual's health information?
Tarshis: If you look at subsection 24(3) of Bill 159, it
provides that "a person to whom a health information custodian
discloses personal health information relating to an individual
... shall not use or disclose the information for any purpose
other than, (a) the purpose for which the custodian was
authorized to disclose the information under this act...." There
are a number of other exceptions, but "a purpose authorized under
some other law" is one other exception.
So, for example, the RHPA
colleges, by virtue of that provision, since they do receive most
of their health information from other health information
custodians such as hospitals and independent health facilities,
would be governed by that particular provision and obviously
could not use the information other than as permitted by their
Ms Lankin: In the situation where
someone files a complaint, obviously it would be easy enough to
get consent in that circumstance, so it really is the mandatory
reports that become problematic. Can you tell me, in a situation
where a health practitioner has been terminated and there is a
reason of misconduct, why you would need access to an
individual's identifiable health information record?
Tarshis: I'd like to backtrack for a minute. In terms of
complaints, I'm not sure that assumption of getting consent is
always the case, because in some situations it may be that the
complainant is desirous of not having the full picture before the
college. So there may not be consent to disclosure of certain
personal health information that would be relevant to the
complaints committee having the full picture of what actually
But to get to your second
Presumably, if I'm trying to say, "This person has done me
wrong," I want the facts out. Maybe you could be a bit more
explicit. We just had a presentation from the psychiatrists in
the province. Do you think access to psychiatric records and the
detailed records there is necessary in terms of full disclosure
of health information to you?
Tarshis: I would think it would be very unlikely for
this particular regulatory college, because of what it does, that
that would be an issue, in that medical radiation technologists
take X-rays and do nuclear medicine procedures. Now, in the
context of radiation therapy it may be relevant, but by and large
I would think that for this particular college one would not be
expecting to see psychiatric records as any relevant part of the
Thank you. We appreciate you coming before us here this
COLLEGE OF NURSES OF ONTARIO
Our next presentation will be from the College of Nurses of
Ontario. Good morning and welcome to the committee. We have 20
minutes for your presentation.
MacLeod: Good morning, Mr Chairman, honourable members.
I am Mary MacLeod, president of the College of Nurses of Ontario.
Anne Coghlan, who is the executive director, was to join me this
morning, but as she is stuck in Sudbury-her flight can't take off
because of the winds-Bill Campbell, who is manager of policy at
the College of Nurses, has agreed to join me in this
The College of Nurses is a
regulatory body for nurses in Ontario. We have approximately
140,000 nurses-RNs and RPNs-who are members. I would like to
thank you for the opportunity to make a submission to the
standing committee on general government on the proposed personal
health information legislation.
As you will see in the
document that's being circulated, we have some recommendations
which we have bolded throughout the document. I have those
recommendations here in front of me this morning, and I'll try to
give you some examples and some context around those
recommendations as they are put forward.
The College of Nurses
supports the general principles of Bill 159. The college applauds
the government's efforts to protect the personal health
information of the people of Ontario. In general, the proposed
legislation supports ethical nursing practice and respect for the
confidentiality of personal health information.
However, we have specific
recommendations for amendments to this bill that we believe will
strengthen the protection of privacy of personal health
information as well as balance the need for the protection of
privacy of personal health information with the public protection
mandate of health regulatory colleges. I will highlight some of
these recommendations made in our written submission.
The first is that colleges
should not be defined as health information custodians. A college
within the meaning of the Regulated Health Professions Act should
not be defined as a health information custodian under Bill 159.
If Ontario's health regulatory colleges were to be so defined, it
would seriously compromise our ability to fulfill our public
protection mandate through investigations, discipline, fitness to
practice, and quality assurance processes.
In order to carry out the
College of Nurses' and the colleges' public protection
objectives, the rules respecting personal health information
remain contained within the Regulated Health Professions Act and
the health professions procedural code. The College of Nurses is
bound by and carefully adheres to the confidentiality
requirements in the RHPA. Regulatory colleges do not provide
client care and they do not create personal health records. The
only reason the college collects, uses or discloses personal
health information is to use as evidence in quasi-judicial
proceedings. This evidence assists the College of Nurses to
perform its regulatory functions in order to protect the public
from incompetent and incapacitated practitioners.
The RHPA and the code are a
complete legislative framework which regulates the governance of
health professionals in Ontario. The RHPA enables the college to
effectively carry out its regulatory and public protection
mandate while at the same time ensuring the appropriate level of
protection of personal health records.
The College of Nurses has
worked with numerous pieces of legislation, including the Health
Disciplines Act, the RHPA and the Nursing Act. However, we find
this legislation to be as cumbersome and difficult to interpret
as this bill. From a practical perspective, it is imperative that
revisions to the bill reflect an in-depth understanding of what
health regulatory colleges do and how we do it.
Let me give you two
examples of how being governed by a combination of Bill 159 and
the RHPA would put colleges in an impossible position with
respect to the collection, use and disclosure of personal
health information and would make unworkable the task of carrying
out investigations and hearings responsibilities.
Here's the first example:
an employer has reason to believe that a nurse has abused a
client and reports the alleged abuse to the College of Nurses.
The college would then follow statutorily defined investigations
and possibly hearings procedures. Investigation procedures would
likely involve following up with the employer and requesting
copies of the client's personal health records if they are
relevant to the allegation of abuse. Bill 159 allows but does not
make it mandatory for a health information custodian to disclose
personal health information to a college. If Bill 159 took
precedence over the RHPA, which it appears to do, an employer is
not obligated to co-operate with an investigation by providing
relevant personal health information. In fact, Bill 159 may
frustrate any type of investigation with respect to abuse or any
other type of professional misconduct, incompetence or incapacity
if the health information custodian, in his or her discretion,
decided not to share personal health information with the College
of Nurses. This bill is so confusing that employers and others
who have concerns about incompetent or incapacitated nurses may
not co-operate with the College of Nurses' investigation unless
the college gets consent from each client involved, thereby
severely impacting our effectiveness.
Here's another example: the
College of Nurses has received a complaint that a member is
incompetent, including inaccurate and fraudulent record-keeping.
Bill 159 would make it difficult, if not impossible, for the
College of Nurses to disclose personal health information to an
expert in order to get an expert opinion. Bill 159 would prevent
the College of Nurses from using personal health information it
obtained, for example, from a whistle-blower who may have
obtained it in contravention of Bill 159, no matter how serious
the allegation of professional misconduct or incompetence.
Further, the definitions of
"proceedings" in this bill are confusing. It would appear that
Bill 159 intended to provide an exception to the general rules of
disclosure for proceedings. "Proceedings," as defined, however,
do not include meetings of or investigations by college
committees such as the complaints and executive committees. In
those investigations, they often need to disclose information to
third parties such as experts in order to obtain opinions as to
whether a member is incapacitated or an act of professional
misconduct or incompetence has taken place.
In addition, Bill 159
requires that before using or disclosing personal health
information, a health information custodian has to take
reasonable steps to ensure that the information in the record is
accurate, complete, and not misleading. If, as a health
information custodian, the College of Nurses were to take such
action, it would supersede the role of the college's statutory
decision-making bodies whose tasks include reviewing records in
their original format.
For all of these reasons,
the college recommends that a college within the meaning of the
RHPA not be defined as a health information custodian.
Other suggested amendments
to Bill 159 are as follows:
The RHPA should prevail.
The College of Nurses recommends that in cases where provisions
of Bill 159 and the RHPA respecting confidentiality conflict, the
RHPA prevail. Otherwise, the College of Nurses' ability to
protect the public against incompetent or incapacitated nurses
will be impaired, whether or not the College of Nurses is defined
as a health information custodian under this bill. The examples I
have highlighted give some indication as to the obstacles that
will be created.
Consent on behalf of a
child under age 16: Bill 159 intends to give a parent of a child
who is under 16 years the right to consent to the collection, use
or disclosure of the child's personal health information except
where the information relates to treatment to which the child
personally consented. CNO does not believe this is the
appropriate test. A child may not have been capable of giving
consent to treatment when the treatment took place; however,
years later that child may be capable of determining whether a
third party should be entitled to obtain, use or disclose his or
her personal health information. The appropriate test should be
whether the child is capable of determining who should have
access to his or her record or of consenting to the collection,
use or disclosure of his or her record.
relationship cannot be effective unless a client trusts the nurse
enough to be forthcoming about concerns, symptoms, habits and
lifestyles. This exception to the consent rule is so broad that
it would prevent open communication by the client and harm the
nurse-client relationship, which is based on trust and the
nurse's implicit promise to maintain client confidentiality.
In conclusion, we recommend
that a health regulatory college should not be defined as a
health information custodian under Bill 159; that in cases where
provisions of Bill 159 and the RHPA respecting confidentiality
conflict, the RHPA prevail; and that the test regarding who can
consent to the use, collection or disclosure of a child's
personal health information be amended.
This concludes my
presentation. I look forward to answering any of your
Thank you. We have about three minutes for questions from each
caucus. We'll begin with the Liberals.
McLeod: We heard earlier about the concerns of the
College of Medical Radiation Technologists in terms of the
investigative powers and how different they are under the
Regulated Health Professions Act from what Bill 159 sets out. I
wonder if you could say a little bit about the protection of
health information and the kinds of rules that colleges put in
place to ensure that confidential health information is not
disclosed by health practitioners, in your case obviously by
nurses. I know the
colleges do have rules in place. How different would your rules
be from what is set out in Bill 159?
Campbell: I'll try and answer a little bit of that. The
rules that we have for confidentiality and privacy are spelled
out in the RHPA legislation itself, and so the provisions with
respect to not sharing information with outside parties are
governed by that particular legislation. It is very similar to
what's being proposed in the new legislation, but there are some
wording amendments that I think need to be made that would make
it at least more consistent between the two.
McLeod: Given the existence of the colleges and their
role in taking any disciplinary action against members who are in
violation under the act, what's your sense of the need for health
privacy legislation in the province of Ontario?
MacLeod: That's probably hard to answer. The colleges
use information in order to be able to determine what occurred in
a situation, so if a complaint is made for whatever reason-a
complaint may come from a fellow nurse who is worried about the
practice of another practitioner, it may come from a family
member, it may come from a manager. There are various sources
where that complaint will occur, but there has to be an ability
to quickly get hold of that information about the patients who
were involved in the particular incident that's put forward in
order that there can quickly be some determination of that by our
college committees as restructured by the RHPA, and to act
quickly with respect to what's being alleged, either that there
is no action taken because of the investigation or that in fact
something needs to proceed on to the disciplines level.
Any kind of slowdown in
that process may allow, then, a practitioner to be out practising
every day who very well should not be out practising. But the
information that the college uses is only information that
directly relates to those particular incidents, so it's not like
you would actually ask for the entire health chart. You're
looking for pieces of information that are circulating around a
time period in which particular incidents were alleged to have
There are many jurisdictions where health professionals are
self-regulated, so this is not an abnormal situation, and there
must be other jurisdictions that have brought in health privacy
legislation where this conflict has become apparent. Are you
aware of how they have dealt with that? Does other jurisdictions'
health privacy legislation treat regulated colleges differently
than Bill 159 proposes to do?
Campbell: I'm actually not aware of other legislation. I
know in the western provinces there is some new umbrella
legislation that's very similar to the RHPA that has been
introduced, but I'm not familiar with the content of that
Perhaps we could put that request to legislative research to look
at the relationship between regulated health professions and
privacy legislation. It would be helpful.
You've alluded to the need
to move quickly to look at relevant portions of health records
where there has been a complaint, and that complaint can come
from a number of sources. You would have heard the previous
college's presentation and my question about why you would not be
able to go to the patient and ask for consent. Surely if the
patient felt that there had been something wrong and/or even if
it was on the advice of another health professional that the
complaint came forward, they would want to see that investigated.
Why would that not be a reasonable route for the college to
MacLeod: If a complaint comes from a public member, then
certainly I think they would then give consent for that
information because they are making a complaint about a
I think what sometimes
occurs with regulated colleges is there's a series of incidents
and events that lead up to some concern, usually by the employer
or the employees who work with that individual regulated
practitioner. So it may very well be a series of things that have
happened over a series of months. It may be sometimes things that
have happened over a series of years. There may have been
follow-up with the individual practitioner at the time but no
pattern of improvement has occurred. So to try and go back and
track each individual patient where there was some incident that
happened would cause an incredible amount of time to pass in
order to try, even if we could, to contact those particular
One might be medication
incidences regarding giving patients medications and maybe not
signing off incident records. Certainly, over time a nurse can be
re-educated and coached regarding the need to sign off
medications as they give them. But if there was, say, a pattern
of that and that was brought toward the college, then what we're
looking for is the medication records to show whether that nurse
has indeed followed the policies and procedures of their
particular institution, and when they haven't, what kind of
problem that causes.
If we had medications that
a nurse gave out on a ward that may be 30 or 40 patients and may
have stretched over six months, to find each of those clients to
get their approval to use that piece of the health record would
certainly allow that nurse to continue to practise probably
forever until we actually were able to pull that information.
Right now what we're able to do is go to the health institutions,
pull those particular pieces of the record, show that case, and
then move forward on some action regarding that.
Mr Joseph Spina
(Brampton Centre): Thank you for your presentation. I
wanted to refer to your final recommendation regarding the
intention and practical effects of the subsections listed there,
which states, "so that a child who is capable of making the
decision respecting the use, collection or disclosure has the
right to make that decision...."
I was trying to marry that
to your comment earlier in your presentation where you talked
about a child giving consent to treatment. There's no question
about the age of legal consent, but at some point a parent gives
consent for treatment,
and at another point, I'm gathering from your comment, the child
must also. I wondered what some of these other criteria would be
that would demonstrate capability on the part of the child not
just for the treatment itself, but also for the consent to
MacLeod: There are various examples of situations that
could come up. Right now my other position, although I'm not the
president of the college, is the director of emergency services,
and one of the things we do is we use the Consent to Treatment
Act to try and determine who can give consent for treatment.
A situation that might
occur is that a child comes into the emergency department who has
been injured and is unconscious. Because of that, the child is
unable to give consent even though they may be well able to do
that-if they're unconscious, they can't. What might happen then
is that a family member, a parent in particular, would give
consent for a particular treatment. Six months or a year later,
Bill 159 would allow the parents to give consent to that
information being given out rather than going back to the
particular child, who is now well and capable of deciding whether
they want that information disclosed.
Another example would be,
depending on how you frame the terminology "treatment record," if
a child had been injured because they were at a party and alcohol
was involved and they came into the emergency department and
needed some type of treatment, and because they were capable were
able to give that consent. If at the same time they told the ER
physician and nursing staff that there were alcohol and drugs
involved in the particular situation that caused that injury,
you'd want to make sure the patient's confidentiality that they
have with the providers is not open to the parents then coming
along and asking for that treatment record. If those incidents
that surrounded the actual treatment were disclosed to a parent,
then I'm sure that child would say, "Next time, I'm not going to
tell you all the stuff that surrounded my injury because you take
that information and you don't keep it private and confidential;
you in fact give it to my family members. So now I'm going to be
very careful when I come for treatment exactly what I tell you."
We're only able to treat people if we know all the facts.
I'm afraid we've run out of time, but thank you very much for the
presentation you made before us here this morning.
TORONTO ACADEMIC HEALTH SCIENCE COUNCIL
Our next presentation will be from the Toronto Academic Health
Science Council. Good morning and welcome to the committee. We
have 20 minutes for your presentation.
Williams: Good morning, Mr Chair, honourable members.
Gail Czukar, general counsel from the Centre for Addiction and
Mental Health; David Streiner, assistant vice-president,
research, from Baycrest; and I welcome this opportunity to
present before you. We come as representatives from the Toronto
Academic Health Science Council. The council is made up of the
presidents and CEOs of the eight academic and research hospitals
affiliated with the University of Toronto, as well as the vice
provost, relations with health care institutions, of the
University of Toronto, who is also dean. The members of the
council are listed in the submission before you.
The vice-presidents of
research and the university vice provost meet as a subcommittee
of TAHSC to consider research issues of common interest.
Scientists on the university campus and at the eight teaching
hospitals represent the full range of research supported by the
Canadian Institutes of Health Research, from basic medical
science and genome research to population health and health
systems research. Each year they successfully compete for
hundreds of research grants worth millions of dollars. Indeed,
23% of the national research funding provided by CIHR in the last
competition went to investigators based at the Toronto academic
health science complex.
As defined by Bill 159,
virtually all research undertaken in the teaching hospitals
requires personal health information and is therefore covered by
legislation. We are here today to speak about issues of Bill 159
as they relate to the research programs at our hospitals. There
are four specific points we would like to address:
(1) We support Bill 159
insofar as it provides protection for the privacy of individuals
and the confidentiality of personal health information, and
establishes a framework for the governance and uses of personal
health information in research.
(2) Research ethics review
bodies may allow hospitals to disclose personal health
information to researchers. We support the power of research
ethics review bodies, the conditions for approval and requiring
consent, and the agreement between the researcher and custodian
specifying the conditions or restrictions on the use of personal
health information. Of necessity, the research ethics boards will
have to tighten procedures for the approval of projects and the
uses of databases in research.
(3) We are opposed to
disclosure directed by a minister, as stated in section 31. This
section implies a direct threat to independent scientific inquiry
and the academic freedom of health scientists. We ask that this
section be modified to explicitly exclude health research
approved by research ethics review bodies.
(4) The legislation
stipulates that research ethics review bodies be designated by
regulation. Given the importance of their work for health-related
research and the number of research studies that must be reviewed
each year, we trust that the procedures will be in place for
timely designation by regulation. We look forward to discussions
with the Ministry of Health and Long-Term Care about the criteria
for designation and the terms of reference for research ethics
review bodies as the regulations are being considered.
Bill 159 issues a wake-up
call for research ethics boards of teaching hospitals. The
University of Toronto and the members of TAHSC acknowledge
inconsistencies in policies and procedures of research ethics
boards. TAHSC will harmonize research policies of the university
and its partners, including the policies and procedures governing
the ethical conduct of research. In particular, a common schedule
of policies and procedures has passed through governance at most
of the hospitals, and every university-affiliated institution
will have subscribed to this policy by the end of March. Further,
TAHSC is striking a number of university hospital working
committees to achieve further enhancements and harmonization of
The university and
hospitals have agreed to implement policies and procedures that
are consistent with the Tri-Council Policy Statement: Ethical
Conduct for Research Involving Humans. The Canadian Institutes of
Health Research is tracking the changes in federal and provincial
legislation related to the privacy of individuals and the
confidentiality of health information. The Tri-Council Policy
Statement will be reviewed and modified to meet the requirements
of the new legislation. The university and hospital will update
their policies and procedures accordingly.
Thank you for your
attention. Please call upon us if we can assist you in any way
with the bill as it progresses through the legislative
Thank you very much. You've left us lots of time for questioning.
This time we'll start with the NDP. We'll have about four minutes
for each caucus.
You said in your presentation, "Of necessity the research ethics
boards will have to tighten procedures," and you've spoken about
the kind of review that's going on within the family of U of T
and some of the inconsistencies that have already been found.
Could you elaborate on that for us? Why would the ethical bodies
now not have procedures that you would think would be tight
enough? How has this culture evolved?
Williams: There are two principal areas where tightening
is required, and my colleagues may wish to add more. The first is
having clear and explicit understandings, agreements with the
researchers as to the collection of the data and how it will be
used. It is a problem right now with the availability of laptops
and with health sciences students and graduate students working
in teaching hospitals in collaboration with investigators. I
wouldn't want to say that the research was unethical, but
sometimes research does take place without the research ethics
boards necessarily knowing of it. So tightening up the
relationship between researchers, the trainees and the research
ethics board I think is required.
Secondly, again because of
the availability of technology, we are developing databases to
help us understand better how services are being provided, the
efficacy of treatment and the cost and effectiveness in the
longer run. The databases can be used for research, but again I
think this is another area where research ethics boards may not
be entirely on top of the situation in terms of usage of health
information for research.
The third area which I will
add is the whole area of waiving informed consent for studies or
the allowance of proxies for informed consent. They are highly
contentious issues that research ethics boards continually
struggle with. I think this is one area where harmonization is
going to help us greatly.
Harmonization is one thing, but the actual minimum standard
that's going to be set with respect to that third issue in
particular is important in the context of what this bill purports
to achieve in protection of privacy.
The federal Privacy
Commissioner has told this committee to scrap the bill. He has
said that essentially there is no room for disclosure of
information without informed consent, for research or any other
purpose. Could you give us some practical examples of the kind of
research that requires identifiable information and no informed
consent participation on the part of the patient?
Williams: Yes. I might start by saying that I was
flabbergasted by Radwanski's presentation to this committee. It
is almost as if the legislation framed by Manley and the Minister
of Health, Allan Rock, live in two different worlds. Allan Rock
is very much concerned about the development of population health
information systems, building information systems that can be
used for accountability, information systems that can be used to
ensure access of services, efficiency and effectiveness of care.
Indeed, the special funding released through health transition
funds by Allan Rock has allowed Statistics Canada and CHR to
produce the health reports that we see published in Macleans.
Quite frankly, to do the population-based research that Allan
Rock is advocating and that is being picked up by Statistics
Canada, Health Canada, CIHR and researchers in this province
would not be possible if informed consent were required.
Can you give us some practical-
Ms Lankin, we've gone well over the four minutes. Mr Wood.
All I want to ask him is, why do you need the names?
Perhaps I could pursue that issue. You would agree with me that
in order to do valid research what you need is a representative
sample of the whole. You don't have to survey the whole. You have
to survey a representative sample of the whole. You would agree
with that, would you not?
Williams: I think that is true for a number of studies,
I won't dispute that point, but if we're talking about
population-based research as a type of research that is essential
for understanding how our health care system works, a
representative sample does not work.
Why is that the case? This is done all the time by pollsters. Why
is that not the case? Why do you say that? Why does a
representative sample not give us a proper picture of the
Dr Williams: The biggest
problem is that if you want to chase specific events-let us say,
for example, outcomes of cardiovascular care-the question would
be, how would you start with a representative sample? As events
get rarer, your sample size requirements grow. If you start with
a random sample of the population you'd have to have a huge
random sample. If you start from the persons with the events,
you're getting a biased sample to begin with. If you want to
study across a number of specific health problems and their
conventions, you end up getting repeated random samples. At some
point it becomes more efficient and effective to study the
population as a whole.
What I'm not grasping here is, why would you not ask for consent
of a representative sample first?
Williams: I think the ideal would be for people to know
when they are seeking health care how the health information
might be used. The study and the uses of health services would be
among those things included.
But suppose they don't give their consent for that? Suppose they
want treatment and don't want that done? Would you deny them the
Williams: Then I guess we get down to the classic
problem of the rights of the individual versus the public
That's a good frame of the question. Perhaps I can go on to one
more point, because I'm about to run out of time here.
The other point I want to
ask about is this: when you have these ethics bodies doing
reviews, do you have a problem with someone like the Information
and Privacy Commissioner signing off on those decisions before
Williams: This is a very important question. In the
discussion paper the minister released in September of this past
year, there was a specification of an overview body within the
ministry that would review the activities of research ethics
boards. We found that a bit disconcerting because there was very
little by way of terms of reference for this body or any
discussion as to how standards criteria, policies and procedures
would evolve. That has been removed. Some of the functions of
overview have been installed with the privacy commissioner of
Ontario, which is fine, but we're still left with, in the final
analysis, how are research ethics boards going to govern their
business with respect to policies and procedures? That's not
clear. It's not clear whether it will be covered under the
regulations as they are developed.
Would you have-
Sorry, Mr Wood. We've gone over.
Pupatello (Windsor West): Using the example that Cancer
Care Ontario spoke of earlier today in terms of identifying the
names of people involved in research, you could, for example,
need to know who the people are, to know where they work, so that
you could see that the disease was environmentally based or
workplace-based etc. I think I understand why in some research
you need to identify who the people actually are. So in terms of
whether you use a representative sample or not, sometimes you
need to know who they are, and the incidence of some disease
you're researching is such that it's so minimal that you need to
know a lot of specifics that would identify individuals. Tell me
why it is that you're not doing this now-my understanding is that
you have a whole opportunity now to do the research that you
want-and why this bill would suddenly change that.
Williams: I don't have a satisfactory answer for your
question. Certainly, there are practices and procedures that have
evolved in the research community over time. The good thing about
Bill C-6 and Bill 159 is that it does call for us to review what
we're doing and to think through our policies and procedures. I
suppose the reasons for why things might happen would vary from
hospital to hospital and research ethics board to research ethics
board. I can't answer your question. All I can say is we have to
Pupatello: I guess my question is, to put it a different
way, are you limited somehow now or is Bill 159 going to limit
you in the future, considering your current work? Are you somehow
limited and Bill 159 takes those restrictions off, or given 159,
you will have restrictions that you can't operate under?
Czukar: Let me take a stab at answering that one. Some
of the kinds of things that could not be done under Bill 159, one
of the things that concerns people in the mental health and
addictions community in particular, is that now a lot of research
is done with consent. Say it's a situation where you're not
looking at past records but you're collecting information from
people on a going-forward basis. They sign consents which say,
"You can use this information for the purpose of this research.
This is how I understand it's going to be and it's not going to
be used for anything else." Under Bill 159, that kind of
assurance would not be possible in that form because we have
directed disclosures to the ministry, which Dr Williams has
addressed directly in his brief. There are other discretionary
disclosures that, although they are not mandatory-as we'll be
saying more in our presentation later in the week-we believe will
exert pressure on the keepers of that information to disclose as
time goes on. That's one of the problems we have.
Pupatello: A very quick one: what would be left for you
if this bill does not get passed? For you to operate under C-6, I
guess if you could shortly answer, how is that going to affect
you? Will that stymie you in your operations and in what way?
My understanding is that under Bill C-6 we would require consent
for research. I don't understand how researchers could link
databases. Dr Williams will also be appearing this afternoon with
another group and they may speak to this more directly, but in
order to link historical data-that kind of data has been
collected and those records are held by health providers who have
used very different identification systems. Some have used health
numbers, some have used names, some have used their own unique
identification system. It would not be possible, most significantly, to compare
different kinds of treatment in the health system. If you wanted
to compare, for example, drug treatment with community mental
health alternatives, you would not be able to do that in most
cases because community mental health programs keep their
information very differently from the way hospitals do.
So if you're going to do
that on a historical basis, you have to have identifiers up
front. My understanding is that the institutes that do this kind
of research link it and then destroy the linkages and the
identifiers so that you have anonymized information or databases
that can be very useful. But you can't compare different kinds of
treatment in the system without having access to that
Thank you very much. We appreciate you coming before the
committee here this morning.
INSTITUTE FOR WORK AND HEALTH
Our next presentation will be from the Institute for Work and
Health. Good morning and welcome to the committee. Again, we have
20 minutes for your presentation.
Bartram: We have some handouts for the committee, both
slides and a copy of our presentation. Good morning, Mr Chairman
and members. My name is Jane Bartram. I'm the interim president
at the Institute for Work and Health. With me I have Sheilah
Hogg-Johnson, who is a senior scientist with us, and Jennifer
Payne, who is a scientist. They may be able to help you on some
of the more technical aspects of your questions.
We want to thank you for
the opportunity to speak to you today about Bill 159. Our
comments on Bill 159 are restricted predominantly to the research
area. What we'd like to do this morning is provide you with a bit
of an overview about our point of view about the legislation,
provide you with support for the legislation, talk to you a
little bit about who we are so you understand the nature of the
research we do, some of the principles that guide that research,
our own practices-and we'll be able to take you through a case
study that may respond to some of the questions I heard
earlier-and then bring you to the conclusion.
We want to confirm, first
of all, about the importance of the right of privacy of
individual health information and the balance that you've talked
about here at this committee already between that individual
right and the public good that can come from research. I want to
share with you the commitment of our researchers to finding that
The Institute for Work and
Health is a research-based organization that looks at new ways to
prevent workplace disability, improve treatment and look at
optimal recovery and safe return to work. We're an independently
incorporated, not-for-profit, non-statutory organization
established in 1990, originally as part of the WCB's medical
rehab strategy. We continue to hold the major contract with that
organization, where we receive about 80% of our funding for
research, with 20% of it coming from other funding sources.
We have a multipartite
board of directors with management, labour, health care, the WSIB
and academic leaders. We have an international research advisory
committee chaired by Dr Len Syme from the school of public health
at the University of California at Berkeley. We look to using
research which involves individuals with consent, but we also
have access to administrative databases, which I'll talk to you
about in a little bit more detail later.
We think this legislation
is needed and we welcome the legislation. I think it recognizes
some of the important contributions that research makes to the
health of individuals and to our society. Researchers share the
public's concern about privacy for personal health information,
and even though I know there are also concerns, the research
community actually has been able to articulate a number of very
important principles for protecting individual privacy and has
often been an advocate for this. We need to strike that balance
between individual privacy and public good.
In the previous
presentation you heard about the Tri-Council Policy Statement:
Ethical Conduct for Research Involving Humans. This is a standard
document for many mature research organizations in the country.
The document was put together by the Medical Research Council,
the National Sciences and Epidemiological Research Council and
Social Sciences and Humanities Research Council in 1998, and is
the basis of many research ethics boards in our universities
across the country.
The diagram that you'll see
underneath the picture of the front of the ethical conduct for
research involving humans pulls together the kinds of principles
that they feel are important for research. Beginning at the top
of that diagram, you see "autonomy," autonomy for the individual
being most important in terms of the research ethic. In
consideration with that are "privacy" and "confidentiality," in
other words, how you access, control and disseminate personal
information in relation to research, informed consent certainly
being the gold standard for protection; and also consideration
and protection of vulnerable individuals; then the balance
between the value of the research and the justice that it can
achieve. Looking at justice, they look at both the fairness and
equity of the research, procedural justice as well as
distributive justice, the benefits of that research.
On the value of the
research side, we take a look at beneficence, which is the duty
to benefit others and to maximize that duty and that benefit, and
also non-maleficence, which is the duty to avoid, prevent or
minimize harm. Researchers take these ethics to work when they
decide how to do their research, how to engage individuals, and
the research ethics board looks at those principles when the
research proposals come forward.
We wanted to share with you some of the
standards that are in place at our practices at the Institute for
Work and Health to try to find that balance. First of all,
there's an oath of confidentiality that all the researchers and
staff must sign. We've included a copy of that for your
information. We take our research to the research ethics board.
The tri-council policies are the basis for defining the research.
We need to always make sure that we have identified how we'll be
collecting that information. The ethics boards then help us make
the decision about whether individual consent is necessary or
We have access to
administrative databases from the WSIB, and I will take you
through a case study, for example, where we needed to link it to
OHIP data and the kinds of safeguards that we put in place to do
that. Identifying information is always stored separately from
study information data. It's off-line, it's under lock and key,
with very few individuals who have access to it. All our
computing facilities are password-protected. We have a second
computing environment which is secure and which is not linked to
We have research agreements
that we put in place through a review by the research ethics
board. These will help us if we need to access other databases.
For example, we take our research agreements if we need to have
access to some limited OHIP data, and we sign an agreement which,
in the future, would be a research organization or an information
We proceed with consent if
the consent is the way in which we want to go or is the way in
which we're connecting with individuals for the research. If
we're looking at administrative or secondary sources where
there's no intervention, there are no risks of physical or
psychological harm, confidentiality can be maintained by making
the data anonymized and the research will benefit society, then
we are less likely to proceed with consent. So we're looking for
I'd like to take you now
through a case study. I think it's important to understand that
the research mandate often, in a publicly funded health care
system, is to make sure that the system is working with equity,
efficiency and effectiveness in the delivery of care. We had a
research study which looked at injured workers with
musculoskeletal injuries. We had comparisons of costs. We wanted
to look at the comparisons of cost and effectiveness of treatment
provided by different clinical professions. We needed to inform
policies in the future surrounding clinical practice and funding
of health care services.
We had linked interview
information. We had five interviews from 1,500 workers. We had
access to Workplace Safety and Insurance Board rehab service
data, and we wanted to take a look at having a better
understanding of the overall health care utilization by this
group. The research protocol was written. It went to the research
ethics board at the University of Toronto, where the principal
investigator has an appointment. It was approved as not requiring
individual consent, but we also, in order to do the data
matching, had to make sure that the data was anonymized and was
We made the request to the
Ministry of Health, accompanied by the research ethics board's
approval. We had a signed research agreement with the Ministry of
Health to have access to the data, and the data were made
The diagram I've provided
for you on the case study shows the number of steps that we went
through to link the data, to keep it anonymized. The data was
kept separately on a disk, again, never available through the
Internet or electronically. It was kept in a secure place and
only very few staff had access to it. At the end of the study,
all this data will be destroyed.
We acknowledge the issue
raised by the federal Privacy Commissioner that even so-called
annonymized data may be identifiable-characteristics of certain
people if they're rare enough. As a research organization, our
practice is never to display sparse data on small data sets but
rather to always group them or aggregate them in the result to
decrease the likelihood of identification.
Having provided you with an
overview of some of the principles and an example of a case study
where we had to do the linking and protect the data, we want to
conclude with some strong endorsements of this legislation. We
think it clearly puts in place some best practices that all
research organizations should be using. There continues to always
be the need for balance between the individual right to privacy
and the anticipated benefits to society. It's a difficult line to
walk sometimes and I think the research ethics boards are a
critical component to make sure that line is walked carefully,
that the mechanisms for governance of the data are in place
within the organizations and that best practices will continue to
evolve over time.
With that, I think I will
close our verbal presentation and open it for questions.
That leaves us about bang-on three minutes per caucus and this
time we'll start with the government.
Please help me understand this better if I haven't got the
understanding. I gather that most of the research you're engaged
in has to do with physical elements of the research of workplace
health and safety, is that correct?
Bartram: Yes. Our research is in three areas. We have
the clinical area-and I just described case studies in the
clinical area-we have research that looks at the workplace itself
and how to prevent injury, and then we have a third area of
research that's looking at population health research. So it's
looking at the full working population and what kinds of issues
emerge in relationship to the nature of injury over time and
compensation systems, for example.
It's my understanding that WSIB, in more recent years, is also
looking at compensation for psychological or stress-related
injuries. In view of the presentations that were made earlier by
the Ontario Coalition of Psychiatrists, for example, with regard
to psychological counselling and those kinds of care issues, do
you have an opinion or a position with respect to that and the
amount of disclosure that could come out of that?
Bartram: I'm sorry, I did not hear the earlier
discussion, so it's difficult. I can't make comments on that. I
also should not make comments on WSIB policy. My understanding is
that WSIB is fairly silent right now as it relates to stress and
compensation. They look at it more on a case-by-case basis.
Do we have any time left?
Probably not enough to get a good question and answer.
McLeod: If Ontario does not pass its own health privacy
legislation, are you in any way affected by the federal
legislation, in your understanding?
Bartram: We haven't looked at the federal legislation in
quite the same detail as we have this bill. My understanding is
that the federal legislation affects the commercial side, and
being a not-for-profit, non-statutory organization-
McLeod: You are probably exempt from that.
Bartram: -I'm not sure how it will apply to us. We
haven't had our lawyer look at it.
McLeod: If we pass legislation in Ontario and it
contains some modified form of lockbox, for example, where
somebody could request that certain parts of their health
information not be disclosed, does that significantly interfere
with the kind of research you need to be able to do?
Bartram: I'm going to turn it over to our senior
scientist, who is a methodologist.
Hogg-Johnson: It may, depending upon how widely it's
used. One of the things we're concerned about in science is the
introduction of systematic bias. If we're studying a certain
condition and all of the important cases we wish to study have
placed a lockbox on that information, we won't find it, so we
won't be able to study it. But that's the only scenario under
Payne: The conclusions you would draw as a result of
that are biased, because you don't realize that you've missed the
most severe group, for example. They're no longer representative
of the entire entity you wish to study.
Pupatello: You mentioned that you would like to be
considered a custodian. I think your outstanding question
summarizes what would happen with the bill if you aren't, in
terms of being able to access data that may not be billings
through OHIP, for example, and some of the studies that seem to
be relevant in workplace studies. Because the Minister of Health
is considered a custodian and, in the example of the case study
you used, you accessed permission from the minister anyway to do
the research, why is that necessary? You managed to do what you
needed to do in the absence of Bill 159 by receiving consent from
That's a case of best practices as put forward by our group. That
project was sent to a medical research council for consideration
for funding. We're required to go through an REB review as part
of that application, again, in keeping with the tri-council
guidelines. As part of that, we have to apply for access to the
data via the ministry. We wanted to use that as a case study to
show how we would like to see the legislation put in place, to
ensure that all researchers are doing things in that manner.
That's what we consider best practices for research.
Part of the research
agreement and the ethics review board involve a consideration of
consent and how the data will be treated. The flow chart tries to
show you how certain identifying information is kept separate
from the rest of the data. For example, even though we got access
to OHIP data, I never wanted to see the OHIP numbers. It wasn't
appropriate. It's not required for my work. We had other people
do the linkage for us to ensure that we never saw confidential
data. In the end, we have an anonymous file, which we treat with
the same confidentiality and privacy issues that we treat any
data file. The point was to illustrate how the legislation looks
exactly like what we do, but what we do isn't necessarily what's
done regularly throughout the research community. That's why we
endorse the legislation.
On that point, what is it in the legislation you would say
ensures us of a higher quality of privacy protection in the
research community? It simply says that it must be subjected to
ethics board review. That's a question of policy. It's a question
of how policy gets implemented. I didn't get a chance to ask that
earlier of the research councils when they were here but I know
that, from hospital to hospital, existing policies that look very
good on the books are implemented very differently. I don't see a
legislative requirement here. Is that appropriate or do you think
there's some protection in the act that I'm missing?
I guess the naming of the REBs is left to the legislation, so how
they're named and the standards they must follow I guess are left
to the legislation.
To the regulations, you mean?
Sorry, the regulations. As a matter of practice, the researchers
in our group have to go through the research ethics boards at the
universities where their investigators are affiliated. We don't
deal with hospital ethics review boards; we deal with the
universities. We're comfortable with the level of review. But I
agree that the standards could be very different.
Let me ask you a question about your case study. I may be getting
closer to that elusive answer I'm looking for. I don't understand
why you needed identifier information in this circumstance. You
started off in that case study with individual interviews. Why
couldn't you have asked for consent, then, to go on to look at
the rehabilitation files and then to go on and look at the OHIP
Hogg-Johnson: This was a secondary analysis of data that
was collected for another purpose. The data were there. They were
also good to answer this second question. We could have tried to
go back and get consent. I think there were good chances that we
wouldn't find everybody. If we didn't find everybody, then we
don't have a representative sample of the original group.
Tell me what the secondary purpose was and why it was so
important that it would override the principle of informed
The second purpose was to bring in the OHIP billing side of
things. The workers' compensation insurance system uses OHIP as a
third party payer. When the initial study was first designed, it
wasn't envisioned that we would go to the physicians' services
data, which is contained within the OHIP billing database. The
ethics body was very concerned about the lack of informed consent
to link with OHIP. They ruled that we didn't require informed
consent because somebody who is being treated under a workers'
compensation scenario is getting their care from the same
provider, regardless of whether that provider bills to workers'
compensation or OHIP. So it wasn't necessarily seen as harm to
the individual because the administrative division between
workers' compensation and OHIP isn't seen by the individual.
But you didn't get consent in the first place.
There was consent to take part in the study, certainly.
So it was only the last step of then going to OHIP to look at the
And that's why we had to go to ethics.
Hogg-Johnson: It cost hundreds of thousands of dollars
to collect the information. To go back to square one for the
second question would again entail hundreds of thousands of
dollars. If you can answer the question-
I could say, facetiously, "Bad design; not my problem," as an
individual patient who deserves to have my information-I'm
actually supportive of the need for research but I'm trying to
understand it in real, practical ways so that we get all the
protections in the legislation that are necessary. I don't feel
like I'm getting hard enough information from researchers about
the need for this.
That exhausts our time. Thank you very much for taking the time
to come before us this morning.
REGIONAL MUNICIPALITY OF YORK
Our next presentation is from the regional municipality of York.
Good morning and welcome to the committee.
Jaczek: Good morning. I'm Dr Helena Jaczek. I'm
commissioner of health services and medical officer of health for
the regional municipality of York. With me are Manuela Di Re, who
is from the corporate and legal services department of the
region, and Diane Bladek-Willett, who is our director of policy
and planning in the health department.
We have a high-tech
PowerPoint presentation, which is probably entirely redundant.
Hopefully you have in front of you our presentation in paper
We're here in front of you
because the regional municipality of York is a major health care
provider to the residents of York region. Courtesy of local
services realignment, we operate land ambulance directly and have
done so since January 1, 2000-and enthusiastically, I might say.
We also operate two nursing homes through the Homes for the Aged
and Rest Homes Act. As medical officer of health, I am required
to ensure the provision of mandatory health programs and services
guidelines pursuant to the Health Protection and Promotion Act.
We have many other community health programs, not only within the
health department but also the community services and housing
Therefore, we are concerned
about some very practical issues related to Bill 159. As I have
described, being the provider of so many different services, one
of those is the issue of multiple custodians. We will get to that
Generally we are in support
of Bill 159. In particular, when we received the overview from
the government, we felt that the protection of privacy provisions
was going to be there. However, as my legal colleagues always
warn me, the devil is in the details, and on receipt of the bill
itself and looking at it a little more closely, we do have some
concerns. However, with the recognition that there is a need for
privacy legislation for those groups who are currently governed
by codes of conduct and ethics of their profession and so on, I
believe as a physician this legislation overall is helpful, and I
would say that the recognition that information managers and
those in the support area of information technology should also
be bound to privacy provisions is an extremely important
However, as it relates to
the regional municipality of York, we are currently guided by the
Municipal Freedom of Information and Protection of Privacy Act,
and we have some nearly 10 years' experience with that act. We
believe that we have protected privacy appropriately as it
relates to personal health information that is in the possession
of the region of York through the very large number of requests
we have received over time through the MFIPPA legislation. We
believe that Bill 159 will produce an administrative duplication,
and we are concerned that perhaps this is an oversight, as we
know that the current government in Ontario is particularly
averse to any signs of duplication in terms of inefficiency,
because we would therefore see, though it is not entirely clear
but we believe it to be so, that we would be subject to certain
requests for information to be governed by the MFIPPA
legislation. If it related to personal health information, then
Bill 159 would take over. We feel this will result in some
confusion both on the party making the request and perhaps within
the region and our own employees as well.
As an example of how we
have used MFIPPA to protect privacy and yet also allow for
freedom of information, some of you may be familiar with a
situation in King City where we have had numerous requests for
individual lot-by-lot information regarding malfunctioning of septic tanks. We
protected individual homeowners' privacy. We did not release that
information. However, we aggregated the data in terms of
addressing the public good, which was, in fact, "There is a major
problem in King City given the number of failing septic tanks."
All that information has been used in aggregate form, I believe
to a certain degree of satisfaction of all those concerned.
We have also had numerous
contacts with parents concerned about sexual health clinics that
we operate within the region and attendance of their children at
such clinics. We make it very clear that it is our position that
children should always discuss such relevant matters with their
parents but that their privacy is protected. When they give us
that information and come to our clinics, they sign at the bottom
of their history form that they understand and that we understand
that this information is collected with a view to protecting
recommendation, as it pertains to regional municipalities that
provide health care, is that we should be exempt. Knowing that
this might be a somewhat simplistic solution, we will provide you
with some other alternatives.
Our second recommendation
relates to the number of custodians. We have counted at least six
separate custodians at the region of York, and apparently I will
be a custodian in two separate parts of the act where I would be
given different provisions when and where I could provide health
information. Believe me, I have enough trouble knowing where I am
and being one person let alone wearing two hats or more.
We have looked at the act
and we have a specific suggestion regarding the operation of
section 3, so we have a specific modification suggested. By being
exempt from the operation of section 3, the effect is that the
regional corporation would be designated a single custodian,
which at the very least means that we would no doubt have one for
MFIPPA and we would have one for Bill 159.
I am now going to hand over
to my legal colleague for more specifics.
Ms Manuela Di
Re: Good morning. My recommendation is recommendation
number 3: that Bill 159 provide one consistent standard for
disclosure of information in a legal proceeding.
As it currently reads, Bill
159 has two such standards. The standards imposed in subsection
34(4) apply to persons listed in paragraphs 1 to 4 of the
definition of "health information custodian," and subsection
34(1) applies to all the other custodians. Practically speaking,
for the region this means that one of our custodians, namely, the
medical officer of health, would be a custodian and subject to
the standards imposed in subsection 34(1), whereas the remaining
at least five custodians at the region would be subject to
Practically speaking, what
are the differences between these two standards? Very
simplistically, while the medical officer of health can disclose
personal health information for the purpose of a summons,
subpoena or court order, the remaining five custodians at the
region are not able to disclose pursuant to a subpoena, summons
or order. They have to wait for an order after a judge holds a
hearing within a bigger hearing and makes a determination that
the disclosure is relevant and important in the interests of
Why is this such a
complication for the region? Taken in the bigger context here,
not only do our employees, at first instance when they get a
request for information, have to determine what act applies, the
Municipal Freedom of Information and Protection of Privacy Act or
Bill 159, they then have to ask the second question: "Which of
the six custodians at the region is the request being made to?"
Once you determine which of the at least six custodians we have,
then the next question is, "OK, which standard applies to this
custodian in a legal proceeding?"
Therefore, we request a
modification that has one standard for disclosure in a legal
proceeding, either subsection 34(1), which I believe is the most
appropriate standard, or subsection 34(4).
Personal health information
is very important and its confidentiality should be protected.
Therefore, there should be the same standards that apply
regardless of the custodian involved in the situation.
Our fourth recommendation
is that a definition should be provided for the term "community
health program or service." This first comes into play in the
definition of a health information custodian. It basically states
that any person who operates a community health program or
service is a health information custodian. No definition is
provided for that term. It is our submission that not only should
a definition be provided, but that the definition exclude
mandatory public health programs or services. Mandatory public
health programs or services are those required to be operated by
the medical officer of health and the public health department
pursuant to the Health Protection and Promotion Act.
The reason why, practically
speaking, is first of all, the medical officer of health is
deemed a separate health information custodian from those who
operate community health programs or services. Therefore, if
mandatory health programs and services are encompassed in the
definition of community health program or service, what would
happen is the medical officer of health would be deemed one
custodian, whereas the people who actually implement and operate
the program on behalf of the medical officer of health would be
deemed a separate health information custodian.
When you take that even
further, based on that whole discussion I had earlier about
section 34, about disclosure in a legal proceeding, it would mean
that the medical officer of health would be required to disclose
under subsection 34(1) and her employees would have to disclose
under subsection 34(4). The medical officer of health can
disclose pursuant to summons, subpoena or order and her employees
who operate and administer mandatory public health programs on
her behalf would not be so entitled. They'd have to wait for a
judge to issue an
order after he made a determination in the hearing as to whether
this disclosure would be valid in the interests or justice.
I'll turn it back to Dr
Jaczek for recommendations 5 and 6.
As you will notice in recommendation 5, we feel that clause
34(4)(d) is in fact far too broad. This is where we are concerned
about a lack of protection of privacy.
The provision that is
currently in Bill 159 allows for disclosure of personal health
information in a legal proceeding where the conduct or actions of
a person to whom the personal health information relates are at
issue. This does worry us considerably. One can postulate a
number of situations, but as an example and to follow up on the
sexual health clinic example, perhaps a parent might perceive
that a child is threatening in some way, might report that, might
demand that the personal health information related to that child
be fully disclosed. We would have great difficulty with that. We
would see that as a situation where attendance, as an example, at
a sexual health clinic or at any other clinic would not be
relevant necessarily to the situation. We feel there is a
potential there for unnecessary, irrelevant disclosure of
That's the way we seem to
read this particular section and perhaps just some clarification
is required. But the way the wording reads now, we feel there is
a potential invasion of privacy that could occur.
In terms of our final
recommendation, I guess in a sense it does relate somewhat to the
previous example where we feel the legislation may be too broad.
As an example, we have operated for many years in accordance with
the Child and Family Services Act pursuant to cases where a
child's safety is potentially an issue. There it is required that
there be a court order before we release any information. This is
where this is initiated by the children's aid society. Obviously,
we have been in many cases on the side of disclosing to the
children's aid society that we have concerns. But in this
particular case, a court order is issued; our staff are required
to release information. We are not aware of any instances where
this has proved problematic.
We feel that this type of
protection of privacy, and yet the need for health information in
an important situation, is there. This has operated well, and in
fact we would require some clarification as to whether Bill 159
will now supersede those provisions of the Child and Family
Services Act. It's not entirely clear from our reading.
Having made our six
recommendations, we would just like to reiterate that clearly
this is an extremely important matter. We feel, as a regional
municipality and subject to MFIPPA since I believe 1991, that in
fact we have been protecting the privacy of personal health
information kept in our corporation, and a fundamental request is
that we should be exempt. If not, we have pointed out to you a
number of areas where we feel there needs to be clarification, a
reworking perhaps of some of the intentions that are there, and
that we believe and are confident you also understand. With that,
we'd be happy to entertain any questions you might have.
Thank you. We have two minutes so I'll give all the time to the
next party up in rotation. That would be the official
McLeod: I'm getting increasingly concerned at the number
of presenters who say, "Great legislation, we support it, as long
as you exclude us," and that seems to be the tenet of your
presentation today as well. That leads me to two particular
questions I'd like to ask you that are related. The first is, in
what way do you feel that in the absence of legislation you are
either prohibited or limited in accessing information that you
need to do your work, or secondly, that you feel unable to
protect personal health information?
I have no worries in terms of protecting personal health
information currently within the framework we're using, which is
MFIPPA. I have no hesitation there. I would say that having heard
some of the researchers from the institute of health in the
workplace-I'm sorry, I'm not familiar with the exact title-there
clearly are major issues. We have come across this in terms of
identifiers, different organizations using different identifiers,
linking-delinking data. Perhaps it does relate somewhat to design
of the study. We have certainly run across that kind of
It is one of the duties of
the medical officer of health, in fact, to produce a health
status report for the residents of the health unit. As an
example, we're finding it extremely difficult to get at what I
think would be very useful statistics in relation to injury.
Sometimes the police have details of an injury and the emergency
room does not; the OHIP data, which is obviously a billing
system, has a different diagnosis. So we're left at the end of
the day not exactly knowing how many children received injuries
from falling in playgrounds, to take it to that level. There are
all sorts of obviously research-related situations where
collection of data and being able to link it, while protecting
privacy, is a major issue. Of course, we simply say the data is
not available; that's the end result for us as a health unit.
Thank you very much for bringing this presentation before us here
today. I'm sure if Mrs McLeod has another question she will
forward it through research.
ONTARIO LONG TERM CARE ASSOCIATION
That takes us to our final presentation of the morning. It will
be from the Ontario Long Term Care Association. Good morning and
welcome to the committee.
Vaitonis: My name is Vida Vaitonis and I'm executive
director of the Ontario Long Term Care Association. With me is
Lois Cormack, the director of resident care policy with the
The Ontario Long Term Care Association
represents 330 long-term-care facilities throughout the province
of Ontario. OLTCA's mission is to empower long-term-care facility
operators to provide quality and cost-effective health care and
Our comments in response to
Bill 159, An Act respecting personal health information and
related matters, reflect the nature of this mission statement and
the role we play within the broader health care delivery
There is no area where
privacy and confidentiality of information is of greater concern
than that pertaining to personal health information. Let me
therefore begin by saying that OLTCA supports the need for
legislation to protect the privacy of personal health information
and is particularly supportive of the development of specific
legislation that recognizes the special requirements of the
Bill 159 is a comprehensive
and complex piece of legislation. Many of the issues included in
the bill have been reviewed by OLTCA in response to the
discussion paper released by the Ministry of Health and Long-Term
Care last October. We are pleased to confirm that many of the
concerns expressed by OLTCA in response to that paper have been
addressed in the draft bill.
We would also like to
acknowledge that there are specific parts of the bill that we
strongly support. One in particular is the provision dealing with
individuals who are unable to give their own consent. Over half
of our resident population suffers some form of dementia. This
fact alone adds an additional layer of complexity to our
responsibility to ensure that the principle of informed consent
As anyone familiar with the
health care sector knows, issues around capacity are always
difficult. Therefore, OLTCA is pleased that the same protocols
that apply under the Substitute Decisions Act of 1992 and the
Consent to Treatment Act of 1992 will be applied under Bill
I would now like to take a
few minutes to address specific aspects of the bill that are of
concern to our members.
As previously noted, OLTCA
works on behalf of 330 facilities that provide long-term-care
services to approximately 32,000 residents throughout Ontario.
Today, the average age of residents in our homes is 82 years.
Approximately 53% of them have dementia and/or suffer from
Alzheimer's disease, 30% have some form of depression and 20%
have a diagnosis of stroke.
The nature of our role and
the services we provide to our residents has changed
significantly in recent years. Over the past decade the overall
acuity of our resident population has increased dramatically.
This increase in acuity has resulted in an increase in the level
of care provided to our residents. Since 1993, the level of
resident care complexity has increased by 12.5%, based on the
case-mix measure, which the Ontario Ministry of Health and
Long-Term Care uses as an annual measure of acuity.
It is generally accepted
that the resources available to long-term-care facilities have
not, however, kept pace with these growing acuity levels. This
has placed increasing strain on our existing staffing and
resource levels. Given current demographic, policy and funding
trends, it is not likely that present circumstances will improve.
Rather, we anticipate that pressures will continue to grow as the
number of heavy-care residents in our facilities increases.
It is within this context
that the long-term-care facility sector is concerned about the
workload implications that will be required to comply with the
proposed legislation. The policies and procedures to be put in
place with respect to the collection, use and disclosure of
personal health information will place increased responsibilities
on directors of care and other senior staff who manage resident
and staff information within our facilities.
In particular, subsection
3(1) makes it clear that each individual facility will require a
"separate custodian with respect to personal information of which
it has custody or control." The responsibilities of the custodian
are extensive and will, at least at the outset, require intensive
effort to develop policies, procedures and safeguards to ensure
compliance with the legislation.
Beyond the initial
introduction of the legislation, OLTCA is concerned about the
ongoing burden that will be placed on staff to meet the
expectations outlined within the act, including: proper
collection, use and disclosure of personal health information;
education of employees of their duties under the act; responding
to inquiries from the public about the custodian's information
practices; and receiving and responding to complaints from the
public about alleged contraventions with respect to the act.
Therefore, OLTCA recommends
that the Ministry of Health and Long-Term Care confirm its
intention to provide adequate resources to enable our facilities
to fulfill their responsibilities associated with implementation
of Bill 159. In particular, we believe that the ministry should
support an initial training program for long-term-care staff,
develop clear administrative guidelines to ensure consistent
application of the legislation and provide adequate funding to
cover costs that will be incurred by facilities to implement this
Failure to address the
issue of upfront costs will impact on resident care. Reviewing
personal health information files and making decisions about
disclosure or amendments to resident records requires
professional judgment and discretion. It is a job that will need
to be performed by senior levels of staff. Time spent developing
administrative policies, procedures and forms to comply with
privacy legislation will translate into less time for staff to
manage and provide resident care.
are not unique in this regard. Health facilities, individual
health practitioners and health organizations impacted by this
legislation will be presented with the same challenge. Therefore,
OLTCA recommends that the ministry, working with the privacy
commissioner and the
assistant commissioner, assume responsibility for developing
policy and procedure manuals, including generic templates
regarding collection, use and disclosure of information for use
in health care facilities and organizations. Standardizing these
materials will help reduce the time and costs that would
otherwise need to be incurred by individual facilities and
organizations. It will also support a consistent level of quality
and control across the health care system. In the absence of this
consistency, there will be diversity within the health sector
and, based on our experience in other areas, greater diversity
between individual facilities and regions. This diversity poses a
threat to the spirit of the legislation, the integrity of the
system, and the public's acceptance and support for the intent of
OLTCA recommends that
further clarification be provided on the implications regarding
transfer of information between different physical sites of the
same organization. This is an important issue for our members,
given that many of them manage several separate facilities. The
need for greater clarification on this issue is also critical for
the broader health sector, given the increased focus being placed
on coordination and integration within the system.
Section 30(4) of the bill
indicates that the Minister of Health and Long-Term Care and, by
extension, the ministry, would be permitted to receive personal
health information for a number of purposes, including management
of the health system, "including the delivery of services, the
evaluation and monitoring of the system or part of it, the
allocation of resources, future planning and the detection,
monitoring and prevention of fraud." OLTCA does not believe that
these purposes, with the exception of detection, monitoring and
prevention of fraud, require the use of personally identifiable
OLTCA recommends that
future drafts of the bill be amended to reflect the fact that the
use of information for system planning, management, delivery, and
evaluation purposes is fundamentally different from purposes
relating to fraud. We believe it is inappropriate for personal
health information to be made available to government in any form
other than when aggregated or otherwise anonymized. In the case
of fraud detection, access to personally identifiable health
information should be expressly limited in the legislation for
purposes related to the Ontario health insurance plan.
OLTCA has reservations
about the practicality of the new directions relating to the
disclosure of personal health information for research. Bill 159
now states, "A health information custodian may disclose personal
health information to a researcher ... only if a research ethics
review body designated by regulation has approved the project or
program." That's subsection 32(1). We believe that the phrase
"designated by regulation" could have significant implications
for practical and effective implementation.
Who will be represented on
the ethics review body? Will safeguards be put in place to ensure
that decisions made will be for the common good and not personal
gain? These are some of the key questions that remain unanswered
at this time.
Therefore, OLTCA recommends
that the ministry give careful consideration to the issue of the
practicality of the new directions relating to the disclosure of
personal health information for research. This issue has strong
implications for all aspects of health sector research, including
how it is conducted, who does it and for what purposes. Further
consultation with stakeholders is essential to clarify when and
how information will be used to support research projects or
programs and to ensure that the regulations developed in this
regard are effective, practical and consistent with the spirit of
This brings me to my final
point. OLTCA believes that special attention must be paid to the
process put in place to develop the regulations that will enable
implementation of Bill 159. The broad level of consultation that
has brought us to this point should form the precedent for where
we go from here. Continued input from stakeholders is needed to
clarify the details that need to be worked out if this
legislation is to be consistently and fairly applied across the
health care sector. We need to be part of the dialogue that will
clarify such issues as: the safeguards that will be required to
meet the storage and retention of personal health information
expectations; the costs of reproducing health records and other
requirements-these will need to be reflective of the increased
administrative responsibilities assumed by health information
custodians; and the development of guidelines regarding retention
and destruction of personal health information records. To
facilitate this process, OLTCA urges the ministry to work with a
broad coalition of health care providers to make this dialogue
I want to conclude by
saying that OLTCA believes that the government has an
opportunity, and indeed an obligation, to provide Ontarians with
strong privacy rights with respect to health information. At the
same time, there is a vital interest to protect the ability to
transfer data for legitimate health care purposes and promote
better management and greater integration of our health care
Bill 159 is an important
and necessary piece of legislation that we believe could be
improved further by addressing the concerns we have raised.
Thank you for the
opportunity to provide you with our comments. We look forward to
continued dialogue with the ministry and our partners in the
health care sector to ensure that we have a legislative and
operational framework that meets the needs of all Ontarians with
respect to the privacy of their health information.
That leaves us with about a minute and a half per caucus, so I
would ask each caucus to keep it to one or two relatively brief
questions. We'll start with the NDP.
There are a number of areas I'd like to pursue, but let me pick
up on the point of the integrated health care system and services
and the ability to transfer information for legitimate health
care purposes, particularly with the client population that you
deal with. That's critically important. I'm thinking of someone
who is in their home, who has home care services coming in, who
accesses respite care services in one of your long-term-care
facilities, who goes in periodically for episodes of acute
treatment in an acute care hospital, who has medication handled
by a pharmacist someplace. All of that information is so critical
if you're not just treating the disease but treating the whole
person, which is so much about what we need to do in long-term
care. Does this act prevent barriers in any way? Are the
restrictions reasonable? I would think in most cases there would
be a desire on the part of the patient or, if they're not
capable, their family member, to have that information shared in
order to ensure the best quality of care. Have you looked at it
from that perspective and can you share with us your views of the
provisions in the legislation with respect to that?
Cormack: That is the question and that's what we're
alluding to in the regulation, that providers need to be very
much involved in that consultation, and the devil truly will be
in the detail as to how that plays out. It could be extremely
onerous to get consent between providers. The intent of this,
particularly as we move to more electronic exchange of
information, should be that that burden be removed so that
information can be shared, that the client or individual is OK
with that and that's established upfront. Hopefully that will be
worked out in the regulation.
You've made some comments with respect to the ethics committees
that are proposed for research. What would your reaction be to
having the Information and Privacy Commissioner sign off on each
authorization for disclosure?
Cormack: I think that's what we were alluding to in
terms of that designated by regulation. Our concern is, is that
just adding another barrier to research and is there a way of
working with the current ethics bodies, the current processes,
Someone, though, has to ultimately sign off. What would you think
about making that the Information and Privacy Commissioner? Right
now I think it's contemplated that this committee would sign off.
What do you think about the Information and Privacy Commissioner
as the person signing off?
Cormack: We probably wouldn't have an issue with that
other than in terms of timeliness and the bureaucracy that sets
up-and is that necessary-as long as it can be timely and so
McLeod: I share some of the concerns you've expressed in
one section of the bill about the broad access of government to
health information, but your recommendation seems to go very
strongly in the opposite direction. You say, "We believe it's
inappropriate for personal health information to be made
available to government in any form other than when aggregated or
otherwise anonymized." Would that not put some fairly serious
limitations on the ability of the Ministry of Health and
Long-Term Care to carry out its investigatory role in
relationship to long-term-care facilities?
Vaitonis: Under its normal mandate it has that
particular duty and obligation, so we're not looking at it
interfering with that. We would not be opposing that piece of
work that they currently have responsibility and obligation to
Thank you for coming before us here this morning. We appreciate
With that, we stand
recessed until 1 o'clock.
The committee recessed
from 1202 to 1300.
THE MURRAY GROUP
I'll call the committee back to order. We continue our hearings
on Bill 159, An Act respecting personal health information and
We're joined, as our first
group, by the Murray Group. Good afternoon. I wonder if you might
introduce yourselves for the purpose of Hansard, please.
Murray: Mr Chair, ladies and gentlemen, I'm Ian Murray
from Amherst Island.
Burke: Stanley Burke, a neighbour from Amherst
My lawyer, David Baker, Peter Trueman, my son Jacob, and Peggy
It was about three weeks
ago that Ann Cavoukian, the Information and Privacy Commissioner
of Ontario, spoke to this committee. I am here to support one of
her requests, that the right of a citizen to appeal to the
commissioner should be put into the legislation when a citizen
wants to have a health claim record corrected, not to leave it
solely up to Ministry of Health to do so. That's outlined in my
Rather than going through
the brief point by point, perhaps I can put a bit of a human face
on the problem as it has affected my life. About two years ago, I
was phoned by an OPP sergeant asking me if I was aware that there
had been $6,000 to $7,000 worth of claims on my OHIP record by Dr
Alex Scott, who was a neighbour and reasonable friend. I said,
"No, I don't think that's true." Dr Scott pled guilty to almost
$600,000 of false billing to OHIP.
Mr Murray, I wonder if I might interrupt just for second, please.
It's something we do as a matter of form whenever individuals
come before us. I won't take this away from your time, but we
have to caution witnesses in committee and just go through the
formality of it.
While the members of the
three political parties enjoy parliamentary privileges and
certain protections pursuant to the Legislative Assembly Act, it
is unclear whether or not those privileges and protections extend
to witnesses who appear before committees. For example, it may
very well be that the testimony you have given or are about to
give could be used against you in a legal proceeding, so I
caution you to take this into consideration when making your
I'm saying that only to
make sure it's on the record, given that you do mention names in
Reading me my rights. OK, thank you.
I was then alerted that I had some false claims
on my record. About a year ago I decided I'd find out what was on
my file and in April, I received a decoded claims record from
OHIP. I was somewhat disturbed to find that there were two
billings for "malignant neoplasms-brain," which meant brain
tumour, 29 psychotherapy sessions for alcoholism and five
psychotherapy sessions to treat my hysteria, neurasthenia,
nervous exhaustion and something else that I forgot about. I
didn't want those on my record and I thought it would just be a
matter of requesting that they be removed. So I wrote a letter
and said, "Please remove these," explaining the situation, that
the doctor had been charged with fraud etc.
A month later I received a
letter back from OHIP saying that I would be contacted in the
near future. That was May. In August, I received another letter
from OHIP saying that they were unable to action my request due
to technical constraints. However, they were willing to put on a
disclaimer. I was allowed to say I disputed the record. I didn't
think that was anywhere close to good enough. I hired a lawyer
and made an appeal to the commissioner. The commissioner
appointed a mediator. Some time later the mediator basically told
the commissioner she wasn't getting any responses from the
Ministry of Health.
The Ministry of Health made
a response to my appeal but asked that it be kept confidential,
which dragged the proceedings out to the point that my lawyer and
myself did not see the Ministry of Health's response to our
appeal until early January. We responded to that response at the
end of January. The Ministry of Health responded again. We did a
follow-up just recently and it is now, as I understand it,
totally in the hands of the commissioner to make a ruling for or
against. I understand from the media, she has promised to make a
ruling before Bill 159 goes back to the Legislature.
Why should I care, other
than just stubbornness and a bit of pride in my record? I'm not
an alcoholic, I'm not hysterical. I can be a little bit angry at
times. I thought that was a blot on my record. I have since
learned that it could also be a significant hindrance to getting
life insurance, to getting a mortgage, if I want to have a
mortgage. An employer would be very interested in a record of
I'm a sheep farmer. I have
had some predation. I use a gun occasionally when I have to. As
with everybody else in the province who has firearms, I have to
have a firearms acquisition certificate. I understand that Bill
159 will make it much easier for law enforcement officers to have
access to my medical records, along with everybody else's. At
some point, this may get married up and I'm going to have some
really interesting questions asked of me by the police when I go
to register one of my guns or to renew my certificate to have a
I am not an isolated case.
The doctor pled guilty to almost $600,000 of fraudulent records;
mine is about 1%. I think there's a significant number of other
fraud investigations going on through the fraud programs branch
of the Ministry of Health. There are also just plain mistakes
made. It's not that hard for a stenographer to enter the wrong
number or the wrong billing record. You go in and you think
you're being treated for bursitis and maybe your records show you
had a heart attack. A citizen should have a right to have
incorrect records corrected. I think that's pretty common
Are there any
We normally go in rotation. You've left us about three and a half
minutes per caucus.
That was a very clear presentation. I have no questions. Thank
you very much. We appreciate your coming by and giving us the
benefit of your views.
McLeod: In our technical briefings a week and a half or
so ago, the Ministry of Health indicated that Bill 159 would
allow an individual who wanted to make a correction to the health
record to appeal a refusal from OHIP to the privacy commissioner.
I want to read subsection 50(9):
"The individual is entitled
to make a complaint to the commissioner ... if the custodian does
not make the amendment requested by the individual and does not
comply with clause (3)(b)"-which is the provision for the
attachment of a statement of disagreement-"but is not entitled to
make a complaint to the commissioner ... if the custodian does
not make the amendment requested by the individual but complies
with clause (3)(b)."
I read that very clearly as
saying that your ability to appeal to the privacy commissioner to
get your record corrected, as time-consuming a process as it has
been for you, is lost under that clause of Bill 159, because all
the government would have to do would be to attach your statement
of disagreement. Can I ask whether that is also your reading? Is
it one of the reasons why you have come forward?
That's exactly my reading. That's my lawyer's reading and that's
McLeod: I'm not sure if it's fair to ask you to
speculate, but in your situation the government itself has
established fraud in this case. There is clear evidence produced
by the government that there were fraudulent billings and
therefore your medical record is, of necessity, by their own
McLeod: Why? What reasons have you been given as to why
the government would not simply make the correction, when it's so
obvious by their evidence that your record is incorrect?
I honestly don't know. It's been suggested that maybe it's a
cost-saving thing. As far as the dragging out of my case, it
could be that there's a hope that Bill 159 will be passed as is
and there won't be any more unpleasant people like myself coming
forward wanting to have their records corrected.
McLeod: What concerns me is that there are not many
people who, first of all, find out how inaccurate their record is
and, second, are prepared to come forward to highlight what I
think is a very real concern. The fact that the legislation takes
away even the right you have now to have that appeal to the privacy
commissioner is certainly something that needs to be changed if
this bill goes forward in any form.
May I say that if I had it to do again, I wouldn't have done it.
My legal bill is outstanding. It's large. It significantly
exceeds my annual income. So I wouldn't do it again. I wouldn't
recommend anybody else do it again. It's got to be a more
streamlined procedure. I'm sorry, that's a little bit off the
McLeod: Not at all.
Pupatello: Can you explain the implications of C-6 to
your case? For example, we heard from the federal commissioner
that this law is not in parallel to C-6 and if it were taken
through a court proceeding, it may be struck down or whatever.
This implies to me that there is some level of protection under
C-6. Is that some angle that you're considering, or how do you
see its implication in this case?
Baker: Ian has passed that one over to me. Our
understanding is that under C-6 there is a power to correct, but
that legislation is held in abeyance while provinces decide
whether to occupy the field or to bring forward legislation that
is comparable to the federal legislation. So there will be two
questions. One is, will there be legislation which is comparable?
I guess there are discussions about whether 159, without a right
to correct, is comparable to C-6, and then, if there is no
provincial legislation, C-6 would prevail. So essentially what
159 would potentially do is prevent people from benefiting from
the right to have your record corrected under C-6, as well as
removing the right that exists now under FIPPA, or the Freedom of
Information and Protection of Privacy Act.
I'd like to pursue that issue. I'm thinking, in addition to an
amendment which eliminates this out for the health care
custodian, their duty to correct, perhaps the committee should be
looking at something more explicit in terms of the absolute right
of a person to have their health record corrected, and a
procedure for that.
In particular, I'm also
thinking of a responsibility on the part of health information
custodians, where they become aware there may be problems with an
individual's records, to actually advise the individual and to
seek out the correct information.
As I understand it, a
number of your neighbours who were treated by this same doctor
were not called by fraud investigators or detectives. They only
needed to review a certain number of cases and a certain number
of files to have enough evidence to take to a criminal
proceeding. So many people have not been informed, yet their
files could be as wildly inaccurate as yours. Is my understanding
of that correct?
Would you see this legislation perhaps going a step further as
being of assistance to people?
Yes, that would be nice. I can't speak about legislation. I was
in municipal government. I had trouble enough with simple
municipal bylaws, to get a bylaw right. It must be very difficult
to write meaningful, effective legislation. I will say I was
quite surprised, in thinking of it, why the Ministry of Health,
when they realized these records were fraudulent, didn't just
make the corrections without being asked. I'm really astounded
that they seem unwilling to make the corrections even when
One of the things we're hearing over and over again from those
who argue that there has to be an ability to track individuals'
private health information across systems with identifiers, for
research purposes or other sorts of things-it surely has to hit
you right in the head when you hear a case like this-if the
information they're relying on is OHIP-based information and
there isn't an absolute duty to correct the record, let alone a
right to appeal, it compromises many other aspects of health care
research and data amalgamation and other sorts of things.
You have raised some
circumstances of how it can affect the individual. I don't know
if you want to elaborate on that, but I think in one of your
documents you referred to an article about a company called
Second Opinion. That might be interesting for the committee to
The company that Frances Lankin is referring to, written up in
the Star, is offering a service to employers: "If you want
somebody's health records, we'll get them for you. We'll go to
friendly doctors or maybe friendly doctors' stenographers and get
the information." It's not just me, Ian Murray, saying to a
prospective employer, "Yes, check into my records." They can get
that information another way if they want to. As the databases
get more and more effective, let's say, it's just going to be
easier to get information. I just hope that in most cases it's
correct information. What use is false information to
Thank you very much, Mr Murray, and your colleagues, for coming
down here today. Unlike you, I am covered by parliamentary
privilege and I hope you have a satisfactory resolution to your
Mr Chairman, I look at the clock. Can I ask for one minute?
You certainly can have one minute.
Just simply to say that I'm here to support this very brave man
who has done what ought to be done in the public interest.
I have been refused
insurance myself. The claims against me are about $8,000,
comparable with my wife's, similar to his: alcoholism, hysteria,
mental problems and so on. I have been refused insurance by
Liberty, with whom I had done business for 12 years, ever since
we came to Ontario. I was not given renewal coverage and I was
not given any explanation. It may well be that they had a look at
my records. This affects my children, as you know. "Do you have
the following illnesses etc; any history in your family?" If they
say no, they may be accused of lying. If they say yes, they're
I would just like to make
one comment to wind up, and that is, my wife and I voted for this
common sense government, the Common Sense Revolution, and if
there's anybody here
in this room who can tell us where the common sense is in
this-where is the logic? Why is this being done? Why are we put
at risk? Why would a government undermine itself? And finally,
this throws into question the integrity of the medical
profession, to which we all entrust our lives. Why? To support
some bureaucrat? Surely not. Is there a hidden agenda here? Where
is the common sense? If you could tell us, we'd appreciate it
very much. Thank you.
Again, I think we all look forward to Ms Cavoukian's ruling. My
sentiments apply to you and your wife as well and anyone else on
Amherst Island who's been similarly afflicted. I wish you all the
best. But thank you very much for coming and bringing your
perspective before the committee here today. We appreciate
Briefly, Mr Chair, there was a reference to an article in the
Toronto Star about a company by the name of The Second Opinion.
That article appeared on Monday, January 8, 2001. It was authored
by Tyler Hamilton. Also in that same edition of the Toronto Star,
in section E there was a special report on privacy that contained
three or four or five specific articles around this issue of
privacy. I was wondering if we might ask that copies of all of
those articles be produced for the committee for our
I'm sure we can get those for you very quickly.
ALGOMA AIDS NETWORK
Our next presentation will be from the Algoma AIDS Network. Good
afternoon and welcome to the committee. Please proceed.
Adams: Thank you. Everyone has the submission from me in
front of them. I am with the Algoma AIDS Network. We are a
non-profit AIDS service organization serving the needs of people
infected and affected by HIV/AIDS in the Algoma district, which
is 44 communities, 12,000 square kilometres, to be exact.
The staff and board of the
AAN works hard every day to ensure our clients' privacy rights
with their health issues are adhered to. As indicated in the
original request to attend the hearings today, the Algoma AIDS
Network endorses a bill that protects the most sensitive of
information for the people of Ontario, that being health records,
but we cannot support Bill 159 as it reads.
Prompted by a call from a
client voicing concern with the bill, I have come here today to
speak about the importance of keeping health records confidential
and the right to privacy for people having HIV/AIDS. My
colleagues from HALCO have made strong recommendations today,
recommendations which my agency endorses. Therefore, I will not
go over them once again. Instead, I would like to share with you
two stories as an example of when a person's status is disclosed
I bring to your attention
the highlighted area on attachment A-1, which is at the back of
the presentation. This is an excerpt from a page of a life story
written by a young client of my agency. She writes:
"Now that I was becoming
healthier, I decided to return to school. I was so afraid of what
my friends were going to say. Little did I know that no one knew
what was going on. They were very excited that I was back. When
two months had slowly passed, a nurse came to my school to talk
to my friends about it. They were all given papers and pamphlets
to bring home for their parents. Receiving this news, you would
think that the parents would have felt sorry for me. But no, they
immediately attempted to have me removed from school in order to
keep their children safe. So out of school I went and the huge
arguments began. Yet again, my mom fought day in and day out for
my freedom and rights. Even though the ignorant and intolerant
adults did not want me to come back, my mother had won the battle
and I was back"-in school-"where I belonged, with my
The client was nine years
old when faced with the struggle of rights and freedoms. Now 16
years old, several years have passed and this client is trying to
lead a normal teenage life, wanting all the things that teenagers
want: a job, a boyfriend and good grades. But with everyone
knowing their HIV status, this proves to be difficult. You live
your life under a microscope and you are open to persecution.
My second example took
place a few weeks ago, on February 8, 2001, to be exact. On this
day, my agency had two clients in the hospital on the same floor
and in the same ward. After watching client A leaving client B's
room, the nurse working the afternoon shift approached client A.
The nurse asked client A to speak to client B because client B
was not eating and client A might be of help as they were both
going through the same things, that meaning HIV and AIDS. The
nurse was completely out of line, to say the least, as it was
unknown as to how the two clients had come to know each other.
For all anyone knew, they could have been old family friends, not
aware of each other's HIV status. The situation was a potentially
dangerous one as clearly client B's health status was disclosed
without consent. I'd like to add that client A refused to talk to
client B for that very reason.
Our clients have good cause
for concern when they read Bill 159 based on the examples given.
The ripple that occurs when too many people have access to
private health information is truly frightening, and our PHAs
fear that incidents just like the examples used will occur time
and again as health professionals begin to interpret Bill 159 as
Therefore, I have one
recommendation to make to the committee today, and it is that
Bill 159 be withdrawn and the Ministry of Health and Long-Term
Care be instructed to redraft the bill, where the bill truly
embraces a public health privacy model and meets CSA
In conclusion, I would like
to thank you for the time today. I urge this committee to send
this bill back to be redrafted.
We have just over four minutes per caucus for questions. This
time, we'll start with Ms McLeod.
Mrs McLeod: Just to start off,
I appreciate your examples. I think in both examples the health
care professional was out of line according to what we would
expect in terms of the protection of confidential
McLeod: We heard the earlier presentation this morning,
obviously, saying that Bill 159 does not have satisfactory
answers as to how to protect the client's privacy.
Can you suggest what needs
to be in place, though? One of our concerns is, if we just say
let's not proceed with Bill 159, and we don't have anything else
in its place-because it's very difficult legislation to
draft-what are we left with? Based on your examples, I'm
concerned that what we're left with are inadequate ways of
protecting the privacy of that health information. The people
from the regulatory colleges, the College of Nurses, might
suggest that we have that framework for ethical standards and
protection of health information now through the colleges. Do you
think, for example, that a complaint to the College of Nurses
could have been a way of dealing with the breach of
confidentiality in these two cases or is that just not strong
It is one way of addressing the situation. Client A feels very
strongly about it and is going to proceed. However, the damage is
done. The person breached the confidentiality, and although the
guidelines by the college are there and put into place, this
person still acted outside those confines.
My interpretation of Bill
159 in terms of protection is that this was what could have been
considered in good faith, which it was not. Therefore, I think we
have to go back and look at it and make it that much more clear
in terms of how a health custodian acts. I don't know that I am
comfortable with "in good faith." This was done in good
McLeod: The definition of "reasonable"-
So was the explanation as to the children in school with my
client when she was younger, that this was done in good faith.
Yes, it was done in good faith. These children were going to be
protected within the confines of the classroom. It was when the
children returned home that the parents overreacted and my
client's status was released to the rest of the community. It was
a hardship on that family and has been to this day. That client
still faces situations. The other day, outside of the schoolyard,
one of her friends was not happy or pleased with her, and she
said, "Oh, don't touch me. I don't want to catch what you've
got." That is what she has to live with, and that is on a larger
scope because it was disclosed by a health professional.
McLeod: Your examples really bring to life the
importance of that excuse on the basis of what is considered to
be reasonable, which was raised earlier this morning.
In answering you, it needs to be clearer and it needs to be more
defined, and black and white, absolutely, so that there isn't a
situation such as that again.
If I understand the plea you're making to the committee, it's not
to do away with the bill and not bring it back. In fact, you
believe there's a need for greater privacy protection than exists
But this bill falls short of the mark of what's required; is that
Exactly. Our interpretation is that it can pass. Bill 159 just
leaves it open to pass through so many hands that it does not
I think when we have real-life examples, it makes it much easier
for us to understand. This morning, in the presentation from the
HIV/AIDS Legal Clinic, we heard reference to studies that have
been done on the anonymous testing program in place in Ontario. I
remember at that point in time there was a big controversy about
whether this was the right way to go. I heard compelling evidence
from people that without that protection of privacy, and in fact
anonymity, it would have an incredible chilling effect on
individuals' willingness to seek treatment and to seek help. In
so many aspects of our lives, and particularly if we suffer from
a disease or some disability that has a stigma attached to it-and
there are many different kinds that have stigma-that's a reality
for people to live with if that information is disclosed. I
wonder if you have any more information on the studies around the
anonymous testing, on what any of the numbers were. Did it in
fact increase the number of people proceeding with testing and
I'm not sure in terms of the numbers on the Ontario scale. I will
speak to you about what happens in my agency when I answer the
phone and somebody says, "I think I need to have a test." When
I'm speaking with them, I give them the three options: nominal,
non-nominal and anonymous testing. The only person who has ever
taken me up on a nominal test, which is your name test, was
because they were going to work in the States and they needed to
have it. All of the tests I have made referrals to for the health
unit to do testing have been anonymous, except for one, in a
two-year span. People are very closed when it comes to the
thought of "What happens if I'm HIV-positive and what does this
mean to my life?" It's not enough just to fight the disease. The
stigma attached is so severe it can ruin your life.
I have a client who lived
on St Joseph's Island who received a piece of mail that had a red
ribbon on it from an AIDS service organization sending them a
newsletter. Within a day, Richards Landing knew this person was
infected, and that was only through speculation and that was only
through one piece of mail. It ruined his life and he had to move
from Richards Landing. Therefore, privacy is essential for people
living with HIV because the stigma is so harsh.
Mrs Tina R.
Molinari (Thornhill): Thank you very much for your
presentation. Just a question on the example you gave about the nine-year-old in
school. You indicated-quoting the individual-that a nurse went
into the school to talk to the friends about it and they were
given papers and pamphlets. As you were reading, I thought that
was just an education session for the students in the school, but
what I gather from this is that the student was actually
identified among all the friends.
Absolutely. The education was meant to enlighten the children,
and yet it was pointed out that it was very much the student who
was sitting there. That was the reason she was there.
Molinari: Was that done directly or was it implied? This
seems to me a very disturbing situation, if that in fact happened
in a school where students are getting an education on an issue
and yet there's one who's being specifically identified.
It was. You're going back a certain portion of time. That's why
the HIV education module is in the Ontario education system now.
It was born out of that case in point right there. The education
system has changed and has been worked so that children are
educated on HIV, but very little was known when this happened to
this child in particular.
Molinari: How long ago was this?
About seven years ago. I'd like to point out that that accounting
is her accounting. It made it much more personal than even the
newsreels I have watched in the past because it was what she went
through, what she was bearing. It makes it all the more emotional
than watching the newsreels as to when that actually
Thank you very much for taking the time to come before us here
today. I know it's a long trip and we appreciate your
COLLEGE OF PSYCHOLOGISTS OF ONTARIO
Our next presentation will be from the College of Psychologists
of Ontario. Good afternoon and welcome to the committee.
Yarrow: Good afternoon, Mr Chair, committee members.
Thank you very much. I'm Catherine Yarrow. I'm the registrar for
the college, and with me is Mr Gordon Rimmer. He's a public
member on the council of the college.
I'd like to outline briefly
the things I'll be talking about and then I'll just summarize
them at the end. First of all, I'd like to say that the college
believes this legislation to be very important and comprehensive.
We hope that this time it sees its way through the House. There's
certainly been considerable discussion about this type of
legislation now for the past two decades. We believe the
legislation has a number of positive features, one of which is
the inclusion of unregulated providers and researchers in the
definition of health information custodians. We think it's
important that these groups are included.
We also think the section
on the quality-of-care provisions is very important. The consent
concerning personal health information is a strongly written
section and important. The sections which provide for disclosure
where there's a potential risk of serious harm and which preclude
access where there's a risk of harm are certainly provisions
we've been advocating for and strongly support. Sections allowing
for disclosure of college proceedings are also sections that we
consider important to our functioning.
There are areas I'll speak
to that we have concerns or would like to see clarification on.
We have a concern that private insurers do not appear to be
covered by this legislation. It's not clear whether the Ministry
of Consumer and Commercial Relations will be promulgating
legislation which will cover that off or whether the federal
legislation, Bill C-6, will cover that off.
The other area I'll speak
about is some possible ambiguity around school boards and how
they fit in, whether or not they're custodians within the meaning
of this act. We think there's still some ambiguity remaining
possibly respecting the functions of committees of the regulatory
Finally, we'll speak to an
issue relating to the health colleges as custodians, particularly
where it relates to issues of amendment of records.
As I mentioned at the
outset, we do have a concern that insurers don't appear to be
covered under this legislation. There are certainly many
protections for providers within the health sector and there are
opportunities under this legislation for custodians to release
information to other persons who may be covered under other acts.
The restrictions on those persons who receive that disclosure
we're not sure are sufficient to protect the clients of the
insurers, both disability insurers and automobile insurers. We
also have some concerns that the provisions for use of
information outside of Ontario are, at this point, fairly
non-specific and in collecting information it appears as though
it may be quite difficult for a health information custodian
who's collecting information to provide sufficient information
about potential disclosures to an individual, to have that
individual give informed consent to the collection of that
With respect to school
boards, the school boards are covered under the freedom of
information and protection of privacy legislation. There are
health professionals who do work for school boards.
Psychologists-I guess the other professions, nurses, can speak
for themselves-provide both educational services and
health-related services. Some of the educational services are
covered under the Education Act and information is required to be
on the Ontario school record and is accessible to parents under
certain conditions. But the health professionals such as
psychologists and psychological associates also provide health
services of a confidential nature relating to adjustment
difficulties a child might be having, anxiety, depression, family
difficulties. It appears under this legislation that the
psychologist or psychological associate would be a health information custodian with
the appropriate obligations, but it's not quite clear how those
records and the provisions of this legislation would interact
with any requirements under the freedom of information and
protection of privacy legislation, which talks about personal
information, mentions psychological information. But I think it's
a little bit confusing right now and perhaps some more
clarification around that application would be helpful.
With respect to the section
in part II of the legislation that speaks to non-application of
the act, it's not clear that it specifically excludes health
information collected or created for the purpose of proceedings
of health regulatory college committees, whether it covers all
college committee functions. Quality assurance committee seems to
be quite well covered. It's not clear whether other committee
functions, including registration, fitness to practise,
complaints and discipline are adequately covered in this
legislation or whether the RHPA provisions would prevail. We
would recommend that the RHPA provisions do prevail in any cases
where there's any ambiguity or apparent conflict.
Under part III, it's not
clear whether section 16 will allow college employees, agents or
investigators to obtain health records relevant to an
investigation or an inquiry under the RHPA or whether this is
dealt with sufficiently elsewhere in the legislation.
Under part IV, consent
concerning personal health information is a very important
section, quite thoroughly written. As I say, our only concern is
whether or not the consent for collection is sufficiently
informed when it comes to possible disclosures where no further
consent will be sought.
We're very pleased to see
that if a health information custodian believes that there's an
imminent, significant risk to someone's safety, whether it be the
individual about whom the health information relates or to
another individual, that disclosure is permitted under this
legislation. That's consistent with other legislation and our own
standards of practice.
We're also very pleased
that health information custodians may disclose personal health
information for proceedings that are dealing with the competency
or the conduct of members of health professions because we rely
very heavily on this type of information. Similarly, any
assessment of a member of the college where there's an issue of
fitness to practise, we're pleased that this legislation appears
to allow for disclosure of that information to the college.
We're also pleased with the
protection for the quality assurance provisions. While most of
the quality-of-care provisions appear to relate to risk
management in facilities, it appears that this will cover the
college's quality assurance program and we hope that proves to be
true when it actually comes to the application, because it's
quite important that this information be collected in a way that
members can be candid with the college about their developmental
needs, their professional development plans, and not have any
fear that that information would be introduced into a civil
proceeding. It appears that this legislation protects that.
Finally, with respect to
the college as an information custodian, this legislation would
require the college to amend a health record that was held by the
college, as it now stands, if the individual about whom the
information pertains requests an amendment, or else the college
would be required to write a note of disagreement and append it
to the record. The college, as a regulatory body, does not
collect health information for the purpose of providing a health
service, but rather for the purpose of regulating the profession
in the public interest. The college would not be in a position to
evaluate the appropriateness of any request to amend a health
record, as the college is not creating the original health record
in the first place. It would also, in addition to placing an
unrealistic expectation on the college, add the administrative
burden of having to notify others to whom we have provided this
information in the context of one of our proceedings of the
request for an amendment and the college's either amending or
refusing to amend it. I would suggest to you that in every case
the college is likely to refuse to amend a health record because
we would not be in a position to evaluate the appropriateness of
making such an amendment and would much rather see that be
carried out by the originator of the health record than by the
college. It would be unfortunate if this then resulted in reviews
being sought by the privacy commissioner and tying up that system
unnecessarily for an amendment and a provision which may not
really have been intended to capture the colleges, but has done,
as the legislation currently stands.
When it comes to the
regulation-making authority, we would like to suggest that
consideration be given to exempting the colleges from the
provision for health information custodians, provided that you're
satisfied that the Regulated Health Professions Act covers all of
these same duties of privacy and duties around consent and
disclosure that this legislation would cover.
To summarize, then, this is
important legislation, it has a number of positive features which
we hope will be maintained, but we do have some areas of concern
and areas where we think there may need to be some
I'd like to ask Mr Rimmer,
as a public member, to recount for you one or two situations
which he has actually been acquainted with which suggest some
further cautions around how information is managed by health
Rimmer: My main concern has been that with many of the
cutbacks in funding, the small agencies have done what they can
to economize on office staff and so forth. In many cases you
don't have a secretary or a receptionist. If you go into an
office, as I have had the experience to do, a small psychiatric
clinic-I was there to set up an appointment with a counsellor. I
found the outer door of the office open but there was no one at
the reception desk. The door to the counsellor's office was
closed and muffled voices could be heard, so obviously someone was there. I decided
to wait until they were finished their session. The phone rang,
and I guess the counsellor decided that they were going to just
let the answering machine answer the phone call. That was fine,
except the answering device was in the outer office and I could
hear the person who was making the call identify themselves,
identify their problems, and any confidentiality went out the
window. I didn't see anything in these regulations that covered
the answering devices.
The other thing that I
would be concerned about, these answering devices have tapes and
they save some of this information. I just wondered, does this
tape become a part of the client's confidential file?
Mr Chair, we'd be happy to entertain any questions of the
committee if there is time.
We've got approximately a minute and a half per caucus.
You're the third college that has come forward and expressed a
desire not to be a health information custodian, so I think we're
getting that message loud and clear.
One of the other things
you've said which echoed the other colleges' presentations was
that where there is a conflict between the RHPA and this
legislation, the RHPA provisions should prevail. I really worry
about that kind of blanket provision. I would like you to tell me
where the conflicts are that you see, what the problems are, and
why the RHPA provision is superior. We already have some general
concerns about parts of the legislation which allow legislation
like the Ontarians with Disabilities Act and the Ontario Works
program to be exempted completely, and about the minister being
able to exempt anything else that he or she wants at some point
in time. Do you have specifics that you can give us about what
provisions you're worried about and why the RHPA provisions are
superior to the Bill 159 provisions?
The main thing is that it's more a question of whether the
legislation here is sufficiently clear so that it might be
accomplished either way. For instance, under this legislation,
section 16 allows for "the collection, use, disclosure, retention
or disposal of information ... in the course of the person's
duties for or on behalf of the custodian." We're wondering
whether this is sufficient to cover college investigators who are
sent out by the college to gather information in the course of
conducting a complaints investigation, or whether that needs to
be covered elsewhere. Elsewhere, custodians are allowed to
disclose to a college.
We just want to be sure
that nothing restricts in any way the investigative authority we
have when we appoint an investigator under the Regulated Health
Professions Act. The reason for that investigative authority is
to ensure that, wherever a health record is relevant to our
protecting the public interest, we're able to obtain that without
undue invasion of anyone's privacy, but to ensure that it is
possible and that there is no opportunity for someone to hide
behind any legislative provision and argue that they shouldn't be
accountable to the college for those services, or that as a
facility they shouldn't provide those.
If I might take it back to the question of correction of the
record, you explained the difficulties you had with respect to
correcting the record. What do you think the answer is? Should we
say that you have to go to the person who originated the record
to correct it?
I think where that person is still living and available, that
would be preferable, inasmuch as I think that person would be in
a better position to judge the appropriateness of making that
correction. We are essentially secondary or tertiary custodians
by the time the information gets to us and not in a position to
give a clinical opinion. If it's a matter of a client or a
patient or a person wanting an amendment to a matter of fact
about their health status, for instance, we would not be in a
position to properly evaluate that. So I think, where feasible,
it would be preferable that that correction be made by the
originator, the creator of the record.
McLeod: I think this is an appropriate question to the
college as opposed to the field practitioners. I wanted to ask
somebody about the changes in the age of consent to disclosure of
health information-so you're it-because the Mental Health Act is
quite different now than what Bill 159 proposes. You also touched
on school boards in your presentation, and of course the
Education Act is very different as well in terms of disclosure of
information. The question would be, have there been any problems,
from your experience, with the fact that children under the age
of 16 can bind the practitioner to non-disclosure?
Yes, you're right, the provisions have been very different in
various pieces of legislation, and quite confusing. This
legislation now parallels the Health Care Consent Act in respect
of whether or not a child has the capability of understanding a
decision respecting his or her own personal health information. I
think there's a question of a literal interpretation of the law
and good professional practice. There certainly have been
situations where, for instance, school boards have been very
nervous about following along the Health Care Consent Act
provisions which would allow the child to make treatment
decisions and, by extension under common law, decisions about
personal health information, and have adhered to the stricter
requirements for parental involvement in those decisions around
treatment or disclosure.
In actual practice, that
has put the health professionals in some difficulty. It has put
members of our college in some difficulty, where a student may be
wishing to seek counselling for something that student does not
wish the parent to know about. It may discourage the student from
seeking that assistance if there is a fear that the parent will
automatically be involved. What we typically expect, as a matter
of good practice-and it's more typical to the procedure under the
Child and Family Services Act-is that if the child initiates a
desire for assistance and is capable of understanding the nature
of the assistance, the consequences of getting assistance and the
to release of personal information, that child's wish be
respected; that the professional discuss early on with the child
the possible desirability of involving the parents in either
disclosure of that information or participation in treatment
decisions; and that it ultimately be the child's wishes that
prevail, unless there is a clear risk of harm, in which case,
then, the professional would override the child's wishes and
disclose or involve the parents, if the child was clearly at risk
or the child was about to put someone else at risk.
Thank you both for coming before us this afternoon.
ONTARIO DENTAL ASSOCIATION
Our next presentation will be from the Ontario Dental
Association. Good afternoon and welcome to the committee.
Brooke: Good afternoon. My name is Ralph Brooke and I
chair the health policy and government relations core committee
of the Ontario Dental Association, the ODA. With me today is our
director of professional affairs, Linda Samek, and our director
of government relations, Frank Bevilacqua.
The Ontario Dental
Association is the voluntary professional organization which
represents the dentists of Ontario. We are pleased to have this
opportunity to meet with you today to discuss Bill 159, the
Personal Health Information Privacy Act.
We want to comment on four
aspects of the proposed legislation: (1) the need to include
additional categories of health information custodians; (2)
consent, as it relates to the legislation; (3) consistent
standards for ethical review committees; and (4) the need for a
single piece of legislation that deals with health information
across all sectors.
First, custodians: As
regulated health care providers who collect, manage and use
personal health information on a daily basis, we are wondering
why insurers and other third parties that routinely undertake
similar activities do not appear to be captured under the
legislation. We recognize that provisions exist in the
legislation that permit other persons or classes to be designated
as custodians by regulations. However, we suggest that known
classes of custodians like insurers should be clearly designated
within the legislation as health information custodians.
Insurers have "custody or
control of personal health information as a result of or in
connection with performing the person's powers or duties or the
work described ... " in the introduction to this section. There
is no category which identifies insurers as custodians, nor is
there an exemption for insurers. It is the silence of the
legislation on this matter that concerns the dental
The Ontario Dental
Association supports the stated purposes of the act. It is
because of our interest in protecting the confidentiality and
security of personal health information and the privacy of the
individual, as outlined in section 2 of the proposed legislation,
that we recommend that insurers be named as health information
Second, consent: the
legislative proposals list four elements of consent: (1) it must
relate to the information; (2) must be informed; (3) be given
voluntarily; and, (4) it must not be obtained through
misrepresentation or fraud. The ODA supports this approach to
consent which is reflective of the Health Care Consent Act. With
respect to the release and use of information, we also believe
that the consent for collection, use or disclosure of personal
health information must be timely and current.
There are circumstances
where individuals enter into a contract for services and the mere
signing of the contract includes clauses which permit the
continuous disclosure and use of personal health information to
third parties. We recognize that it is necessary to enter into
contracts for services, but we are concerned that the protection
of personal health information is seldom a central focus of the
contract and that there may not be a comprehensive understanding
of how agreeing to accept employee or other benefits may affect
the sharing of one's personal health information in the
Simple acts, such as
agreeing and signing to receive benefits from an employer as part
of a compensation package, often mean that an insurer will be
authorized to receive and use personal health information without
further confirmation or agreement from the individual. In these
instances consent is not always informed and it certainly does
not reflect the circumstances which surround future collection,
disclosures and uses that flow from such a "consent."
The Ontario Dental
Association recognizes that the right to privacy of personal
health information is not absolute, yet in the spirit of the
legislation designed to protect personal health information, it
is essential to keep to a bare minimum those instances where
disclosures can occur without informed consent. In an effort to
address at least the timeliness of the consent, we recommend that
third party payers or employers be required to inform the
individual of what personal health information is to be collected
and how the information will be used, including how it may be
shared with any other individual, group or organization.
Further, we recommend that
related consents provided to third party insurers be reviewed and
renewed on an annual basis so that individuals are continuously
aware of who has been granted access to their personal health
information and how this information will be used.
We understand the
importance of introducing administrative ease into the billing
process for health care providers, however the need for
administrative ease should not be permitted to negate
requirements for informed consent. Clause 29(1)(c) places no
limit on the personal health information that a custodian may
disclose "for the purpose of obtaining payment for health care
provided to the individual." The Ontario Dental Association
appreciates the good intentions of this clause but believes that
patients should be
informed of and consent to the sharing of personal health
information to third party payers.
The next point is ethical
review committees. There are many institutions, organizations,
individuals and for-profit companies with an interest in research
involving personal health information. The diverse nature of
research and researchers highlights the need to develop clear
rules to guide the release of personal information for research
purpose. The Ontario Dental Association believes that research
proposals, projects and programs that propose to collect and/or
use personal health information should be reviewed and approved
by an appropriate ethical review committee.
While we support the
general approach regarding the use of ethical committees outlined
in the legislation, we wish to ensure that the legislation does
not dismiss the good work already being undertaken by existing
ethical review committees within institutions throughout the
province, nor would we want to see the creation of unnecessary
bureaucracy that may have a negative impact upon research
initiatives. We believe that the proposed legislation provides a
framework that will enable careful evaluation of existing ethical
review committees to ensure that a common standard for the
protection of all personal health information is applied for all
research that proposes to use the personal health information of
And lastly, the need for a
single piece of legislation dealing with health information in
all sectors: as we stated earlier, the ODA was puzzled that some
third parties that collect, store and use personal health
information are not included in Bill 159. In the interests of
establishing a common framework to protect the confidentiality
and security of personal health information and the privacy of
the individual to which the information relates, we encourage the
introduction of a single piece of privacy legislation that will
take into consideration the potential for linking and re-linking
data by third parties in a manner that may allow for personal
health information to be used in a way that is inconsistent with
the original collection of the data.
To sum up, the Ontario
Dental Association recommends that the following provisions be
included in the bill:
(1) Additional categories
of health information custodians such as insurers;
(2) Consent as it relates
to the legislation;
(3) Consistent standards
for ethical review committees; and,
(4) The need for a single
piece of privacy legislation that addresses health information
across all sectors.
In conclusion, the ODA
supports the spirit of the legislation. We commend the government
for bringing forward a bill that is vitally important to all
Ontarians and we thank you for providing us with the opportunity
to address the committee.
Thank you very much. That give us about three and a half minutes
per caucus. Ms Lankin has indicated she had no questions, so we
will start this time with the government.
Mr Wood: I
wonder if I might ask you about your point as it relates to the
ethical review committees. Ultimately, somebody has to have the
final sign-off. Do you think that should be a public official,
for example, like the Information and Privacy Commissioner, or do
you think that should be someone who is, so to speak, further
down the system? Who would you recommend as having the ultimate
I have a bias here, because when I was vice-provost of health
sciences at the University of Western Ontario, the ethics
committee reported to me. But I was responsible to the senate and
I was quite satisfied that the senate of the university, as the
final place where these things would go, was satisfactory. Within
the hospital, the overall medical advisory committee would have
the final say. I think that most of our public organizations such
as universities, hospitals etc, are responsible enough to be the
Why would you say that rather than someone who is chosen by the
I think it's important that there is an overall knowledge that
these ethics committees are working appropriately and I have no
problem with someone chosen by the Legislature overseeing that,
but these committees work well, by and large. We know that
because half the people who submit documents to us complain that
we're being too strict, so I think that's one measure of the
ethics of those ethics committees.
Those complete my questions, unless there are other questions,
which there don't seem to be. Thank you very much. You've been
Pupatello: In the scope of a dentist working on his
patient, what are the protections for all of the people who work
in a dentist's office in terms of right to information, their
duty to seek consent and their disclosure-the protections for
It's absolute. Anyone working in a dental office has to know that
every single piece of information that comes their way is to be
regarded as absolutely confidential, the same way it would be in
a medical office.
Pupatello: Is each one of those positions within the
office subject to a particular college that outlines that?
Yes, they are, the hygienists to their college and the dental
assistants to their college. A secretary would not be, but
secretaries act as confidential agents.
Pupatello: Because they are mandated by some
Because they are informed that this is confidential
Pupatello: Why would the ODA focus on third party
insurers in the discussion of this bill?
Where we see what we feel is something that is missing, we have
the right to point this out to the committee.
Mrs Pupatello: Your example was
interesting about how people don't realize, when they're signing
on, what they are signing on to, and I agree with that. What I
want to get is your opinion. When signing a contract to take on a
job, you need to sign the contract, and then by signing the
contract you also happen to be agreeing to pass on all your
personal health information. If you don't sign the form, you
likely don't get the job. There's a whole world of discrimination
that goes on there that is very difficult to fight and gives
That is in fact coercion.
Pupatello: There is no protection, at least none that is
obvious, that doesn't discriminate against you. In the meantime,
you don't get the job. That seems to be the reality out
Are you aware of what
insurance companies might do with personal information in
addition to reviewing what level of benefits that person might
I'm not fully aware of that. I don't know whether Ms Samek or
Bevilacqua: The principal concern relates to the fact
that dentistry is largely outside of the public sector in terms
of payment, so by and large we deal with third parties. The
issues revolve around the nature of the consent and whether or
not it's informed and whether a general consent for allowing a
practitioner to transmit a claim to an insurance company
electronically gives that insurance company the right to request
all sorts of supplementary information beyond what's required for
payment of a particular claim or for assessing liability in terms
of whatever contract they administer.
With respect to dentistry,
a lot of it is transmitted through EDI, and the consent that
generally is signed and which a practitioner holds on record in
the patient file allows the dentist to transmit the information
that's in that claim. So a lot of our issues revolve around
additional requests for information where in fact the patient has
not provided a consent to release specific pieces of the record
which the insurance carrier or dental consultant may be
Pupatello: So then the dentist is put in the centre of
passing on information to meet the needs of the insurer-the
patient needing to pass it along in order to be insured-and you
are just along for the ride, passing along information that as a
professional you would never do without appropriate consent.
Bevilacqua: I think the major concern we expressed
related to the clause in the legislation that allows a
practitioner to disclose any information that's required to
receive payment. We certainly are concerned about that provision
in the legislation.
Ms Lankin, you do in fact have a question?
I do. The third party who is receiving that information, is it
your reading that they would not be covered by the recipient
clause within the legislation?
Yes, as far as I can tell.
I just wanted that clarified. Thank you.
Thank you all for coming before us here this afternoon. We
appreciate your presentation.
Our next presentation will be from Alexander Franklin. Welcome to
the committee. Just a reminder that you have 10 minutes for your
Franklin: Mr Chairman, Past Minister Lankin, members of
the standing committee on general government, I speak as a PC
Party member and physician. Bill 159 may cost the PC Party lost
votes. It will certainly cost MDs lots of money and time. There
is also the $50,000 fine as an extra worry. If this bill is
passed as it stands, it will make clinical practice even less
attractive as compared to non-clinical medical careers.
What are the advantages to
the taxpayer? The legal right to see their chart. Few do. Why
not? I suggest that most do not want to be burdened with the
uncertainty that is part of medicine. It has always been the case
that clients who take responsibility for their health will take
copies of their specialist reports when they travel.
The client is mainly
worried about details of sexually transmitted disease, unwanted
pregnancy, psychiatric conditions and genetic disease being used
against them, with possible monetary loss and social ridicule.
Even with maximum paper security, one's presence at a specific
hospital clinic or at a special hospital such as Princess
Margaret gives a good clue as to the diagnosis. Mailing
information is not secure unless signed for. There is the risk
that the post could be opened by third parties. The chart may
also be seen by different agencies: the College of Physician and
Surgeons, MD assessors, review committees, appeal boards. Lawyers
can, of course, demand reproduction copies of the whole chart.
Insurance companies, like credit agencies, have central records
of medical information. OHIP has diagnostic and treatment codes
which can be matched to a name and address. No government in the
world has ever been able to prevent secrets leaking. Medical
secrecy is only possible if one's face is not known
internationally and one receives attention in a different
continent using an assumed name and paying with cash.
To put this bill into
practice will cost a lot of tax money in material and time.
Hospital records will have to be protected with metal grilles or
kept in locked cabinets. Levels of security clearance would be
established on a need-to-know basis. The present uncontrolled
access to hospitals would have to change, with proper
identification of visitors. The $500,000 corporate fine would
make this necessary. MDs would also have to buy locked storage
facilities and a burglar alarm system to prevent a Watergate. The
Ministry of Health should reimburse MDs for the extra expense,
similar to a business development grant.
I suggest that voters be
told of the taxpayers' cost of this bill: commission expenses,
medical administrative costs, legal expenses. They can decide
whether all this is worth the price at a time when the Ministry of
Health is short of money for essentials. Thank you.
Thank you. You've left us about two minutes per caucus for
questioning and we'll start this time with the official
McLeod: I hear some of the concerns you've expressed
about the cost of implementation of the bill, but it leaves me
with a concern about your sense of the level of security of
patient records now. Are you suggesting that there is a fair bit
of access in physicians' offices to patient records now beyond
what is absolutely required for health purposes?
Franklin: I don't quite understand the exact nature of
the question. Can you make it slightly more cogent?
McLeod: Sure. You're suggesting there's a great deal of
cost involved in having to meet the privacy provisions of this
bill, and I'm just wondering how those costs are greater than the
current privacy positions that any physician would take. If there
is a lot more cost involved in implementing this bill, that gives
me some concern about how perhaps lax the privacy provisions are
in physicians' offices.
Franklin: May I ask whether your physician is a solo
physician or one of a group?
McLeod: Let's say a group, as opposed to my spouse,
Franklin: I think you can go to most groups and you'll
see as you come in a whole wall of charts and they are open,
vertical stacks. That I think speaks for itself.
McLeod: The physicians are governed, as we've been
hearing all morning with other colleges, by a fairly rigorous set
of rules about the protection of the privacy of those files. Are
you suggesting that those rules either are inadequate or that
they're not being followed?
Franklin: The rules are being followed, but things speak
for themselves. I'm sure in your group practice you visit, you
see the other charts behind the receptionist's desk. When you go
in you see the receptionist and usually the charts are filed
right up to the ceiling. There's no metal grille, usually. The
reason I asked whether it's solo or group is that a solo
practitioner can afford to have steel cabinets-I have had them
for a quarter of a century-but in a group there are so many
doctors that they just don't have the room; the space is very
expensive. As I say, you can see for yourself when you go in what
security there is, and there's as much security as one can have
in that situation. I think that answers the question.
My question was on the same point. It's nice to see you again, Dr
Franklin. Many people who are criticizing this bill from a very
opposite point of view to yours are saying that this bill
actually is about enabling access to private health information
in a whole range of circumstances: the mandated disclosure,
discretionary disclosure, on and on. Often we've been told that
the Hippocratic oath that physicians swear to, along with the
provisions under the self-regulatory scheme in their college, is
a stricter standard of privacy than what is actually being
proposed in this bill. You obviously have a different opinion,
and I'm wondering if you could spell out for the committee what
it is in the nature of the bill that you believe would require a
physician to take greater privacy protection measures than the
Hippocratic oath and the College of Physicians and Surgeons
Franklin: The situation actually, as an aside-it doesn't
really make all that much difference-is that not all universities
require the Hippocratic oath. The University of London doesn't,
and when I took my Canadian qualifying examination they didn't
and in the USA one doesn't. However, $50,000 does make one more
alert to the question of security. It's a question that medical
practitioners couldn't practise if people thought that
information was going elsewhere. They simply would be out of
business. The second thing is common sense: who is going to
confide in you once your reputation has gone? It only takes once
Apart from the legal side,
there's the professional obligation that you don't disclose. In
fact it's very sad when the courts force disclosure. The power
that the lawyers have to actually have a photocopy of the whole
chart, cover to cover, is quite frightening.
The answer to your question
I think is $50,000.
Mr John O'Toole
(Durham): Thank you very much, Dr Franklin. On a lighter
note, I think what you said earlier gives me serious question to
re-examine this bill. I hope you take that in the right line.
It may cause the rest of us to support it, Mr O'Toole.
O'Toole: More on the same tone, you mentioned in your
second-last paragraph that there would be a burden for alarm
systems and security measures similar to Watergate, you call it.
Watergate wasn't a computer issue; it was a hard file issue. My
point to you today is, what security do we really have outside of
unlocking the door and walking in and getting whatever you need?
The public today think that all these records that are in paper
format are somehow more secure than something in a data format. I
question whether there is the security that patients would like
to be assured of in today's format.
Franklin: Mr O'Toole, you're quite right. The security
depends to some degree on how the physician wants to protect
their property. I personally for the last 30 years have always
used a burglar alarm system, which interestingly enough has not
prevented me being burgled twice. However, there it is. Once it
was through a small opening which a child could get through, but
that's an aside. A burglar alarm system does help, and as a solo
practitioner I can afford to have steel cabinets. In a group
practice, as I mentioned before, it's much more difficult. One
would really have to go into a major investment for large steel
cabinets or some grille which could be moved across and locked at
night. Of course, a determined burglar can get through that, but
it's a reasonable protection.
I didn't want to elaborate
in the text, but there's also the problem-and a dental colleague
mentioned it-of part-time workers. The summer program for
students is an
excellent program and certainly a great help to the student and
to the practitioner. They can't really be held to oaths of any
secrecy. So there is always the human weakness which comes into
this. I think that's generally understood. But then most charts
don't really have all that much which is of interest to anybody.
Most charts are really quite dull, and really why would anyone
particularly want to look into them? It would be rather a waste
Doctor, I'm afraid I'm going to have to cut you off there; we've
gone over time. Thank you very much for coming before us here
today. We appreciate it.
ALLIANCE FOR LIFE ONTARIO
Our next presentation will be from Alliance for Life Ontario.
Good afternoon and welcome to the committee.
Jeffs: Firstly, I would like to thank you for the
opportunity to appear before you today. My name is Jakki Jeffs
and I'm executive director of Alliance for Life Ontario. We are
the provincial coordinating body for all of the local educational
pro-life groups in Ontario. Joining me today is Mr Geoff Cauchi,
a lawyer by profession and a volunteer member of our board of
directors. He is also our volunteer legal counsel. Mr Cauchi has
given presentations to a number of our local groups since 1995 on
the lack of respect for parental rights in the Health Care
Consent Act and the Substitute Decisions Act.
Almost exactly five years
ago, in February 1996, we made a detailed presentation to the
standing committee on the administration of justice on Bill 19,
which was the bill that became what is now the Health Care
Consent Act. We have included with our written materials
distributed to you today a copy of the Hansard record of our
presentation then. We also have a history of involvement in the
consultation process of previous efforts of the government to
legislate in the area of personal health information. We have
made three previous written submissions on this subject, all
included in the material that has been handed out to you: a
letter dated August 20, 1996; a letter dated February 27, 1998;
and a most recent letter dated October 9, 2000, in response to
the Ministry of Health's consultation paper dated September
The members of the
committee might be interested to know why an organization like
ours is so concerned about the parental rights aspects of Bill
159. We were first alerted to these issues when we received a
copy of a letter issued by the Association of Sexual Health
Professionals of Ontario to its members in 1991, calling on them
to lobby the Rae government to change the bill that eventually
became the Consent to Treatment Act. The bill contained a
presumption that children under the age of 16 were "incapable"
with respect to medical treatment decisions, the implication
being that health practitioners would normally have to have the
consent of a child's parent before proceeding with a medical
treatment. The association was up in arms that this presumption
would greatly hinder the ability of abortionists and other family
planning professionals to continue to provide confidential
services to teens. Within a matter of months the bill was
radically changed. The presumption of incapacity was replaced by
a presumption of capacity at any age, and all health
practitioners were given the sole authority to determine whether
or not a child was capable with respect to a proposed
We don't think these two
events were a mere coincidence. In fact, we believe that (a) this
radical social policy change that now affects how all forms of
medical treatment are provided to children would not have come
about but for the lobbying efforts of the abortion and family
planning industries and (b) the reliance by legislators on a
supposed need to respect the confidentiality of children as a
justification for negating parental rights in legislation like
the Health Care Consent Act and Bill 159 is disingenuous. The
whole process has been akin to a group of foxes lobbying the town
council for a law prohibiting chicken farmers from putting wire
fences around their chickens on grounds that the fences unduly
restricted their freedom of association with the foxes.
Of course, the Consent to
Treatment Act became the Health Care Consent Act under the Harris
government and, despite our voice of warning, the Harris
government missed an opportunity to correct the anti-parent
aspects of the legislation. From a public policy point of view,
the legislation has been a disaster. Secret abortions and
chemical contraceptives for teen girls have not resulted in true
autonomy for children. Instead, confidentiality has been used as
a cloak to protect the family planning industry from being held
accountable for the devastating injuries these girls often suffer
and for its systemic abuse of the concept of informed consent. At
the same time, parents who later find out their daughters had
these secret abortions now have to help them pick up their
shattered lives and wonder how it came to be that the school
health nurse or their own family doctor could deceptively arrange
the abortion behind their backs and then claim this was all legal
and none of their business.
We have our own Rosa
Hartford and William Saturday cases. They just don't seem to get
reported in the Toronto Star. It is because our organization does
get wind of these tragedies that we have been moved to come
before you here today.
Bill 159 is infused with
the same extreme vision of child autonomy in medical matters that
guides the Health Care Consent Act. It is our faint hope that
someone in the Legislature will finally step forward and stop
this madness. We draw your attention to an important article, in
the appendix of our written materials, by Bruce C. Hafen and
Jonathan O. Hafen, entitled Abandoning Children to Their Rights,
originally published in First Things, August/September 1995. The
authors warn legislators against incorporating into statutes "an
autonomous view" of children's rights that is "more based on
choice than needs" of children. They conclude with the following
words: "Despite increasing autonomy rhetoric, the American legal system limits
children's autonomy in the short run in order to maximize their
development of actual autonomy in the long run. This approach
also encourages development of the personal competence needed to
produce an ongoing democratic society composed of persons capable
of autonomous and responsible action. To short-circuit this
process by legally granting, rather than actually teaching,
autonomy to children ignores the realities of education and child
development to the point of abandoning children to a mere
illusion of genuine autonomy."
Keeping the personal health
information of dependent children from their custodial parents
will only give the abortion and family planning industries
further protection from accountability. These industries seem to
know better than most people that intensive parental involvement
in the lives of their children is not good for their businesses
and, conversely, anything that frustrates that intensive
involvement is good for their business.
I now turn the balance of
our time over to Mr Cauchi.
Cauchi: In analyzing the bill, what I have tried to do
is reduce to its most basic terms what it means for parents of
dependent children. Let me use the little time I have to list the
messages the Legislature is giving to all the parents of Ontario
with Bill 159. We have developed specific recommendations on
certain provisions of the bill, and they are detailed in our
written presentation, but I will leave any discussion of them to
the question period and save my time for more general
I have identified four
basic messages this bill sends. The first message is, we as the
government can no longer trust you parents to make good decisions
for your children, and our distrust is so deep that we must, by
statute, no longer permit any parent in Ontario to decide when
their child is ready to make adult decisions about the
collection, use and disclosure of their personal health
information on their own. Instead, we will appoint a government
agent who works in our state health care system as a health
information custodian to decide whether or not your child is
capable of making the decision herself. We will let this person
make this decision (1) without your knowledge, consent and input
and without giving you an opportunity to challenge that decision
in a court of law; (2) even though he may have a conflict of
interest in the outcome of the decision, that is, he may have a
dogmatic position that no parent should know about their child's
health care or he may personally benefit from a decision not to
involve the parents in the sense that it can help insulate him
from liability for injuries he may have caused the child in his
capacity as a health practitioner; and (3) he may be a stranger
to your family and have known your child only briefly and,
therefore, not have had any reasonable basis on which to decide
that your child is capable of making her own decision.
The second message is, you
as a parent will no longer have the right to know your child's
health record. We will now decide when it is appropriate for you
to know it. If the health practitioner, who could be the same
person as the information custodian who performed the treatment
that is the subject matter of the health record, had decided your
child had the capacity to give her own consent for the treatment,
we have now decided the records of that treatment are none of
The third message is, we
will henceforth let your child have free access to her own
personal health information, regardless of your wishes. We don't
care that you may think there is some very sensitive information
in her records that you think she may be too young to handle at
this time. Again, we can't trust you to responsibly make that
decision on her behalf.
The fourth message is, if
in the rare circumstance one of our state health practitioners
does find your child is incapable with respect to a proposed
treatment, we will henceforth let you have access to her personal
health records, but only if we think you need it to make the
treatment decision or to prepare plans for her continuing care,
otherwise we will give you access to her records only if your
child says it's OK. And if she says it's OK, we will also dictate
to you the limited purposes for which you can use the
All in all, Bill 159 is an
incredible insult to the parents of Ontario.
Mrs Jeffs was quite
accurate when she spoke of the disastrous impact the Health Care
Consent Act has had on parent-child relationships and the health
of children. We predicted in our presentation in 1996 that the
presumption of capacity at any age, the legal right of the health
practitioner to rely upon it and the relief from liability
clauses would combine to give family planning practitioners
something akin to diplomatic immunity from liability for injuries
that result from their so-called treatments, and this has come to
At that time, we also
provided legislators with empirical evidence of the positive
impact on the incidence of teen pregnancy in several American
jurisdictions of parental notification and/or consent statutes
for abortion. We can now also point to a 1998 study published in
the Journal of the American Medical Association that indicates
that opposition by parents to contraception for their teenage
children is protective and effective in reducing rates of teen
pregnancy. That's a study by Michael Resnick and others, entitled
Protecting Adolescents from Harm: Findings from the National
Longitudinal Study on Adolescent Health, JAMA, September
Who knows whether Ontario's
policy of secrecy between children and parents is actually
encouraging more teenagers to engage in risky sexual behaviour,
thereby contributing to higher associated social costs? I invite
you to spend some time going through the case histories we have
included in our appendix to illustrate the fruit of such a policy
in other jurisdictions.
Consider the case of the
high school teacher from Illinois, William Saturday. He carried
on an illicit affair with a minor female student for 18 months
and during that time
got the school's own clinic to put the student on the chemical
contraceptive Depo-Provera. The school clinic, relying on its
policy of confidentiality, kept the affair and the treatment
secret from the girl's parents during the whole time.
Consider the Pennsylvania
case of Rosa Hartford. Her son, an adult, had impregnated his
girlfriend, a minor child. Unknown to the girl's parents, Rosa
took it upon herself to take the girl out of state to have an
abortion. Her parents thought she was in school. The boy was
convicted of statutory rape and Rosa was convicted of the
statutory criminal offence of interference with custodial rights.
There is no such statutory offence in Ontario.
These cases happen in
Ontario, too, but they don't receive much media attention. In my
own home region, a high school counsellor told a girl's parents
that she needed their daughter to babysit for her late into the
evening and on that ruse obtained their consent to the girl
staying overnight. In fact, the counsellor had arranged an
abortion for the girl at a Toronto abortuary the next day and
spent the prior evening helping to prepare the girl for the
The parents knew nothing of
the pregnancy and were obviously deceived by the school health
officials. I spent an afternoon speaking with these parents. They
were not pro-life. They might have even concurred with the
abortion, but you should have seen the look on their faces. Their
home, their lives had been violated by agents of their own
government. I sympathized with them, but had to tell them that
although what had happened to them was intolerable and probably
unconstitutional, it was perfectly legal under Ontario statute
The Health Care Consent Act
and Bill 159 share a fundamental constitutional flaw: they both
fail to make a simple and basic distinction between adults and
unemancipated minor children. We maintain the position we pressed
in 1996: to be constitutional, any statute dealing with important
decisions that arise during the developing years of a child's
life must recognize a prima facie parental right to make those
decisions for the child, and that right should end when the
parent's support obligations under the Family Law Act end. This
would mean an absolute outside limit of 18 years, but parental
rights could terminate after the child attains the age of 16 and
has either married or withdrawn from parental care and
Recognition of this
threshold would be consistent with the social truism that whoever
has the responsibility must have the power. It is also a
threshold of adulthood on which we believe there is wide societal
consensus. This distinction needs to apply in virtually every
area covered by this bill, including the following: (1) the
child's access to her own records; (2) the parent's access to the
child's records; (3) consent to the collection, use or disclosure
of the child's health information by parties outside of the
family; and (4) substitute decision-making in respect of all of
For the sake of those
parents who feel that their otherwise dependent children have
earned the right to autonomy in respect of health information
decisions, we would not oppose an exception whereby children over
the age of 16 who have the written authorization of their parents
would be treated the same as adult individuals under the statute,
in other words, those children possessing a written waiver of the
parents' right to veto their decisions. We would also not, of
course, oppose an exception in the case of an emergency, where
the custodial parent is not available.
Back in 1996, I took a
legislative committee through an analysis of the Supreme Court of
Canada's 1995 decision in B.R. versus the Children's Aid Society
of Metropolitan Toronto, coming to the conclusion that the bill
that became the Health Care Consent Act would not likely pass a
Charter of Rights challenge. If you review the Hansard record of
that 1996 presentation, you'll see the committee accepted the
very dubious notions put forward by the Attorney General's
lawyers that (1) everything the judges said in that case about
parental rights was obiter dicta, or mere comments in passing;
and (2) the decision could be ignored in drafting the
Since 1995, that decision,
particularly the judgment of Justice LaForest, which was highly
supportive of parental rights, has received much positive
judicial comment in subsequent cases. In addition, the court has
recognized a new source for parental rights in the charter, the
section 7 security-of-the-person right. I have detailed these
comments and the new cases in the end notes to our written
presentation. Suffice it to say that we remain more convinced
than ever that neither the Health Care Consent Act nor Bill 159
could survive a charter challenge based on parental rights.
To sum up the legal and
social principles at stake here, I don't think I could be more
eloquent or profound than Judge Luttig. In the recent case of
Planned Parenthood versus Camblos, the US fourth district Court
of Appeals upheld the constitutionality of a statute that
requires a teen girl who seeks an abortion to either give notice
of this intent to her parent or seek a court order to bypass the
parent. The judge said parents "are obliged to know, and they are
entitled to know, the life-defining decisions their children
face. To hold otherwise, we are convinced, would be to turn child
from parent and parent from child at the very moment in life when
each is most in need of the other. Such a plenary violation of
family the Constitution cannot be construed to require. Were it
so, right would be they who said that with arrogance implacable
we had our foundation rent asunder." Thank you.
Thank you both. You've timed it perfectly. That exhausts our 20
minutes, but we appreciate your taking the time to make a
presentation and specific recommendations to the committee.
Mr Chair, the presenters made reference to appendices, which I
don't see attached.
You should have a big packet that was on your desk when we came
back from lunch.
I don't appear to have it.
The clerk will bring you another copy.
Our next presentation will be from Ms Claudette Grieb. Good
afternoon and welcome to the committee. Just a reminder that you
have 10 minutes for your presentation.
Grieb: I would like to present these pictures. They are
of my dead children and I need them here with me in spirit.
I guess I should ask, Ms Grieb, if you were here earlier when I
read the notice to one of the other groups about parliamentary
This is not in any way to influence your presentation except to
point out to you that from time to time in the past we have had
individuals in particular making presentations who might not be
as familiar with this as some of the groups that appear before us
regularly. While the MPPs enjoy parliamentary privileges and
certain protections pursuant to the Legislative Assembly Act,
it's unclear whether these privileges and protections extend to
witnesses who appear before committees. For example, it may very
well be that the testimony you've given or are about to give
could be used against you in a legal proceeding. I caution you to
take this into consideration when making your comments. I just
raise that. A previous presenter actually mentioned specific
doctors, so I just wanted that to be before you.
My name is Claudette Grieb.
I am here today to speak for two people who have died as a result
of malpractice, my daughter and my granddaughter. An uncertified
therapist allowed to practise in Ontario is responsible for their
deaths. The therapist is still in practice, protected by our
existing federal and provincial laws and guidelines. Her
colleagues at the Community Justice Initiatives on Stirling
Avenue in Kitchener are also still operating, aided by government
funds, using deadly therapy-the bogus therapy of recovering
hidden memories of incest. I know, because I am in possession of
the counsellor's receipts and the group therapist recommendations
and questionnaires given to my deceased daughter. In the
questionnaires, my mentally ill and suicidal daughter repeatedly
reported that she was "hatin' and suicidal." Neither the
unqualified counsellor nor the group therapist got proper medical
care for my seriously ill daughter. Instead, the therapist kept
probing her confused mind about incest that never took place.
They insisted that this was the cause of her mental condition and
that she had to confront the perpetrators to get better.
Meanwhile, these delusions
drove her to suicide and the murder of her infant daughter, my
dear grandchild. Following suggestive therapy, my daughter came
home to me with the most horrible false accusations. She came to
believe that she had been sexually abused at the age of two. That
was the age of her own infant at the time. Memory experts, as
well as plain common sense, tell us that it is impossible to have
any reliable memories from age two. My daughter's unqualified
therapist working in an Ontario government-supported clinic did
not know that.
Instead, without contacting
us, without corroborating any of my daughter's delusions, without
checking the medical history of my daughter, this therapist
recommended that my suicidal daughter divorce herself from her
family and deny us access to our granddaughter, Dagmar. This
dangerous advice cut my daughter, and especially little Dagmar,
off from the most valuable lifeline for support-her loving
parents and our son. Instead of recommending solid medical
treatment, my mentally ill daughter was instructed to sit in a
closet with a teddy bear so she could get in touch with the
"little one inside." Meanwhile, little Dagmar was left in mortal
When we were confronted
with our daughter's bizarre recovered memories, the counsellor in
question determined that if we denied her findings then we were
in deep denial. Two weeks after the murder-suicide of my
granddaughter and daughter, I phoned the counsellor in question.
She then lied to me, saying she "had little knowledge of my
daughter." It was her turn to be in deep denial.
What are the facts? I then
confronted her with the fact that, according to the homicide
detectives, she was indeed Jackie's counsellor. She then owned up
to knowing my daughter after all. She refused to discuss my
deceased daughter with me, stating, "I cannot disclose any
information of the therapy because it is confidential."
I am the estate trustee to
my daughter, without a will. I've got all the medical notes from
all the doctors and all the clinics, and I even have the
pathology reports, the post-mortem reports. Yet I am not allowed
to have the notes of this criminal, this quack. This counsellor
had also slandered my family to the homicide detectives as well,
informing them of my daughter's beliefs acquired in therapy.
Those records are also sealed. I want all these records made
available. I am here representing my dead children. They no
longer have a voice. It is more than clear to me that our laws
and regulations are protecting the fraudulent activities of
quacks, in this case, a quack who milks the money of single
welfare moms. That's all our tax dollars, folks. I know because I
have the receipts. They're in front of you.
Moreover, our provincial
government, as well as the federal government, still funds this
unscientific and obviously dangerous type of quackery, now proven
worldwide to be destructive. It is called recovered memory
therapy. In clinics in this province one can still obtain the
out-of-date books and pamphlets from Health Canada. They were
written between 1988 and 1992 at the height of the recovered
memory fad. Yet anyone can still download them from the Web site,
advocating-still in 2001-this totally discredited therapy.
The major professional
mental health groups in Canada, the United Kingdom and the USA
have condemned this kind of suggestive trauma search therapy. No
warnings of the sort are to be found about it on our provincial and federal health
Web sites. The most blatant example of caustic material-my
daughter had it-is still approved by Health Canada. The
distributed literature is the 1988 book The Courage to Heal. This
book, according to all mainstream professionals, has caused the
destruction of thousands of innocent families. In Canada alone, I
know of over 2,000 families who were suddenly confronted by a son
or daughter after therapies convinced them, "You have the
symptoms, now find the memories."
I know, because I have met
over 100 of these parents. I am one myself. I will present to you
later a study to show that this bogus therapy is responsible for
a very serious decline in the health and functioning of those who
fall victim to it and that it has led to numerous iatrogenic
suicides. Remember that word, folks. That is death caused by the
healer. Ever since the first warning about recovered memory
therapy appeared in the Toronto Star in 1992, the provincial
government of Ontario has failed to act. By excluding Bill 155
from the contents of Bill 159, you not only remove accountability
that mental health practitioners should have to face, but the
provincial government also removes itself from being responsible
Child sexual abuse is a
very serious issue. Therapists should support their clients who
report such abuse. It is clear that government concern over this
issue has totally blinded our elected officials to the fact that
false accusations arising out of suggestive therapies do occur. A
false accusation of child abuse is also a very serious issue.
Many judges, at a meeting in Windsor some years ago, were
originally told by Ontario's former Attorney General, Marion
Boyd, "False memory syndrome is the invention of criminal
lawyers." The judges disagreed because they had seen cases based
on false recovered memories go through their courts. Meanwhile,
federal laws closed the avenue to people having access to the
records of malpractising therapists and people falsely accused
were thereby denied to make full answer and defence in these
so-called recovered-that is, false memory-cases.
There have been many cases
where judges tried to open records. The most recent is the one by
Justice Oliphant of the Manitoba Court of Appeal who said this
month: "[The complainant's] references to flashbacks, repressed
memory and recovered memory are all matters of a serious and
abiding concern on my part in terms of her credibility." He wants
to see those records made available to him. A man's liberty is at
stake. I also want to see my daughter's therapy records. I want
what my daughter's therapist said to the police made available to
me as well. I want them because they will show malpractice. I
want to know what pressures were put on my daughter to come up
with an explanation for her mental condition.
She was already bipolar,
she was already suicidal, and paranoid schizophrenia runs in the
family. There was also drug abuse in my daughter's past. What did
those drugs do to her brain? Did the therapy help her? She
answered that most dramatically. She killed her daughter and
herself by hanging. And you knew, you all knew.
The citizens of Ontario
should be warned about these suggestive practices. The Canadian
Psychological Association, the Canadian Psychiatry Association
and most forcefully the Royal College of Psychiatrists have
spoken out against these stupid practices in 1996, 1997, and the
year of my children's death, 1998. I will show you their
statements on the issue. You have them before you. Yet we are
still waiting for the federal and Ontario governments to act by
withdrawing financial support to the clinics that still engage in
this kind of quackery. We still allow unqualified and unlicensed
therapists to engage in it.
The government of Ontario
has neglected to warn the public about the following, namely that
recovered memory therapy is based on the nonsensical belief that
many people do not remember that they are victims of incest and
that suggestive therapy will make them remember. Recovered memory
therapy is the mental health equivalent to the tainted blood and
thalidomide scandals. No protectionism. My MPP, Mr Martiniuk, and
my MP, Mr Peric, have ignored my pleas for help and have engaged
in buck-passing. Today, I am here before you representing so many
of those who have no voice and I demand action. My fight will
continue, because innocent lives will have to be saved. This
matter will be also presented to the Minister of Justice.
My daughter and my
grandchild will not have died in vain.
If you would like to have
the recommendations, they are here as well.
Thank you very much, Ms Grieb. In fact, I've let you go well over
the 10 minutes. It's a very serious issue, and I'm sure I speak
on behalf of all the committee members. We feel very badly for
the circumstance you find yourself in here. We appreciate the
courage you've shown in coming forward and bringing us this
I accept your apology and I plead with you to do something before
the deaths of other mentally ill people.
If you want to call that an apology, that's fine. I thought I was
expressing commiseration, but thank you again.
Our next presenter will be Dr Richard Speers. Good afternoon.
Welcome to the committee.
Speers: Thank you very much. Mr Chairman and members of
the committee, I'd like to thank you for allowing me to speak to
you today. In the past I have served on the CSA privacy
committee's implementation committee and as the chair of the
ethics committee of the Canadian Dental Association. Today I'm
before you representing no organization whatsoever, but speaking
from my experience on these issues.
Personal health information about us constitutes
a collection of probably the most intimate details of our
existence. In order to seek relief from a condition, patients
will reveal highly sensitive details of their lives to health
care workers, with an understanding that their secrets will be
maintained. Without such a mechanism, it is well known that
patients may withhold information that may be vital to their
Although the Minister of
Health has acknowledged that "no information about the individual
is more sensitive than their personal health information," the
bill before us opts for administrative convenience and efficiency
over the human rights issues and the internationally accepted
protections awarded patients and their information. It remains to
be seen if the recommendations of Justice Krever in 1980 will
become hurdles to overcome or goals to achieve.
In looking at this bill, I
think we have to consider some of the human rights that have
already been awarded.
As a basic human right,
article 12 of the UN Declaration on Human Rights states, "No one
shall be subjected to arbitrary interference with his
We're all familiar, I
think, with sections 7 and 8 of the Canadian Charter of Rights,
which have awarded "everyone the right to liberty and security of
person" as well as protection "against unreasonable search and
seizure," which the courts are more and more interpreting as
In 1992, the Supreme Court
of Canada in the case of McInerney v MacDonald opined that
"confiding information to the physician.... gives rise to the
expectation that the patient's interest and control of the
information will continue." As well, it acknowledged that
"information revealed to a doctor.... remains, in a fundamental
sense, one's own."
Bill 159 lays the
groundwork for conducting research on identifiable patient
information without the knowledge or consent of the individual.
This mechanism is in direct conflict with the Declaration of
Helsinki, which is the international research code that governs
human experimentation. This declaration also applies to
identifiable patient information. It places a burden of consent
on the researcher and puts the interests of the individual above
that of science or society. By virtue of Bill 159 we would be
protected only by an ethics review board that would be only as
good as its membership.
If I can quote the past
Privacy Commissioner of Canada, Mr Bruce Phillips, he stated
that, "Allowing health bureaucrats and researchers to represent
the patients' interests risks putting Colonel Sanders in charge
of the chicken coop."
Secondary use of patient
information by groups such as insurers, employers and financial
institutions poses serious risks to patient care itself. I
believe that any group that routinely collects and assesses
personal health information should be captured by this act.
In passing the Medical
Checks Act of the Netherlands, the Dutch concluded that the
collection of information for secondary purposes primarily
benefited the collecting agency. I've appended that as a separate
copy. I couldn't get it to all of you. This act places burdens
and limitations on the secondary collection of health information
by these groups. As well, the Dutch have followed the Declaration
of Helsinki in drafting guidance for medical research on human
subjects and identifiable information.
Given the real protections
offered Europeans of their health information, I question whether
the bill before us would survive the scrutiny of the European
Union or the OECD. By virtue of the OECD guidelines, which will
"prohibit the sharing of personal information to states that do
not offer similar or superior privacy protection," we could be
shutting Canadian business out of world markets unless we enact a
bill that offers substantially better privacy protection.
I would encourage the
committee to recognize the pressing need for a health information
bill to be passed, but not at the expense of human rights. I
believe that an amending process can be successful, but it will
require a philosophical change. The bill is more than just
defining the mechanics of information sharing; it represents the
future of how we will interact with each other and respect our
right to personal security and self-determination.
I would suggest the
committee carefully consider amendments that would include
awarding primacy to this bill; that Bill 159 be expanded in scope
to include the standards applied to all health information
protection, including secondary use by insurers, employers and
financial institutions; recognize the threat to health care and
autonomy by unrestricted secondary use; and to impose the
Declaration of Helsinki as the minimum standard for human
experimentation in Ontario. I have appended Helsinki for everyone
here. Helsinki also claims primacy over local legislations and
We should also recognize
the right of the patient to control the disclosure of personally
identifiable information. We should recognize as well that
patients won't always make "the right choice." We should implore
the minister to develop higher standards for protecting patient
information within the bureaucracy, because at this time there's
no mechanism to separate your photograph from your health care
If anyone was to go back to
Krever and read the evidence of the venereal disease fun run, you
can appreciate the importance of that.
If we are insistent that
patients are to have no control over the direction of their
health information, we will have rendered each patient as nothing
more than an information package. We will succeed in turning each
medical encounter into a research opportunity and we may well
evolve a mechanism of conscripted care-all in the name of
Without the protections to
which I allude above, we will open the innermost secrets of the
individual to scrutiny. Surely, if the state does not belong in
the nation's bedrooms, we should not subrogate one of the most
basic human rights to the elixir of efficiency and convenience. I
thank you for listening to me.
The Chair: Thank you very much.
You've left us a couple of minutes for questions, and I'll give
the time to Ms Lankin.
Thank you, and it's nice to meet you in person. I appreciate the
comments that you raised in our earlier conversation and here
Two things: you've provided
a copy of the Medical Checks Act to the clerk, and we will all be
receiving a copy of that. Could you give us some detail about how
it differs in thrust from this bill? Secondly, the Helsinki
document which we have a copy of here, again in terms of research
and privacy, how is the balance different than what's being
Here there's a mechanism. The default is not to privacy
protection, the default is to the benefits of the community at
large, where Helsinki specifically says the patient is primary to
science and society. So right away we're defaulting backwards in
With respect to the Medical
Checks Act, they've pointed out that the sharing of your health
information for such things as insurance and employment are
hardly voluntary activities, since you need an occupation and you
probably need to borrow money to have a house to live in, so
these become less than voluntary disclosures. There are
limitations on the scope of information and how it's
What you're proposing then-this act proposes to regulate the
What you're saying is we need an act that regulates the privacy
of health information irrespective of what sector it is in.
It's how we deal with health information, because what you're
doing is taking, I guess, a hodgepodge and replacing it with a
OK. Thank you.
Sorry to be so blunt, but that was one of the motivations for
Thank you very much, Doctor, for coming before us here this
You were easier than the federal government.
No, they had more time. Thank you.
I'd argue we'd rather listen to the proponents speak than
INSTITUTE FOR CLINICAL EVALUATIVE SCIENCES
The next presentation will be the Institute for Clinical
Evaluative Sciences. Welcome to the committee.
Laupacis: Thanks very much for the opportunity to
present to you today. I believe you're receiving some material.
My name is Andreas Laupacis. I'm the CEO and president of ICES. I
was planning a PowerPoint presentation today, but the material
isn't working. In the material you have in front of you are the
slides that I am going to be speaking to.
First of all, ICES would
like to start by stressing that we believe in the importance of
the confidentiality of health information and in the need for
privacy legislation. At the same time, we believe that research
about the delivery and outcomes of health care improves the
well-being of Ontarians. In our view those two beliefs are
ICES was established in
1992 and is physically on the campus of Sunnybrook and Women's
College hospital in Toronto. Our mandate is to evaluate the
effectiveness, quality, equity and efficiency of health care in
this province. We receive arm's-length funding from the Ministry
of Health and Long-Term Care and other granting agencies, and we
work with many other stakeholders such as the Heart and Stroke
Foundation of Ontario.
I'd like to give you one
example of the kind of research that we do so you'll have a sense
of what our work is about, and this relates to bypass surgery
waiting lists. In the late 1980s, it came to attention that
people were dying on cardiac bypass surgery waiting lists and the
question was raised as to whether Ontario had enough capacity for
bypass surgery and whether high-risk individuals were being
treated quickly enough. A study was organized that attempted to
delineate the extent of the problem and to develop an urgency
rating system. Out of this study came the decision to increase
the capacity for bypass surgery in this province-the Ministry of
Health provided increased funding to do so-and a triage system
was put into place, which is still in place today and ensures
that patients who are at particularly high risk of dying while on
the bypass surgery waiting list will receive priority. Benchmarks
were established which established a maximum acceptable waiting
time for these individuals. This research led to a decrease in
the deaths on the waiting list.
The same group then looked
at the outcomes of bypass surgery in this province and developed
what we called hospital report cards, which provide for all
Ontarians information about the outcomes of bypass surgery at all
hospitals that perform bypass surgery in this province. We're
pleased that Ontario now has among the best outcomes after
cardiac bypass in the world. So I present this to you as an
example of the kind of research that really does lead to
improvement in the outcomes of patients in this province because
of the change in the way in which health care is delivered.
In terms of what we do,
what kind of data ICES holds, we hold a large amount of data that
varies from administrative through to clinical studies. By
"administrative data" we mean those data that are routinely
collected to monitor the performance of our health care system:
for example, data on admissions and discharges that are collected
by the Canadian Institute of Health Information. By "clinical
studies" we mean those studies that are collected on individual
patients or that information that's collected on individual
patients in a particular study. We collect information that
crosses that whole boundary.
We're very proud of the fact that since 1992
there have been no breaches in confidentiality related to the
data that ICES holds, and we believe this attests to the
importance in which we consider the issues of confidentiality and
First of all, we have a
number of policies and procedures in place. We have strict
employee confidentiality agreements, with dismissal being
sanctioned for breaking those agreements. We have multiple
internal privacy policies and procedures. I have to approve each
project, and we have a privacy impact assessment that's filled
out on each project, which is in the material that was handed out
to you. We have internal and external information access and
confidentiality committees. We've developed a privacy code with
the help of David Flaherty, the former privacy commissioner in
British Columbia, that's based upon federal Bill C-6 and
Willison's Principles, and we have our own privacy officer.
We also have very strict
regulations about how our data are used. Our data are used only
for research purposes. All data that we receive are anonymized by
two senior staff and replaced with a unique ICES identifier. What
we mean by that, for example, is the health care number that may
be attached to an administrative data set that is sent to us is
stripped and replaced by an ICES number that has no meaning
whatsoever in terms of identifying an individual patient.
The research that we do is
about the health care that Ontarians receive as a population, not
individually, and therefore our data and our results are always
presented in a summary fashion. We do not disclose individual
data under any circumstances. We require ethics review board
approval of all our projects involving patients or their records,
and personal information that is collected from clinical studies
is not used for other purposes without permission. Without
exception, all health data are considered to be sensitive.
We also have physical
security measures in place. We have a locked facility with
tracked coded-key access and video monitoring 24 hours a day.
I'd like to highlight the
fact that the computer upon which our data is housed is moated,
which makes it completely inaccessible from the outside. So if
someone were to hack into my computer and have access to my
network and my e-mail, that individual would still not have
access to the computer that houses the database, because it has
no physical connection with the outside world.
I'd like to address the
difficult issue of why individual consent is not always possible
in epidemiological and population-based studies, and I'd like you
to think back to the example of the cardiac bypass waiting list
that I presented to you before. Individuals who die,
unfortunately, often provide the most crucial information in an
epidemiological study. In the example that I used about
individuals dying on bypass waiting lists, if one didn't have any
information about those individuals it would be very difficult to
make changes to the way in which those patients were being
managed. Many individuals move or cannot be contacted and this
isn't a random event. It may be that individuals of lower
socio-economic status actually move more frequently and therefore
are more difficult to be contacted. We look at trends over time.
For example, the bypass waiting list study evaluated what had
happened over three to four years, and you can imagine going back
three to four years and attempting to contact individuals who had
been on the waiting list four to five years ago. This becomes a
very difficult and insurmountable task and indeed raises issues
ethically, I would submit, about contacting individuals so long
after the fact. In our view, it is very difficult, if not
impossible, to do some of these very important epidemiological
studies and obtain individual consent for all of these
Finally, I'd like to make
some specific comments about Bill 159. We're concurrently named
as a health information custodian and we would anticipate that we
would be so named in Bill 159. We support the important role of
privacy evaluation by independent research ethics boards that is
outlined in the bill. We would, however, suggest that projects
that are approved by research ethics boards should not be
disclosed directly to the minister or others. That would be one
exception we would take to the bill as currently written.
In summary, our key
messages are: the research that ICES does is important. Without
it, the health of Ontarians would suffer. Good research requires
good information. We take data privacy and confidentiality
extremely seriously and we are always re-evaluating our policies.
Now we'd be delighted to answer any questions that you have.
The Acting Chair
(Mr Joseph Spina): We have 12 minutes. That's about four
minutes per caucus. I think we begin with government members.
Mr Wood: I
gather some of your research could be done with consent in the
sense you could get a representative sample and simply use that
to do your research. Would that be correct? You don't have to
have the whole universe to do all your research, I wouldn't
Laupacis: For some studies, yes, to have a
representative sample would be sufficient. In other studies-I
would submit the example of bypass surgery-one would want to have
all individuals who were treated at all hospitals in the province
because we have no sense whether practice and outcomes would vary
from hospital to hospital. In that example, I think you'd need
information from all individuals treated at all hospitals.
You would agree that you should not have access to information
without consent where you could do it by way of seeking consent
from a representative sample?
The question of who decides, in other words, the ethics
committee, would you have a problem if, say, the Information and
Privacy Commissioner would have the ultimate signoff on that?
Dr Laupacis: To be honest with
you, I don't know an enormous amount about the Information and
Privacy Commissioner, but-
This is an officer of the Legislature. Her appointment's
confirmed by all the members of the Legislature.
Laupacis: I think there would be real issues around the
ability of one office to handle the potentially thousands of
studies that would be done not only by ICES but by other groups.
My view-and I've certainly interacted with research ethics boards
in Ottawa, Toronto and Western-is that those groups represent
society and do an excellent job in reviewing the proposals. Dr
Williams, who's a former CEO, may want to comment.
Williams: The research agreement under which we
presently operate for access to the administrative data was
struck in 1997. That was done so that it was in accord with the
framework and principles set forth in the discussion paper at
that time, which was a prelude to the current legislation. That
agreement was in fact reviewed and approved by the privacy
commissioner of Ontario.
Would you have a problem if that went into the legislation? In
other words, she would set the policy. Obviously, as you rightly
point out, there would have to be delegation of the work.
Laupacis: My response to that would be if we could get
timely access and turnaround in her response, as we do with
ethics committees, on a monthly basis.
One issue we have to consider here is whether or not we want to
pass a law that's substantially similar to the federal law. Do
you have problems with the federal law?
Laupacis: I'm not a lawyer. I just wanted to present to
you how we handle data at ICES and the kind of research we do. To
be honest with you, I wouldn't want to comment upon the federal
law from a legal point of view.
McLeod: Can I assume that a limited lockbox provision,
where a patient could indicate on their record that they didn't
want information shared, parts of their record shared-how would
that limit the work you do now?
Laupacis: I guess it would depend on how many
individuals indicated they did not want to have their information
looked at. If those individuals selected themselves randomly, if
it was a random process, I don't think it would make a huge
difference. On the other hand, if it was random it would
obviously potentially bias the results of the information that
we're looking at. That would be my response. Jack, any
McLeod: If it were a significant take-up in terms of
people blocking access to records, would you be able to function
with anonymized information if the health care custodian was the
provider? You say you anonymize all of your information anyway.
Could you use data from the health care custodian that was
already anonymous data?
Laupacis: Our data is anonymized but we are able to link
different records within the same person. I would have a
particular ICES number in our computer now and one could link the
information about my admission with my visits to a physician, so
it would be important to be able to link records in an anonymized
fashion. I don't know enough about the lockbox as to whether
you'd be able to do that or not.
Pupatello: Just a quick question. Given all of the
information we saw, it seems that you do very well without Bill
159. You do quite well. You anonymize where you have to. You have
access where you have to. My question is fairly general. You're
doing very well on your own in the absence of this law. Why do
you need it?
Laupacis: We're really responding to the law. I would
agree with you. I think long before a lot of individuals or
groups were looking at privacy this carefully, we have done
Pupatello: Is that because you're not mandated to do
this, you've taken it upon yourself to do so, and because of the
group currently running ICES you've done this well, but you ought
to be governed under law to do this?
Laupacis: No. There are clear agreements that we have
with the Ministry of Health about how we utilize our data. I've
only been the CEO for five months. Jack was the previous CEO so
he might want to comment about the details of those
Williams: Again, I would emphasize that we spent about
six months working with the legal branch of the ministry, with
the privacy commissioner and other interested parties because all
parties wanted to make sure that we had it right. This was being
done at the time of the 1996-97 discussion papers, anticipating
the bill, which finally came before the House in December. We
were working with the ministry to figure out how it might be,
should such legislation be in place.
Pupatello: But did your work change dramatically
post-1997 or post these consultations? Had you been collecting
and analyzing in a whole different manner and after these
consultations you changed dramatically how ICES does its business
Williams: Basically, yes. Before, we worked on a
project-by-project basis. The research agreements that we reached
allowed for general use of data.
Pupatello: Allowed for general use of data by whom?
Williams: By ICES as a research organization. We became
essentially a designated health information custodian.
I want to follow up on that because earlier, Dr Williams, you
indicated to us that there was a need for ethical review
committees in universities and in teaching hospitals to tighten
up their procedures. It sounds like you've just said that in 1997
or so, when the memorandum of understanding was negotiated, ICES
in fact tightened up its procedures as well. In a sense, that
probably does speak to the need to have some legislation and
perhaps some provincial guideline that's established among the various parties with
public input as to what are appropriate standards and a way of
monitoring the mechanism in the legislation which allows for
ethical review committees to be designated. Against what
standards should they be judged would be my question.
Williams: This is a very important question. As I
indicated earlier, we're trying to resolve this problem at the
University of Toronto. That still leaves open the issue as to
what would happen with respect to other research ethics boards.
Again it becomes an important issue as we're now seeing private
research ethics boards coming into play in terms of review of
research projects of various kinds.
That leads me personally to assume that we actually need to have
something more in terms of the framework inside the legislation
than what is currently here.
In the example that you
gave us, looking at the cardiac bypass registry and some of the
other excellent work that ICES has done, I still want someone to
explain to me why you need the actual identification and consent
for following someone through in the cardiac bypass registry. If
someone goes on the registry, surely they're going to offer that,
"Yes, you can use this information because it's going to help
make the system better if I need another bypass down the road."
Why would you have to go back to get information four or five
years later, like you said, and why couldn't that be covered off
in the initial consent when someone goes on to the registry?
Laupacis: A couple of comments. With the registries that
we at ICES ourselves are developing, and we're developing one now
for patients who have stroke, as part of the registry we are
requesting consent to link with the administrative databases.
Obviously, if individuals deny that consent, that won't happen.
So I think there's been a change over the last eight to nine
years in the way this has been thought about.
If one would like to know,
and I submit that most people in Ontario would, whether the
quality of bypass surgery in each of the institutions that
perform that procedure in this province is similar, one would
want to have information on all of the individuals who are
operated on in that institution. The way we could do that at ICES
is to take the CIHI data, which would identify individuals who
have had bypass surgery, and link that with the vital statistics
data which would identify those individuals who died, for
example. We could therefore tell Ontarians the quality of care,
if you will, in all those institutions.
We're not identifying any
individual patients whatsoever, and that information is not being
used to effect the care of those individual people, but it does
provide us with reliable information about the outcomes in those
centres, which I think is important. As one has more and more
missing information one is always worried that the reasons that
information is now missing may be non-random. We know that
outcomes are affected by some of those non-random things.
Chair: Thank you, Dr Laupacis and Dr Williams. We
appreciate your time today and your presentation.
BAYCREST CENTRE FOR GERIATRIC CARE
Chair: Our next group is the Baycrest Centre for
Geriatric Care. I believe they are here. Please state your name
for the purposes of Hansard and familiarity of the committee
Yacht: Good morning. My name is Gwen Yacht and, as the
director of health records and quality management for Baycrest
Centre for Geriatric Care in Toronto, I'd like to thank you for
allowing us to present.
By way of introduction,
Baycrest Centre is an academic centre affiliated with the
University of Toronto. We operate a charitable home for the aged,
a hospital providing complex continuing care, rehabilitation and
geriatric psychiatry services, and a seniors' residence, which
taken together constitute over 1,000 beds. Baycrest also operates
an adult daycare centre for seniors, a senior persons' community
centre and a host of other community programs for the elderly. In
total, we serve over 5,000 seniors every day. In addition,
Baycrest is home to both a pure and applied research centre
focusing on aging. Our Rotman Research Institute is one of the
top five neuroscience research centres in the world and is on the
threshold of major advances in the care and treatment of
We are a very large
organization that currently operates the vast majority of
services on one campus. To facilitate the continuum of care that
we provide, we have one centralized health records department. In
this presentation I will first discuss why Baycrest finds this
legislation commendable. I will then discuss the provisions which
we believe would be improved by amendment. These concern
research; fundraising; one custodian operating more than one
facility, program or service; and penalties.
First, in praise of Bill
159. We would like to congratulate the government on a bill well
done. For years we have struggled with deciphering our
obligations under the Public Hospitals Act and case law
concerning the transfer of health information.
We appreciate the broad
scope of the new legislation. We applaud the delicate balance it
strikes between a person's right to privacy and a health care
provider's ability to access health information that it requires
to serve the person's needs.
Specifically, we support
the removal of the so-called lockbox provision which had been
included under the 1997 government consultation document. Under
the new bill, a person will not be able to cut off a health care
provider's access to the very information they require to provide
appropriate health care to a person in need.
We support the power of
clients to control if and when their personal health information
may be disclosed for a non-health-related purpose.
We support the new provisions that recognize the
crucial importance of quality-of-care information and research to
improve health care while at the same time providing a meaningful
process to guard against unnecessary and improper disclosure of
personal health information.
Regarding research, we
fully support the recommendations for the amendment made by the
Toronto Academic Health Science Council, of which Baycrest is a
member. We refer you to their brief. We think the provisions
concerning research strike an appropriate balance by ensuring a
flexible and thoughtful review process for research projects
using personal health information.
One concern, however, is
the need for the entire research ethics review body, which in
most centres meets monthly, to review projects that involve no
patient contact, provide no risk to patients and have adequate
safeguards to protect confidentiality. Another concern is the
ability of a research ethics review body to complete a timely
review of such projects. Often, academic research conducted by
students, for example, has short deadlines. Having to wait for a
meeting and approval of the ethics review body committee could
have the effect of discouraging this type of critical
We suggest that a research
ethics review body should be able to appoint a subcommittee. The
subcommittee should have the power to review and make
recommendations to the research ethics board on chart review
Fundraising: As you know,
subsections 26(2) and (3) enable a custodian to disclose the name
and address of the patient without consent for the purpose of
fundraising. This exception for fundraising is most welcome. We
applaud the government's recognition that health care facilities
rely heavily on the financial support of the community and
require a practical way to access that support. We agree that a
person should have the right to request that they not be
solicited for funds, and we respect these requests. But Baycrest
faces a unique but important problem: most of our support comes
from the families of our clients, not the clients themselves. We
are a geriatric institution. Many of our clients do not have the
capacity to provide the consent to enable us to contact family
members for their support. Obtaining consent from our current
clients or their substitute decision-makers will take time and
As you know, fundraising is
more important now than ever for long-term-care organizations
because of the reduction in funding, and for organizations such
as Baycrest, we must also raise dollars to help us provide
culturally sensitive care. Given our elderly clientele and our
reliance on funding from family members, we feel our foundation
should be able to continue using names and addresses of family
members of clients presently served by Baycrest without express
consent in order to raise the needed funds.
We suggest the following
amendment. As a minimum, we are asking for grandparenting
provisions that will enable health facilities to continue using
the names and addresses of family members currently on their
donor lists. This would oblige us to seek consent from new
clients or their substitutes to use family names and their
Regarding one custodian
operating more than one facility, program or service, subsection
3(1) provides that one custodian operating more than one
facility, program or service shall be deemed to be a separate
custodian with respect to each facility, program or service. This
provision makes sense for a licensee of several nursing homes,
for example, who may operate at arm's length several facilities
on different sites. However, we suspect that several health
organizations, such as hospitals, coordinate related facilities
or programs on one campus or perhaps on a few sites. In this
context, we believe that application of the provision will not
help to facilitate services nor protect privacy.
We at Baycrest are proud of
the important continuum of care we provide for those in the later
stages of life. Separating out the administrative
responsibilities for personal health records according to each
facility, program or service we operate, despite the fact it is
on one campus, would create expensive and time-consuming demands.
It would also function to increase gaps in information at
critical junctures compared to our present communication
standard. We are relieved to see that an exemption can be made in
regulations and we will rely on the government to make exemptions
for organizations such as ours.
protection of the privacy of personal health information is
crucial and the offence provision correctly targets those who
willfully disregard or abuse it. We are pleased to note that a
health care custodian, its employees, officers and directors are
protected for acts or omissions done in good faith. That being
said, we feel that volunteers who help us provide services and
who sit on our board of directors may hesitate to do so in view
of severe penalties in legislation. As a charitable organization,
we simply could not exist without our volunteers.
We find the penalties for
an offence in Bill 159 unduly high and inconsistent with other
health care legislation and with information statutes such as the
municipal and provincial freedom of information and protection of
privacy acts. Even the federal Personal Information Protection
and Electronic Documents Act has lower penalties.
We suggest the following
amendment to subsection 73(3):
"A person who is guilty of
an offence under subsection (1) is liable, on conviction,
"(a) if the person is an
individual, to a fine of not more than $10,000; and
"(b) if the person is not
an individual, to a fine of not more than $100,000."
Thank you very much.
Chair: Thank you, Ms Yacht. That leaves us about 10
minutes, or roughly three minutes per caucus.
Mrs McLeod: I note that you're
supportive of the removal of the lockbox provision that was
originally suggested, but I don't have a real sense of how that
lockbox provision, which would be somebody saying they didn't
want their health information revealed, for whatever reason,
could actually interfere with your ability to provide care,
certainly in a majority of situations.
We felt it was cumbersome. Also, we estimate that 80% of the
clients we serve, both in residential and community services,
have some degree of cognitive impairment. A lot of work goes into
communicating with our clients. If at some stage they have placed
information in a lockbox and the information is critically
necessary for their ongoing care, we feel it may be very
difficult to access it in a timely fashion.
McLeod: You don't think the provisions around competence
to make decisions would enable you to access the information,
that they provide enough freedom to access the information with
substitute decision-maker agreements, for example?
With our population, change is ongoing. So when the information
is placed in the lockbox all of the controls may be appropriate,
and within a fairly short time the change may make it difficult
to access the information.
McLeod: You indicated that you were in support of the
recommendations that were presented to us earlier by the Toronto
Academic Health Science Council. One of those that we didn't have
an opportunity to ask about was opposition to disclosure directed
by the minister. I don't know if you feel you would be in a
position to comment on the concerns about directed
I'm afraid I'm not in a position to comment at this time.
McLeod: Fair enough; I just hadn't had a chance to ask
Let me ask you about the
fundraising issue. One of the concerns that was raised with me
earlier was that the timing of the notification to somebody that
their name could be used for fundraising purposes was a real
issue. Is that something you think needs to be clarified in the
We do feel it is an issue that when we first come into contact
with a client they are probably at their most vulnerable. It
would be easy for them to feel pressured into giving consent. We
don't want to put them in that position. Yes, it is an issue.
McLeod: Something preferable might be to have written
notification of that go out at some subsequent time? I think
there's a real sensitivity too in terms of what should be the
priority in contact with the individual.
Our other concern is that we currently have 1,000 people in
residential care at Baycrest and we see a lot more than that,
roughly 5,000 a day.
Our concern is that the
names we currently have on our donor list not be lost. We are
certainly prepared to follow the directions of the government on
a regulation, but we would like permission to be exempted and
allowed to use those names as long as the clients are still
working with us.
I might have missed something in the legislation. Is there a
retroactive provision with respect to fundraising lists that
foundations have? I'm not aware of that.
The legislation requires consent from all of our clients. It
doesn't give us permission to use existing lists. It requires
that there be a consent for everyone, which would mean that we'd
have to go back.
But a foundation not covered by this legislation which currently
has a list, you're saying that list becomes null and void as a
result of this legislation?
That's what it appears to us. I guess we need it clarified at the
That's helpful. I also wanted to ask about your opposition to the
lockbox provision and set out for you what the federal Privacy
Commissioner told us in very direct terms. Health information is
private information. We, as individuals, own it. We have control
over what anyone knows or doesn't know, irrespective of whether
that information may be helpful to our long-term health care
treatment decisions or recommendations from health care
professionals. For the health care profession, the various
aspects of it, the service providers, to say, "We need access and
we need to determine what's relevant to the treatment decision we
are making," is incredibly paternalistic.
I understand also that
you're dealing with a particular segment of society, a large
portion of whom have cognitive impairments and therefore may not
be capable of making treatment decisions and/or decisions about
unlocking a lockbox. But backing it up in the system, if I, at my
age, made a decision about some information that I did not want
shared, you're saying that from the health care professions'
perspective, that's inappropriate? Or is there a mechanism that
needs to be put in place, when a person reaches the point of no
longer being capable of signing a power of attorney for personal
care papers, assigning responsibility to a substitute
decision-maker, that there's a specific section which clarifies
what their intent is, then and into the future, with respect to
that information, even if withholding that information means that
a certain aspect of health care treatment might not be provided
I think we would agree with the mechanism. I don't think we agree
with the lockbox because it didn't seem to have the same level of
flexibility for the type of clients that we work with.
So if the legislation somehow corresponded with substitute
decisions, consent to treatment, capacity and decision-making,
and indicated that, either when you are doing a living will or
when you're doing a power of attorney for personal care or when
you're being challenged around your capacity, there's a mechanism
for that issue to be reviewed, either prior wishes determined by
the individual or as there is now-if you have prior wishes in
place and somehow or other there's a question of whether that is
the right thing to do, the substitute decision-maker can go through
consent and capacity and get a different ruling. Aren't those
protections sufficient enough?
Yes, we think those are.
So we could then have a lockbox if it was linked to all of those
I guess we'd need to see it. As stated in the previous draft
legislation, we found it not an easily workable solution.
Molinari: Thank you very much for your presentation. I
represent the riding of Thornhill, so my constituents are quite
pleased with the work at Baycrest. Also, recently the government
announced 200 additional long-term-care beds, so a number of
constituents from Thornhill are quite pleased.
I guess we should thank you, too.
Molinari: You're more than welcome. Just some questions.
I understand the cultural sensitivity of Baycrest and some of the
fundraising you do that allows you to enhance the services you
provide. Your suggestions and amendments with respect to the
donor list-if you already have a donor list which is separate
from your clients and clients' families, this legislation would
not allow you to use that donor list?
The legislation requires interpretation. The regulations have not
yet been built, that we know of. I guess we felt strongly that we
should be able to use the donor list. Because that wasn't clear
in the legislation, we felt that should be clarified for us.
Molinari: So this is something that you're suggesting be
clarified in the regulations.
Either that or that we be granted that exemption to be able to
use the existing list.
Molinari: Regarding the comments you made with respect
to penalties and your suggested amendments, in reading the act,
under offences, "A person is guilty of an offence if the person,"
and it goes on, (a), (b), (c), and in all cases it says
"knowingly contravenes" or does something knowingly.
Your concern is about
having volunteers being more cautious about whether or not
they're going to volunteer because of the penalties. I think
you're suggesting $10,000 where the legislation has $50,000, and
you're suggesting $100,000 where the legislation has
Do you think that's a
really crucial part of the legislation? When I read it, it says
"knowingly." So if a volunteer knowingly does that, does it make
a difference how much the penalty is?
It was felt that the penalties should be more in line with other
legislation. This is far in excess of any other existing
legislation with respect to privacy that affects Canadians and
Thank you very much for coming before us today.
REGISTERED PRACTICAL NURSES ASSOCIATION OF
Our next presentation will be from the Registered Practical
Nurses Association of Ontario. Good afternoon and welcome to the
Ms Joanne Young
Evans: Good afternoon. My name is Joanne Young Evans and
I am the executive director of the Registered Practical Nurses
Association of Ontario.
The RPNAO has represented
registered practical nurses, RPNs, since 1958. Today we represent
approximately 5,000 RPNs across Ontario who are proud members of
the nursing team. Our members work primarily in hospital
settings, but they can also be found in long-term-care
facilities, community health facilities, physicians' offices and
in corporations and educational institutions. Needless to say,
our members are accustomed to working in a multi-professional
We support the principles
behind Bill 159 but we must stress our areas of concern about the
bill and its implementation. RPNs are already becoming
increasingly reliant upon electronically stored and transmitted
data. Based on experience, our reservations are focused on the
need to find the right balance between access and privacy.
Bill 159 unnecessarily
expands the instances in which personal health information may be
disclosed without the person's consent. For example, subsection
26(3) permits a health information custodian to "use or disclose
the individual's name and address for the purpose of fundraising
activities" without the patient's consent. Section 27 also
outlines other instances in which health information custodians
may provide patient information without patient consent.
Some of these instances
are: to the government for the purposes of "planning or
delivering programs or services of the custodian, allocating
resources to any of them, evaluating or monitoring any of them or
detecting, monitoring or preventing fraud related to any of them"
or for a research project or program.
We are also concerned that
the definition of "health information custodian" in section 2 is
too broad. A health information custodian, according to the bill,
can be a district health council, Cancer Care Ontario, the
Minister of Health and Long-Term Care or a researcher, among
What the government appears
to have done is to create a Pandora's box and then distributed
numerous duplicable keys. We believe that health information
should be disclosed for purposes relating directly and
exclusively to health care, with only very limited
The provisions of the bill,
as written, have the potential to violate the necessary
confidentiality of patient-provider relationships and patient
privacy. We recommend that informed patient consent be required
in all cases.
This leads me to our second
concern: adherence to the principle of mandatory informed consent
to protect patient privacy and confidentiality. The RPNAO holds
information should not be distributed unless authorized by the
patient, and that those who receive such information must take
all reasonable measures to safeguard it effectively. As George
Radwanski, federal Privacy Commissioner, said to this committee
two weeks ago, "There is no control without the right of consent,
and there is no privacy without control. It follows that the
requirement for consent must be at the heart of any good privacy
The bill has too many
potential loopholes that weaken privacy defences. Access and
consent have to be married and be equal partners in every request
for sharing the patient health information. We recommend
standardized access request forms and procedures that include
inherent audit trails. To proceed with this legislation without
closing the loopholes and securing rights and protocols to access
is to court disaster. Look at how loosely defined the sections
dealing with access for research purposes are outlined in clauses
27(e) and 27(i). In our view, the legislation should explicitly
state that identifying health information may not be disclosed if
anonymous information is equally available. If personally
identifiable information is legitimately required, the proposed
research ethics body should arbitrate the request for
Achieving a better balance
between ensuring patient privacy and the additional burden
imposed on the custodian is our third concern. The bill
stipulates that, "A health information custodian shall designate
an individual or individuals who are employed by or in the
service of the custodian to, (a) facilitate the custodian's
compliance with this act; (b) ensure that all persons who are
employed by or in the service of the custodian are appropriately
informed of their duties under this act while employed by or in
the service of the custodian; (c) respond to inquiries from the
public about the custodian's information practices; and (d)
receive complaints from the public about the custodian's alleged
contravention of this act or the regulations."
RPNs already follow
stringent health record maintenance and storage policies and
procedures. In small practices, each employee or contractor is
required to sign a confidentiality agreement. If the agreement is
contravened, it constitutes grounds for immediate dismissal.
Furthermore, access to health records by multiple providers is
often necessary. Requiring that the custodian appoint one
individual to oversee records management is therefore
Further, although it is
outside the legislated scope of Bill 159, we suggest that the
government help to encourage the use of electronic charting to
record all disclosures. We believe that electronic charting could
ensure consistency and avoid duplication across professions,
especially within multidisciplinary health care teams involved in
patient care. The multidisciplinary team could use one form, and
each professional could add to it when necessary. In addition,
with electronic charting one can obtain information such as how
often the personal chart is accessed and by whom; each provider
is given a PIN number. We believe this method of recording client
information is not only safe but also expedites the delivery of
Our fourth and final
concern lies with controlling third party access. As I already
mentioned, our members believe that personally identifiable
information should not be used if suitable anonymous information
is equally available. Best efforts should be made to ensure that
patient confidentiality is assured at all times. A research
ethics review body, proposed in the bill to review requests for
research related projects and programs only-subsection 32(3)-is a
too-little, too-late control mechanism. For example, the review
body will not be empowered to review requests for personally
identifiable information made by other parties, such as the
Ministry of Health and Long-Term Care, Cancer Care Ontario and
public hospitals for fundraising purposes.
Again, when the bill
addresses the issue of electronic data transfers, it fails to
give section 13, which states, "A health information custodian
shall comply with the requirements prescribed by the regulations
with respect to the electronic transfer of personal health
information," any teeth. Something should be inserted to ensure
mandatory encryption, complete with a public key that serves to
track and restrict access.
Records can often be linked
or identified through a combination of non-unique identifiers
such as birthdate, birthplace, mother's first name. We
acknowledge that additional work is required to distinguish
between identifiable and non-identifiable health data. In the
meantime, protection can be provided by releasing data with
common identifiers that have been changed in a way that does not
affect the application of the data to the user. If unique
identifiers are required, then they should be categorized clearly
by health condition, rather than individual identifiers.
The RPNAO supports the
stated goals of Bill 159. Patient care and protection of privacy
are a major preoccupation for health care practitioners.
Unfortunately, we believe this bill increases third party access
to identifiable patient information, thereby putting patients'
privacy at risk.
We appreciate the
opportunity to outline our concerns regarding Bill 159 and look
forward to continuing to work collaboratively with this committee
and with the Ministry of Health and Long-Term Care on
implementation of the bill once it is amended. Thank you for your
Thank you very much. That leaves us just over three minutes per
caucus for questioning. This time we'll start with the NDP.
You make a very strong case for increased privacy protection. One
of the issues that's not on the table in this bill but was in the
previous draft is that of the lockbox. You've heard us speak of
that to some of the earlier presenters. Does your organization
have a position with respect to the inclusion of a lockbox
provision in this legislation?
Ms Young Evans: Not at this
time. Our board and our membership have concentrated more on the
issue of electronic charting, because we think that is actually
one of the key answers to all of this, even though the bill
doesn't identify it. We think that that's a better solution.
Perhaps you could give us a little more information about what
you mean by that. As I listened to your presentation, I got the
sense that each health care provider who needs to have access to
get information has a PIN number, can get in there and has to
record what they've seen, or it's electronically done. So we have
a record of what's been disclosed to whom. Maybe you could
elaborate on that. But also tell me, how does that address the
issue of myself as a patient perhaps having information that I do
not want shared, irrespective of whether that affects my future
health care or not?
Evans: With regard to electronic charting, one of the
reasons we support that is we may have practitioners who go in
just to look at the information. If there's nothing to report,
going in just to look at the information, then it begins to show;
there's a pattern that people are beginning to look for
information and access records where it's not necessary to do so.
OK? I'm not answering your question, am I?
No. That's OK. Is there anything else with respect to electronic
charting that you think would protect people, the actual privacy
of the information that's there?
Evans: What it does is tell us who's having access, when
they're having access. I think one of the things that the
association also supports is the whole issue of identifying
perhaps by illness, rather than by either their health card
number or SIN number, whatever. Let's say it's breast cancer. So
we have BC and then perhaps the mother's birthdate or something,
and therefore it's extremely anonymous and it's done by the
health issue, rather than by the patient. You're still going to
achieve what you're looking for as far as finding out those
In terms of research.
Evans: In terms of research.
Have you had an opportunity to review the federal act at all,
Mr Wood: I
was going to ask you whether or not you would be satisfied with
an act of that nature. You might want to take a look at it at
your convenience and let us know your thoughts, what you like and
don't like about the federal act.
Evans: Thank you. Actually, what I'd like to do is to be
able to pass on our national counterpart. The Canadian Practical
Nurses Association has actually submitted their response on the
federal legislation. I will pass that on to the committee, if it
is so desired.
Certainly from my point of view that would be very helpful. I
thought the rest of your presentation was very clear. Those are
all the questions that I had, and I think that completes the
questioning from the government side.
McLeod: Following up on your discussion with Ms Lankin,
can you think of situations in which it might be necessary to
have identifiable information for research purposes, something
more broadly identifiable, more specifically identified than
Evans: You mean as far as the patient is concerned?
Evans: I think the concern that we have is that as soon
as you identify by patient, then there are ways of that
information getting out. If it's done by health issue, it's going
to take a very unique individual, someone with congestive heart
failure, urinary problems, dialysis-whatever. If they have a
number of identifiable health issues, then you're obviously going
to be able to pick that person out of the system without any
difficulty, but those people are obviously a minority.
In looking at an individual
patient, we can't really see where you're going to need to have
any information on one specific person. Our association is
already getting complaints. Cancer Care Ontario is one example
where they actually called up a woman who had breast cancer and
knew her name, knew exactly what happened, treatment, and were
calling her regarding research purposes without her consent that
the information even be released.
McLeod: That's interesting. I was going to ask you what
kinds of concerns your members have been encountering in terms of
privacy and that's a good example of it.
You seem to suggest that
you would be more comfortable with the privacy protection of an
electronic record. Is that a fair read from your brief?
McLeod: Do you not have concerns about the ability of
people to access electronic records in ways that are still
mysterious to me but that seem to happen on a frequent enough
basis that they've become the stuff of legend already?
Evans: Where there's a will, there's a way. I could
relate horror stories back to you, stories that we've had where
you've got clerical staff who are filing boxes of patient
information and having a good old chin wag and a coffee down in
the basement and reading them as they file them away.
So again, when it comes to
electronic charting, you can see at least it eliminates that kind
of very easy access to patient records. At least you know who is
accessing it and when and what is the particular reason that
you're accessing it. If the patient is not up at 3 o'clock in the
morning, why did you go into their file? There was no need for
McLeod: Do you think Bill 159, as drafted, would protect
against that kind of example, because the people handling those
files, say, in a hospital setting, would be bound by the same
rules around disclosure as the health care custodian who is the
Evans: But they already are, really.
McLeod: And it still happens.
Ms Young Evans: It still
happens. As soon as you work in a health care setting, whether it
be a hospital, a long-term-care facility or out in the community,
patient information is confidential.
McLeod: That's one of the things we're struggling with,
because we've had a number of the colleges come forward and talk
to us about the inconsistency between this legislation and their
own. Of course, they already have codes for handling, but when it
happens, it happens, and the penalties under the HPRAC
legislation don't seem to be more or less effective than the
penalties under this may be.
Evans: But you also have to find them, I guess, abusing
the confidentiality codes as well. The one issue I indicated to
you, it was only because one of the staff walked downstairs
because she wanted to look up a file. She made some comment
about, "Oh, having a good time reading?" "Oh, no, we're filing,"
and quickly everything was hustled and they started putting
things away. But that obviously was a common practice in that
Thank you very much for coming before us here this afternoon. We
appreciate your presentation.
Recognizing that we have a
cancellation for the next spot, Ms Lankin has asked if the
committee could take a 10-minute recess. Seeing no opposition to
that, the committee stands recessed for 10 minutes.
The committee recessed
from 1608 to 1621.
FEDERATION OF HEALTH REGULATORY COLLEGES OF
I'll call the committee back to order.
We'll proceed with our next
deputation, from the Federation of Health Regulatory Colleges of
Ontario. Good afternoon, gentlemen. Welcome to the committee. We
have 20 minutes for you to divide as you see fit between either
presentation or question-and-answer period.
Wojcicky: Good afternoon, Mr Chair and members of the
standing committee. My name is Jaro Wojcicky and I'm the
president of the Federation of Health Regulatory Colleges of
The federation is composed
of 21 regulatory colleges that govern Ontario's health
professions. Almost 200,000 health practitioners are regulated by
these colleges. The colleges are not educational institutions.
They are regulatory agencies created under the Regulated Health
I'm also the registrar for
the College of Denturists. With me today are Rod Hamilton,
director of policy and communications from the College of
Physiotherapists of Ontario, and Richard Steinecke, legal
counsel, who will attempt to answer any legal or technical
questions you may have. Also in the audience are a number of the
regulatory colleges representatives with us today.
The federation is pleased
to have this opportunity to make a presentation to the standing
committee on this very important bill. We have three primary
submissions that we wish to make to you today.
(1) Colleges are not
suitable health information custodians.
(2) The bill's protections
for quality assurance information should also apply to the
colleges' quality assurance programs.
(3) The consent provisions
for youth under 16 years of age should be reconsidered.
Colleges are not suitable
health information custodians. The federation is extremely
concerned that the bill characterizes health colleges as personal
health custodians. This concern is based upon two main
considerations. First, appropriate access and use protections for
patient health information already exist in the Regulated Health
Professions Act, our governing statute. However, many of the
provisions in the bill are given priority over the Regulated
Health Professions Act.
The federation is concerned
that unless the Regulated Health Professions Act provisions have
priority over the bill, the colleges' ability to act in the
public interest will be diminished. The colleges' statutory
obligation to regulate their members in the public interest
requires that access and use of patient health information be
governed by statutory provisions specifically devised for this
Second, the application of
the bill's provisions on the colleges would be inconsistent with
policy decisions that have already been made in the bill. The
bill makes special provisions to ensure that most non-police
agencies can obtain and use health information in investigations
and proceedings and for quality-of-care purposes. Thus it is
apparent that unintended barriers to such use by colleges under
the Regulated Health Professions Act are not intended.
Let me give you an example.
A group practice realizes within weeks that a new colleague they
have hired from another province, Mr Green, is grossly
incompetent. They fire Mr Green. Mr Green's lawyer threatens
legal action. A deal is negotiated that Mr Green will leave
quietly so long as an innocuous letter of reference is provided
by the group and so long as no mandatory report is made to Mr
Green's college under the Regulated Health Professions Act. The
group's lawyer advises that since the college is covered by the
bill, the mandatory reporting requirements are now discretionary
by virtue of subsection 11(2) and clause 36(1)(b) of the bill. No
mandatory report is made. Mr Green goes on to solo practice where
he injures a number of patients before the college learns about
him. This example illustrates why colleges should not be treated
as custodians in the same way that health practitioners are.
The bill's protections for
quality assurance information should apply to the colleges'
quality assurance programs. The federation commends the
government for recognizing the need to provide protections for
information used in improving the quality of health care. We
believe these provisions will assist the organizations covered by
them to develop and expand programs that will improve the quality
of health care provided in Ontario. However, these protections do
not apply to colleges.
The federation would like clarification as to why the colleges'
quality improvement programs have not been provided with the same
protection. In order to gain members' candid participation in the
colleges' quality-of-care programs, their quality assurance
information must be provided with the same protections.
Let me give you another
example. A practitioner completes a self-evaluation portfolio
identifying a problem she has had with a particular patient. The
practitioner candidly records the deficiencies in her skills that
resulted in the problem and develops a plan for ensuring that a
similar problem does not occur in the future. The college then
requires the practitioner to submit the portfolio to the quality
assurance committee for review. The committee commends the
practitioner for her candidness and for her plan and suggests
some additional measures that may assist her in this area. The
original patient sues the practitioner for damages and requests
that the court order the college to produce a copy of the
portfolio for pre-trial discovery purposes. The college resists
the request based on the damage it would do to the quality
assurance process. The patient argues that the existing
provisions under the Regulated Health Professions Act do not
expressly protect these documents from production and therefore
they ought to be produced.
Our suggested amendment is
that section 40 of the bill should be amended so that colleges'
quality assurance committees are included in the definition of
The consent provisions for
youth under 16 years of age should be reconsidered. The
federation supports the bill's use of many of the consent
principles codified by the government's Health Care Consent Act.
However, the federation's members are gravely concerned that the
bill departs from these principles in two key areas: (1) its use
of the chronological age of 16 years as a factor in assessing a
patient's competency and (2) the lack of protection given to the
confidentiality of children's health information when the
information does not relate to treatments within the meaning of
the Health Care Consent Act.
Young people are no
different from other health care consumers. All health care
consumers need to be comfortable that information given in
confidence to their health care provider will remain
confidential. Patients need to be confident that their health
care professionals will do their utmost to maintain the
confidentiality of their information. Only if this assurance
exists will patients provide the full information on symptoms,
lifestyles and habits that health professionals need to make
informed assessments and treatment recommendations.
Our suggested amendment is
that to address these concerns sections 46 and 56 of the bill
should be amended to comply with the approach taken in the Health
Care Consent Act so that competent patients can have privacy over
their own records.
In conclusion, to review
the main points, the public will not be served well by making
regulated health colleges custodians of patient charts. These
charts are not created by the colleges and are used only as
evidence. The protection in the bill for quality improvement
activities ought to apply to colleges' quality assurance programs
as well. The consent provisions for youth under 16 years of age
should be consistent with the scheme set out in the Health Care
There are additional
points, some of which are more technical in nature, contained in
our written submission. For example, we are concerned that making
the bill paramount over our enabling statute, the Regulated
Health Professions Act, may jeopardize our ability to obtain key
evidence for investigations into misconduct or incompetence. The
definition of "proceeding" in the bill may interfere with our
investigations as well.
Outside access to college
investigative files may defeat some very crucial investigations,
particularly those related to fraudulent billing or narcotics
We would ask you to review
our submission on these points. On behalf of the federation, I
thank the committee for your time, and if you have any questions
of us now-
Thank you very much. That does leave us about three minutes per
caucus. We'll start this round with the government.
That was a very clear and helpful submission. We have no
questions. Thank you very much.
McLeod: It seems that it doesn't matter how much time we
spend on technical briefings on this bill, there's always
something we've missed. I'm not aware of this issue around
mandatory reporting, and I wonder if you could just explain to me
a little bit more about your concerns with the fact that the
current requirement for mandatory reporting is removed by Bill
Steinecke: In our regulating statute, the Regulated
Health Professions Act, which is our enabling statute, a
practitioner or an employer of a practitioner must mandatorily
report certain things. For instance, he must mandatorily report
reasonable grounds of sexual abuse of a patient; he must
mandatorily report, in confidence, professional misconduct or
incapacity if it leads to suspension or firing of the employee or
the colleague or dissolving of the partnership. Those have to be
made on a mandatory basis. The concern is that since this bill
overrides all other provisions, someone could say that we no
longer have to make this mandatory report; under section 36 of
the bill everything is discretionary. The employer or colleague
"may" report, and so may choose not to, harming the public and
putting them at risk because we don't know what's going on.
McLeod: I appreciate that clarification because I
realized it was the permissiveness that was the concern, but I
hadn't really understood that that potentially could override the
mandatory reporting in those areas.
We've heard a lot today
about the inconsistency between Bill 159 and the regulatory codes
that the colleges are working under. I guess the bottom-line
question comes down to, do we need Bill 159 in order to protect
the privacy of patient records, or in your view does the HPRAC
legislation respond adequately to the need for protection in
terms of health care practitioners?
Mr Steinecke: We
can't comment in general as to the benefits of the bill outside
of our area, but we believe that as far as the regulated health
profession colleges are concerned there is no need for the bill,
that our legislation is specific, it covers our unique situation
well and it doesn't create problems. So as far as we're concerned
we believe that the colleges should not need to be covered, that
they should be exempt in some form or another. Whether the bill
is needed for other purposes, for example for practitioners, I
think it's not really for us to comment.
McLeod: But there could be a difference then between the
standard of privacy protection carried out by a practitioner and
the standard required by the college? I would have thought those
two things should be synonymous for all of the health
practitioners that are regulated.
Steinecke: I think there is actually a significant
difference. The practitioner is a gatherer of the information and
uses it for treatment. The college does not gather, does not
create the information itself; it simply uses the information
that is created by others as evidence for its regulatory
processes. That really puts us in a very different category, and
it puts us in very unique situations in terms of, for instance,
the need for information perhaps without consent. In order to do
our jobs we would have a need for that that practitioners don't
McLeod: If we have Bill 159 and the colleges are exempt,
which takes us back to the original recommendation read this
morning, would that not put practitioners in the position of
working under two very different sets of rules regarding privacy
and the collection, disclosure and protection of information?
Steinecke: If the colleges were exempt, it wouldn't
directly affect practitioners at all. They would still be covered
by the bill or whatever replaces it. The colleges, however, are
the ones that could end up with two separate regulatory rules,
because the Regulated Health Professions Act does not directly
set rules for practitioners. It only does this indirectly through
what is professional misconduct. But it directly governs the
colleges' handling of the information. So to put us under the
bill without proper accommodation would put us under two sets of
rules. The same would not necessarily apply to practitioners,
because they would be governed by the bill and not directly
through the legislation itself.
Lankin: I appreciate the examples you have provided to
us. All the colleges so far, and you as a federation, have
indicated that you think the provisions under the Regulated
Health Professions Act should have primacy over the Personal
Health Information Privacy Act. I have a concern with blanket
exemptions. I would like to see issue by issue spelled out, and
where it's necessary to have the exemption, build that into the
legislation around that particular exemption. Perhaps that's a
challenge to go back-you've identified some and there may be
others-and provide the committee with that.
But let me ask you,
following on Ms McLeod's question around mandatory reporting: you
specifically said that subsection 11(2) and clause 36(1)(b) are
discretionary and that provides a problem. Could you tell us how
you see those sections providing discretion that would interfere
with the mandatory reporting provisions?
Steinecke: Section 11 says this legislation supersedes
or is paramount over any other legislation with respect to
confidentiality. To the extent that our legislation was in
conflict, it would be overridden. Section 36 says that a
practitioner or a health care custodian of any sort may disclose
information to a college pursuing its mandate under the Regulated
Health Professions Act. Our concern is that a court would
interpret that "may" as saying you don't have to unless you want
to. The provision in the Regulated Health Professions Act that
says you must report sexual abuse, for instance, is now
overridden. You don't have to do it unless you want to. Of course
the whole purpose of making it mandatory was so that people
couldn't decide to withhold the information for whatever reason,
whether it be a very legitimate reason but misguided, or whether
it be some sort of deal so that their problems would go away but
the public would still be at risk.
Lankin: So if that language in a section like that was
amended to bring it in line with the RHPA provision, if this
committee and the government felt that was appropriate, that
would be satisfactory, and if we addressed all the other
concerns, as opposed to a blanket supremacy clause for your
Steinecke: Yes. It would be possible to deal with it
throughout the legislation. The problem is that the two pieces of
legislation are so detailed and so complex that we don't think it
can be done. We think the only approach that would really capture
all the unforeseen, unintended consequences would be to allow the
Regulated Health Professions Act to be the scheme that applies to
colleges in most circumstances.
Lankin: Currently, as the bill is proposed naming
colleges health information custodians, people you release that
information to then become recipients under this legislation. So,
for example, there is an obligation on experts if you have them
review files. What is currently within the RHPA scheme that
protects information that you share with other third parties?
Steinecke: The secrecy and confidentiality provision in
the Regulated Health Professions Act is quite broad, and it
really does address this. It's not only the colleges; anyone who
receives it-for instance, experts, lawyers, whatever-is then
governed that they must keep it secret as well. So the recipients
are dealt with very comprehensively.
Lankin: Would it be parallel to the obligations on
recipients under Bill 159?
Steinecke: I would say it's analogous. They basically
cannot release it to anybody except for an RHPA purpose. So an
expert couldn't tell anyone else, but they could use it when they
testify at a discipline hearing, for instance.
Chair: Thank you, gentlemen, for your presentation
before us here this afternoon.
Chair: We've done some realignment of the agenda to fill
the vacancy at 5 o'clock. Our next presentation will be Dr Bob
Frankford. Bob, good to see you again. Welcome back to committee
and to Queen's Park. We appreciate your accommodating our
Frankford: I appreciate being able to come and
contribute to this discussion of Bill 159. I am here as an
individual, and I want to mention some affiliations and
experience that make me qualified to speak on the topic of health
information and privacy. I qualified as a doctor in England and
have spent over 30 years in the medical field in Ontario. I've
spent the largest part of my career as a general practitioner in
Scarborough and east-end Toronto. More recently, I spent over
three years as attending physician at Seaton House, the largest
shelter for homeless men in Canada. This is a distinctive
setting, with a high turnover of patients suffering from a wide
variety of mental and physical health problems. It certainly
would have been helpful, in that setting, to have ready access to
individuals' medical records; for example, for maintaining
recommended prescriptions for psychiatric disorders or infectious
I am also currently a
board member and vice-chair of a supportive housing agency for
individuals with mental health conditions called Bayview
Community Services, which is situated in the north of the city. I
am not here directly on their behalf, but was able at a recent
board meeting to discuss aspects of this bill, and I would
certainly like to make the committee aware of some of the
concerns raised by staff and clients there. This agency and
others in the field of community health stress the importance of
long-term trust in the relationships with their clients and feel
that, if passed, the bill could be quite harmful to the often
fragile stability they have been able to create for their
It's a complex bill with
many details. I certainly have not read it page by page, but if
some observations I make are helpful, that's what I would like to
do now. This bill would impact all individuals in the province
and a huge range of health providers: individual practitioners,
institutions and organizations. The basic premise of this bill
should be, "Does it advance health care delivery?" To remind you,
at any time we presumably are dealing with the health and records
of some 10 million people. This means the number of records, let
alone items of information, must be multiplied many times, given
the multiplicity of ways in which care may be received.
I looked with interest at
the Hansard of this committee. I see the extensive contributions
of Ms Cavoukian, the Ontario privacy commissioner, and Mr
Radwanski, her federal counterpart. Mr Radwanski's submission
seemed particularly forceful and critical of the bill. I was
impressed by his understanding of the issues and his questioning
of how much the management of health systems requires access to
personal information. The example he talked about, of studying
appendectomies done within a hospital, was a good one.
One of the general
principles of the bill states that, to the extent possible,
individual identifiers should be removed or concealed. I don't
believe anonymization is a drawback to effective planning or
research, In fact, it can be argued that anonymization is
In introducing the bill,
Minister Witmer stated it was a necessary step in the
introduction of primary care reform. So far as I can see, this
connection hasn't been followed up very much in subsequent
debates I have read, and I frankly do not see it as being
fundamental to primary care reform, of which I think some type is
certainly long overdue. It's something I have wanted to work on
for many years. Unified, lifelong medical records with rights of
patient access could well be beneficial and may be how we bring
health care into the electronic age, but I think that needs to be
planned in detail before legislation is introduced.
I'd like to raise
questions about what constitutes health information. You may be
aware of the debates that have raged about what to include in
diagnostic categories. I'm thinking, for instance, of the DSM
classification of psychiatric conditions put out by the American
Psychiatric Association, which I think is the standard for
psychiatric diagnosis. Until fairly recently, homosexuality was
listed as a diagnostic category, which led to considerable
controversy. Was it health information then? Is it now?
I fully appreciate the
importance of comprehensive and transferable health information
for patient care. A career in general practice means that
individuals you saw as babies come asking to know their
immunization records in order to work in their own children's day
cares. I was pleased to see there was discussion in the committee
about the transfer of medical information into jails for the
treatment of inmates. My experience at Seaton House more often
involved the reverse, of requesting the transfer of information
Obviously there are
issues of consent and privacy, which warrant considerable
discussion of individual versus group rights. However, I suggest
this is something that can and should be dealt with in relation
to existing practices within and between health professions. The
minister and ministry of corrections certainly need aggregate
data about their populations, but even so I think inmates are
entitled to the general rights of all.
On one specific area in
the bill, I find the limited ability for individuals to change
their records quite strange and self-defeating. Surely planning
and other purposes seen in the bill require accurate information.
Apparently, even the finding of fraud in a court of law only
allows the filing of a record of objection.
In conclusion, I believe
there is a need for the transfer of useful information to ensure
effective health care for individuals and to do research and
planning. The potential for using currently available data is far
from being realized. Epidemiology and population-based approaches
are needed, but to a large degree I believe the data can be
made anonymous. I
won't comment on the relationship of the proposed Ontario
legislation with federal legislation, though it would seem that
working this out may be the first priority.
Finally, I would like to
return to the basic question about this and any other health
legislation. Does it advance health care delivery?
Chair: Thank you very much, Doctor. You've left us time
for a question from one caucus, and this time the rotation will
start with the Liberals.
McLeod: You're absolutely right that the legislation,
when it was introduced, was seen to be something that was
necessary to move into primary care reform, and yet in the
presentations we've had and the technical briefing we've had, I'm
not sure that's really been a focus.
My sense of the issue,
though, is that it's a question of coordination of care. If an
integral part of primary care reform is to have coordinated
health care between the various providers, there needs to be an
ability to exchange information fairly freely between those
I guess my question would
be, in your view is it possible to move ahead with that kind of
coordinated care across the current providers-hospitals,
physicians' offices, the long-term-care setting, the community
health setting-and have that information available as it's needed
and still not open legislation as broadly as this bill appears to
Frankford: I think we have to look at what is the system
now. I think it's slow, paper-based, has many institutions and
all sorts of either legislated or customary requirements about
transferring records which I think are far from satisfactory, but
it's there. I think we certainly could be moving gradually to
make it more electronic, and I think some things are really very
I would like to take this
opportunity of mentioning something I have mentioned in forums
before, which is universal primary care registration. We know the
minister is or has been in the UK, and it is fundamental to the
National Health Service that everyone is registered with a GP or
health centre or something. I feel this is really basic to making
it universal. To start with the electronic records is very nice,
but I think it's going to take a long time coming and I don't
think it's the base from which primary health care starts.
Chair: Thank you, Mrs McLeod. Good to see you again,
Doctor, and thank you for taking the time to make a presentation
before us today.
Lankin: Mr. Chair, is it possible to make copies of the
notes Dr Frankford had and have them circulated to the
Chair: I'll certainly ask the clerk, if he's prepared to
share those with us.
ONTARIO COLLEGE OF PHARMACISTS
Chair: Our next presentation will be from the Ontario
College of Pharmacists. Good afternoon and welcome to the
Langlois: Good afternoon. My name is Tina Langlois. I'm
the manager of legal services and patient-relation programs at
the College of Pharmacists. Sitting with me is Deanna Laws, the
registrar of the Ontario College of Pharmacists and herself a
We want to thank you for
the opportunity to provide you with our comments on this piece of
legislation. We've done so in writing, and we will not be filing
any additional written information. We simply want to emphasize a
few points and perhaps give you our unique perspective from
I think the first thing
we need to state as a college is that we very much support the
goals of this legislation. We feel it's important that personal
health information is collected, used and disclosed in an
appropriate fashion that protects the confidentiality of the
information for the patients. We also want to advise you that we
concur in the submissions of the federation, and we won't be
repeating them because I think they've covered them in quite a
Again, a little bit of
our own perspective from the world of pharmacy. Pharmacists
practise in an information-rich and technologically driven
environment. They have been keeping computerized records for
many, many years. Electronic transmission and storage of these
records is nothing new in pharmacy. Pharmacists have been
transmitting electronic information to insurers-in fact, to
Ontario drug benefit-for quite some time. I believe it's actually
a requirement of Ontario drug benefit that pharmacists transmit
that information electronically. So the electronic and computer
world is nothing new to the world of pharmacy. The other thing
you need to know in terms of our information-rich environment is
that millions and millions of prescriptions are filled annually
in Ontario, and each of those prescriptions creates an individual
piece of personal health care information which is then required
to be stored and dealt with by our members.
Our members have always
displayed a high standard of professionalism as it relates to
confidentiality. To let you know why that is or where they get
the guidance for that, we have a principle in our code of ethics
that deals with the concept of confidentiality of patient
records. If I could, I'd like to read it to you so that you
understand the environment in which pharmacists practice:
"The pharmacist preserves
the confidentiality of information about individual patients
acquired in the course of his or her professional practice and
does not divulge this information except where authorized by the
patient or required by law. Pharmacists protect their patients by
serving them in a private and confidential manner. Pharmacists do
not divulge information that identifies the patient; except in
instances where there is a compelling need, in the pharmacist's
professional judgment, to share information in order to protect
the patient or another person from harm or where authorized by
the patient or required by law."
That is the extent of the
information in our legislation, standards or codes that deals
with confidentiality. While that may seem like it's not a great deal, it
has allowed pharmacists to practise very professionally with very
few complaints in this area to date. In fact, complaints
regarding the manner in which confidentiality of patient
information has been dealt with by our members represent less
than 0.03% of complaints received in the last five years.
We as a college are
confident that our members will continue to preserve the
confidentiality of patient health information and deal with it
appropriately because they have this obligation under the code of
ethics, regardless of whether this legislation should apply to
them. The other thing we want to clarify is that we do think it
should apply to pharmacists. They are health care professionals
and, as such, should be covered by this legislation.
We come to you to ask
that you consider not including colleges-ourselves as a
college-as custodians under the act. A couple of reasons for
this: firstly, we don't think we need to be included as
custodians under the act in order to protect the public in this
regard, in order to preserve the confidentiality of their
records. Further, we are concerned that there may be problems
that manifest themselves with regard to our investigations and
conflicting legislation and potential court challenges, should we
in fact be included in this act.
A little bit about who we
are and what we do at the college, now that I've told you about
our members and the environment in which they practise. The
college's mission is to regulate the practice of pharmacy,
through the participation of the public and the profession, in
accordance with standards of practice which ensure that
pharmacists provide the public with quality pharmaceutical
service and care.
The personal health care
information that is gathered by the college is done so in the
course of performing this mission and in the course of regulating
pharmacists and the practice of pharmacy in the public interest.
We are generally seeking to gather personal health information
where we have either received a complaint from a member of the
public or where the college is initiating an investigation due to
its concern for public safety. That is the context in which we
would be collecting personal health information.
As you have heard no
doubt from other colleges and from the federation, the college is
governed by section 36 of the Regulated Health Professions Act,
which provides extensive confidentiality safeguards for any
information that comes to the college's attention, be it personal
health care information or other information, for that matter. I
can assure you that with a $25,000 penalty, those of us who work
in these areas at the college are extremely cautious in the way
we deal with the information. We keep computerized records of
what information we gather and where we store it. We also log
receipt of it and return the originals to the source upon
completion of our investigation. That is not done because of this
particular piece of legislation but rather in keeping with
general good practices for investigations that may well lead to
litigation. There is a need to preserve the evidence and to make
sure that you keep a handle on it. So we do it because we need to
We're not aware of any
complaints or concerns that have been expressed about the way in
which the college has handled personal health care information
from members of the public of Ontario. The concerns that we have
if the college is defined as a custodian within the act are
outlined in our submission. Just to review them again, we are
concerned that our inclusion in the act may impact our ability to
investigate, particularly where the patient involved may in fact
be involved in the offence in question. I turn your attention to
perhaps the issue of insurance fraud, where somebody is getting
prescriptions run through a pharmacy or getting prescriptions
from a doctor and in fact the patient is the one who is
benefiting by being reimbursed by their insurer. It's obviously
in their interest not to co-operate with us or provide their
consent to get those records.
Our concern is that we
may find ourselves-and it is speculative in nature and I will
grant this, that we don't know this is what will happen in the
future. It is indeed a concern. Our concern is that we will end
up in court, challenged by members and challenged by patients and
spending valuable college resources that are better directed at
regulating the profession in the public interest. These kinds of
court challenges take a very long time and eat up a lot of
resources, so our concern is there.
always causes problems until it is sorted out, and that takes
time. Our request of you is that you allow this time for these
things to filter through this particular piece of legislation,
but in the interim you have faith in the provisions of the
Regulated Health Professions Act as they relate to the colleges
and allow that act to take primacy over this. Any changes or
concerns that may manifest themselves in the fullness of time as
this legislation is applied to members, and as we hear from the
commissioner about what particular complaints or concerns are
expressed, we feel can adequately be dealt with by amending the
Regulated Health Professions Act. Again, the colleges have many
challenges. Certainly, we would not look forward to adding
another piece of legislation that potentially conflicts to our
level of challenges.
The options you have
available to you: I guess the first option is to, again, simply
have faith in the fact that the Regulated Health Professions Act,
which is a fairly recently drafted piece of legislation that is
currently under a very extensive review, should be the primary
piece of legislation that deals with colleges, that it deals
adequately with the issue of confidentiality of patient records
and that there is really no pressing public need to include
colleges as custodians at this time.
The other thing that I
would just like to bring to your attention is the fact that as
recipients of this information from custodians, because we
believe that our members should be custodians, if we receive the
information from our members in this way, then obviously we would
be covered by the
provisions of the act that deal with recipients of the
information. Again, were we not covered by the RHPA and those
very strict confidentiality provisions, I think the pieces of the
legislation found in section 24 that deal with how a recipient of
information has to act or behave would adequately also protect
the public from any concerns they might have around the release
of this information inappropriately.
I hope that we've been
able to help you at least understand the environment in which our
members practise and the concerns that our college has. We would
urge you to consider not including colleges in the definition of
custodians of personal health care information.
Chair: That leaves us just under three minutes per
caucus for questioning. This time we'll start with the NDP.
Lankin: I actually don't have any questions. I have a
request to make, following this and the other colleges'
presentations, first of all, to legislative research, if we could
have an analysis provided of the privacy protections under the
RHPA and if it's obvious where there are any differences between
that and the Personal Health Information Privacy Act, and
secondly, if we could ask the ministry if they would determine
whether or not the HPRAC review, which we understand is just
Langlois: I believe so.
Lankin: -and long-awaited, and we don't want to hold it
up. But is there any capacity for HPRAC, even secondary to the
main review, on a separate issue, to take a look at this and
provide either any recommendations they may have if there are
required amendments to the RHPA or if they have any
recommendations with respect to this issue of primacy. That might
Spina: Thanks for the presentation. You were fairly
concise-and we all appreciated it-in distinguishing between who
was the actual custodian of the data in the case of the
pharmacists themselves versus the college and therefore you felt
that the current legislation would cover your status as a college
in accessing information in the course of an investigation as a
result of a complaint.
Langlois: What I was saying was that if the college is
not included as a custodian but in fact they receive their
information from one, then those sections apply, which I believe
provide certain parameters around how a recipient can behave.
Spina: Do you practise any mechanism of anonymity when
you do the investigation where you are accessing patient data?
Are you dealing with a number or are you dealing with a name and
address and so forth?
Langlois: We are dealing firstly with a number.
Prescriptions have numbers on them and oftentimes the data is
indeed presented in that fashion because there's no need to
identify any patients. There is a prescription number, a drug
dispensed and an amount paid, and the patient's name is really
not relevant at all. It is revealed, however, when we're trying
to determine whether or not a prescription was authorized, for
instance. If we contact a doctor and we want to know if the
doctor has prescribed a certain thing for a patient, we need
obviously to provide that physician with the information in order
that he or she could either confirm or deny that they have in
fact prescribed it.
Spina: You would also probably identify the difference
between someone who's under the DBF or someone who would be
paying under their own insurance plan.
Langlois: We don't. However, the insurers certainly do.
Most of us who are covered by a drug plan have already signed
away many of our confidentiality rights anyway, because the
person who pays for our drugs has permission to review the
information in question. But we at the college certainly don't
deal with the information any differently. We would still get it
from the pharmacy because the actual hard copy records are
Spina: Do you collect any data other than in the course
of investigation from the perspective of analysis of usage or
comparative data, market research data, any of that sort of
information either among the various pharmacists or classes of
Langlois: We don't collect that kind of information.
However, there are groups that do. IMS, I believe, is the most
notable example of a group that collects data about drugs
dispensed and prescribing habits etc. The college's standards and
documents that were written around that specifically state that
no identifying patient information can be released with that, so
it can only be dealt with in a statistical fashion.
Spina: That's IMS's practice, or yours?
Langlois: That's the college's standard on its members,
so if you as a member are going to release information to
someone, you have to ensure for yourself that they are using it
for a purpose that is appropriate and that there is no
identifying information-forget name, include also address etc-in
the information you are providing.
Spina: It's not entirely fair of me to ask this next
question, but you don't have any idea whether IMS practises
anonymity or not? They say they do.
Langlois: The data they receive are anonymous. They can
only reveal what we reveal to them, and since they only get
anonymous data, then what they get is cumulative.
Chair: We'll move to the Liberal caucus. Mrs
Pupatello: In short, the college needs to be separate
from Bill 159 so that you have greater powers of investigation to
fulfil your mandate.
It is my understanding
that the pharmacists would like to have greater access because it
helps them do their job better.
Pupatello: As a pharmacist, they want to see that there
aren't other medications out there that are going to conflict
etc, or they could develop patterns of overuse or whatever all
those things are. So the pharmacists like the idea of being able to see
more of the information around the patient.
Langlois: Absolutely. I think you will see that they are
even looking to ensure that they can have access to diagnoses and
things like that which perhaps aren't traditionally given to them
because, again, it will help them do their job.
Pupatello: If you had to choose in terms of standards,
is Bill 159 considered to have higher or lower standards that you
should be subject to? One would replace the other. In this case,
you would be superseded by 159, which actually hampers your
authority to do your job.
Langlois: I guess my position is different with regard
to us versus our members. Our members right now are governed by a
code of ethics around confidentiality and this bill is a higher
standard because it is more specific and it is more detailed in
the way in which they have to deal with things. As I read to you,
our code of ethics is a very general and overarching statement of
guiding principles. As it relates to the college, though, I think
our confidentiality provisions in the RHPA, at least the way I
have always read them, are very strict and they impose a very
high level of confidentiality. I'm not sure that I would think
that this particular bill would impose any higher level of
confidentiality on the college. It may just lead to
Pupatello: The idea of a lockbox being included in the
legislation-if you followed, it had been in originally and now
it's out. How would that change how you do your work?
Langlois: I'm afraid I came to this piece of legislation
after it had been removed so I'm not really familiar with the
lockbox provisions of the act.
Pupatello: It's just the notion that there would be
certain features that an individual could select to be put in the
box and not allowed. I guess only in terms of that example you
used for our colleague, if it's the patient you're actually
investigating and not the pharmacist-
Langlois: Sure. It's always the pharmacist we are
investigating, but sometimes the pharmacist has the assistance of
the patients or at least the concurrence of the patients in doing
what they're doing. We would never investigate a patient, ever.
That's not our job nor is it our intent.
Pupatello: But it comes as a result of this type of
review that you would see this.
Langlois: We would be investigating a pharmacist. Our
concern would be if a patient was in collusion with the
pharmacist. They could either lock away that information, if
that's how a lockbox is to be used, or ask that it be varied or
changed in some way. Because there's a financial benefit and
incentive to them, frankly, in that limited scenario for them to
do that, the college would be completely hampered in their
ability to get to the bottom of that.
Chair: Thank you very much for coming before us this
afternoon. We appreciate your presentation.
Chair: Our last presentation this afternoon is Professor
Risa Deber. Thank you for accommodating our slightly altered
Deber: Thank you very much for inviting me. I'm speaking
here not as a representative of any group at all; I'm speaking
here as an academic.
I commend you and the
drafters of the bill for the careful thought that's been devoted
to this very difficult issue. What I want to talk about is the
need to balance privacy issues and the critical importance of
protecting the public against what I consider to be also the
critical issue of making sure that valuable research can be
conducted. I would urge caution in how the bill is amended with
respect to access to information because some of the suggestions
I've been hearing I think would interfere with things that people
would want to have happen.
In terms of who I am, I'm
a professor in the department of health administration at the
University of Toronto, which is in the faculty of medicine. I'm
an active teacher and researcher but I specialize in health
policy and medical decision-making. I'm not a lawyer, I'm not a
privacy expert, I'm not an epidemiologist. In fact, most of my
own research does not involve identifiable data, so in narrow
terms, my research agenda is not likely to be personally affected
by this bill. But I do sit on a lot of committees, including
grant review committees for most of the major national granting
bodies. I've sat on the Social Sciences and Humanities Research
Council, the Medical Research Council and the National Health
Research and Development Program. I've also sat on government
task forces and committees, including a current one looking at
genetic screening for adult-onset disease. I'm also on the ethics
review committee for health services at the University of
Toronto, which handles faculty medicine and other health
services. I am also past-president of the Canadian Health
Economics Research Association. I am not speaking on behalf of
any of these bodies.
I am concerned that if we
take too narrow a definition of privacy, I think we'll end up
doing harm to research and to the public which relies on
research. For example, I've heard comments that suggest that the
only valid use of personal data is to advance the care of the
individual whose data is being accessed. But our care depends on
access to information from previous individuals. There is a
famous quote from Isaac Newton saying, "If I have achieved
anything at all in life it is because I have been able to stand
on the shoulders of giants." Should we become unlucky enough to
be ill, we expect to be able to benefit from research on previous
patients. Similarly, if we want to access services, we expect
that somebody, whether it be government, district health
councils, hospitals or doctors, will be examining the performance
of our system, making sure that the needed services we have
are both available
and of high quality and at reasonable cost, that we're not
Many people have pointed
out that our health care system suffers from too little
information and too little research, not too much. We don't know
what we're spending. We don't know what the results are of the
resources we are devoting to health care. We don't know what
we're buying with them. We don't know what best practices are to
guide and improve the performance of our system.
When I read some of the
testimony that has come to the committee, with its stress on,
"Let us control and limit data collection and use, let us
prohibit gathering of data that is not required by law," I feel
it would be very unfortunate, because we can't see the future
clearly. Our track record in identifying beforehand precisely
what information is going to be required is not very good. It's
precisely because we don't have unified systems of care that it
is often essential to be able to link data, not just to ensure an
accurate depiction of the population, which was Dr Cavoukian's
point-and I really appreciated her comments-but because any one
data source is going to give you a partial and incomplete
In many cases, from a
practical point of view, obtaining consent is an inferior
solution, not only because it is often very expensive and often
infeasible, but because it can require a much greater invasion of
privacy than simply linking and anonymizing files. If I'm not
going to be identified, I'm not going to be contacted. I think it
is far more invasive to have somebody call me up and say, "Can we
put your record into our study?" than simply to put your record
into the study and make absolutely sure there's no way of
tracking it back to you or affecting what happens to you.
There's research I was
doing with the HIV population in which I managed to convince our
ethics committee that the only way I could endanger these people
was to get their signed consent, because then I have names that
could be leaked. If there was no signed consent but implied
consent, then there was no possibility that anything could be
leaked or they could be endangered. I think sometimes too narrow
a legalistic view can endanger people more.
I thought you might find
helpful a couple of examples of research that I think most people
would want to have done but which the suggested approach to
privacy and the requirement for prior consent could make
impossible if we're not careful in how the bill is drafted. These
are not hypothetical; these all come from examples I have seen
and, in one case, from research I have been trying to do.
The first one is a
women's health question. About a year ago I was approached by a
young woman who was a cancer survivor and who was working with a
breast cancer support group. She was receiving frequent requests
from women with pre-menopausal, often aggressive disease. They
wanted to know which of the alternative treatment approaches
offered to them would maximize the likelihood that they could
subsequently have children. She found remarkably little
information available. So her support group, which was not well
resourced, wanted to know whether they could contact people who
had run clinical trials and see if they could contact the women
who had been in the clinical trials and ask them about what the
impact was on their subsequent fertility, depending on what sort
of treatment they had received. Note that there is no way these
women would have given prior consent to having their data put to
a second use, because nobody had thought of doing this study. I
was forced to tell her that no ethics committee I know of would
approve this. But also I suspect, given the opportunity, almost
every woman surviving cancer would be delighted to have this sort
of research done. There's one example of which we will not be
able to know because of requirements of consent.
The second is an issue
about workplace hazards. This is a study that did come to our
ethics committee in a province, not Ontario. They began to
suspect workers in a particular plant might have been exposed to
hazardous materials in the years prior to 1985, when they changed
the process. This was supported by the union, the company, the
province and the Workers' Compensation Board, because they wanted
to know about things like should they be giving them workers'
compensation, should they be concerned around occupational
What they wanted to do,
and they had a budget of less than $15,000, was just take a list
of everybody who worked in the plant before 1985, link the names
to the provincial cancer registry, and see whether there was a
higher cancer rate. Now, if you said no, you have to have
consent, recognize, first, it's going to be far more intrusive to
contact them. Secondly, there is a Catch-22, because if people
have died, you can't get their consent. So precisely the people
who were most likely to have been adversely affected were the
people you would not be able to contact, because you couldn't get
consent and because, as best I can read the bill, you certainly
don't have proxy consent and you don't have proxy consent for
dead people. Also, trying to locate where people in 1980 are now
living is going to be a rather onerous thing. I can't see how
it's better protection of privacy to set private detectives on
you to locate where you are and get permission than to do a
There's another issue:
it's not cheap to try to get consent this way. There's another
study I know of that was trying to find out whether disabled
workers were getting adequate payments. The entire study would
cost $80,000. They estimated that just to try to get consent
would cost an additional $120,000. This is in an environment
where there's not that much research funding around. The latest
CIHR competition funded less than a third of all applications and
didn't fund them at particularly high levels.
Also note that these
studies were very carefully designed. There could be no
identifiable information released; there could be no possibility
of harm coming to the individuals whose health information was
being included. I think those sorts of provisions were critical.
But I think in
occupational health and safety studies, ignorance is not bliss.
If you can't do research because of views of confidentiality,
there's immediate harm to individuals who will continue to be
exposed to hazardous situations. There are also people who are
going to be denied benefits they should have received. So privacy
becomes a shield for no accountability.
My third example is risk
assessment. Several decades ago, a number of young women were
diagnosed with a very rare form of cancer of the vagina or cervix
called clear cell adenocarcinoma. They did case control studies
in which they only looked at the women presenting with this
condition, and they realized that the mothers of these women had
taken a drug called DES during their pregnancies. This terrified
these DES daughters, because they thought they were all going to
die of this type of cancer. There were suggestions that you might
do surgery, all kinds of rather unpleasant things, cauterization,
Fortunately, they were
able to go back and take a larger cohort of the daughters and
find that although there was a higher relative risk, there was a
very low actual risk. Fewer than one in 1,000 of the DES
daughters would actually develop this cancer. As a DES daughter
myself, I was rather pleased that they went back and did this
But as a sidebar,
subsequent research into DES has been really hampered. Because we
control and limit the data collection, nobody knows who had it.
So the US National Cancer Institute says, "Between five million
and 10 million people"-which is a rather wide range-"were exposed
to DES during pregnancy," and many of them don't even know they
were exposed. Here is a situation where even though there are
emerging health issues, you can't even find them.
I think genetic testing
is an analogous situation. We're very worried about what this
will do to people who are told that they have problematic genes,
but a whole lot of the genes we find are what they call
propensity genes. These indicate that there's a higher risk for
conditions such as heart disease or Alzheimer, but we don't
really know it, because all we've got is case control studies. We
know that somebody with heart disease is more likely to have the
gene, but we have no idea about how likely people who have the
gene are to have heart disease. So we have a situation where
these propensity genes may not indicate high risk at all.
We're on the verge of
spending enormous amounts of money, both public and private-the
private will come from employers and will be a burden on payroll
and a burden on our economy-for genetic tests that have very
serious potential consequences to people who test positive, and
we don't know if the results are going to be useful. I really
hope we can figure out some way to store genetic samples, very,
very carefully protecting who's going to get access and how it
can be used; but some way of seeing, "OK, if I really have this
supposed heart disease gene, how likely am I to get heart disease
and how does that compare to the rest of the population?"
Getting a false positive
is not benign. There's a real psychological impact of being told
you're at risk for a serious or life-threatening condition.
Additional tests are painful, dangerous and expensive. Here
again, if we're ignorant, we're going to enrich the providers of
tests, but I don't think we're going to do much for the people
who pay for care or for the public.
The final example is a
self-serving one, which is my own research, because for the first
and certainly last time, I tried to work with administrative data
to find out whether setting up regional health authorities, which
they've done everywhere except Ontario, affected people's access
to specialized care outside their region. The Canadian Institute
for Health Information-CIHI-keeps some of these data, not all of
them; they still don't know much about outpatient or
So we identified some
tracer conditions and we didn't need personal information. We
weren't going to say that this is what happens to Mrs Smith. We
weren't even going to say this is what happens to Peterborough.
But we had to be able to link to see if Mrs Smith in Peterborough
was being treated in Peterborough or was being treated outside of
Peterborough. We could not get those data. We have been fighting
for two years to get access to that level of data. Finally, the
only way we're able to do it is it's going to be done in-house by
CIHI. We couldn't even get that level of linkage, because, among
other things, it appears that hospitals are considered people and
they have privacy rights too. Even though we weren't going to
release identifiable information, we couldn't get it to do the
I have a graduate student
who is trying to see whether repatriation of care from pediatric
hospitals would affect their viability. She had to go to each
pediatric hospital to get written permission for them to tell her
how many cases they were doing and what sort of care. Another
student was trying to look at laboratory services. Again, she
could not get information. So we have already massive
difficulties in monitoring the performance of our system in terms
of restrictions on access to data.
I would like to know what
an appropriate payment would be if we wanted to move to rostered,
capitated delivery systems. We can't get that. I would like to
know what the impact is for private insurers and business of
shifting care to the community. We can't get that. If we're going
to make wise policy, I think it's important to leave some ability
to do this.
The legislation gives
power to official government agencies, but we'd like to have some
way to allow external scrutiny of performance, whether it be from
patient organizations or academics, as long as there are careful
protections put in place so that you're not going to be
identifying or harming individuals. The law, as it stands, will
make that very difficult. The amendments I've heard suggested
will make it impossible.
With the recognition I am
not a legal draftsperson, there are a couple of principles I'm
being sort of brazen enough to suggest. The first is I think it's
important to clarify how academic researchers can get access,
with appropriate safeguards, to linked data at a reasonable cost.
There have been health economics meetings in which Canadians were
doing their analysis on American data because they could get the
American data at cost for the CD, and the Canadian data, if they
could get them, would be $20,000. I don't think it helps us not
to be able to see what Canadian data tell us around how to better
improve our system, and I don't think most academics will qualify
as health information data custodians under the terms of the act.
So whatever we're doing, how can that academic get hold of
Second, I would not
unreasonably limit the collection of data, particularly since
history suggests we can't always foresee what research questions
are going to be pressing. I think we do need to make sure
whatever data we collect can't be misused.
Third, consent is
desirable, yes, but it's not always feasible, particularly for
retrospective studies. I would hope that we could avoid a blanket
requirement for prior consent, particularly if we're going to be
anonymizing data and it will not personally affect the population
in the study, and when trying to get consent, it's going to be
more intrusive than careful controls on access to the personally
Fourth, we probably have
to have some ability to have substitute consent, prior consent,
you know, blanket consent, because if researchers don't need to
track all potential subjects, I think we're going to have more
privacy, not less.
Fifth, I think we've got
to recognize there are valid uses of personal data for purposes
that go beyond the care of that individual at that point in
I'd like to thank this
committee for their kind attention. As Mr Sharpe noted at the
beginning, there are competing interests, and balancing them is
difficult, but I am not seeing the public who would benefit from
research-and be harmed by ignorance-testifying in front of you.
So what I am trusting and expecting is that you, as their
representatives, are going to continue to take their interests to
Chair: Thank you very much, Professor. As I'm sure the
committee has noted, it has allowed you to go well over time. But
seeing we'd had a couple of cancellations at the end of the day I
thought that was quite acceptable.
Pupatello: Chair, do we have time for a quick
Chair: Well, only in fairness to all of the other
presenters who will be limited to 10 minutes, perhaps you could
ask it off-line to the professor after we adjourn.
Thank you very much,
Professor, for taking the time to present a very detailed brief
before us. With that, the committee stands recessed-
McLeod: Mr Chair, before you recess, I was asked to hold
any questions for the researcher until the end of the
Chair: Oh, I thought you were simply going to hand them
to him. Did you want to-
McLeod: May I very quickly read them into the
Chair: You may, sure.
McLeod: I don't think they're onerous, but I do respect
the fact that if the research officer is tied up in hearings for
the next three and a half solid days that we wouldn't receive
responses to these until after we've completed the public
The first was a question
for Cancer Care Ontario-and I will give these in writing to the
researcher. Are there any limitations now in their ability to
access data or to protect confidentiality and, second, in the
absence of Ontario legislation, would Cancer Care Ontario be
under the federal privacy legislation?
Second, relating to the
HIV/AIDS brief which refers to model legislation, could we get a
copy of that particular model that they had referenced?
Third, does the federal
legislation conflict with health professions regulation
legislation in Ontario? That's really a question around the issue
that we've heard repeatedly today about the HPRAC legislation,
and we've talked a lot about it in relationship to Bill 159, but
if it's possible to get some sense of its relationship to the
federal legislation if there is any place where the federal
legislation applies to the regulated health professions in
Fourth, are there
precedents in Ontario for correcting a health record?
Fifth, does the federal
privacy legislation apply to physicians' offices? You will recall
that the federal Privacy Commissioner did indicate that
physicians' offices would be caught by the federal legislation in
the absence of an Ontario bill. I believe there's some
disagreement in the Ontario Ministry of Health about that, and
any clarification we could get would be very helpful.
Last, what legislation
governs the length of time that health records must be
Lankin: I have a couple of questions, if they could be
followed up with the specific organizations. Cancer Care
Ontario-I have the same question as Ms McLeod. In addition, we
heard in another presentation today of a circumstance when a
cancer patient was called by someone on behalf of Cancer Care
Ontario to ask them if they would be willing to participate in a
research study. In and of itself, it appears there's a breach of
confidentiality right up front and I wondered if they could
address within their own procedures, is it possible that
happened, or how would they explain that?
Second, to the Toronto
Academic Health Science Council-
Chair: Ms Lankin, in fairness, I wonder if the group
that made that presentation might be canvassed, because, for
example, if it was their doctor phoning back I suspect there's no
issue of disclosure there. If the doctor was to phone back and
say, "I was wondering if you would like to participate in this
Ms Lankin: But the
testimony before us was that somebody from Cancer Care Ontario
Chair: But in fairness to the researcher, perhaps the
first step should be to see what definition we can get there
about whether we're talking about a survey company or a-
Lankin: The presenting group was the Registered
Practical Nurses Association of Ontario. So we might do that
first step of clarification then, if appropriate.
Second, to the Toronto
Academic Health Science Council. Later on in the afternoon we had
a presentation from Dr Speers, which included a copy of the
Helsinki declaration with respect to medical research protocol. I
wondered if we could ascertain from the Toronto Academic Health
Science Council whether that is a standard that is commonly used
in university ethics committees and/or whether it is something
they think is appropriate-too restrictive, not restrictive
enough-and whether that might be something the committee looks at
building reference to in legislation.
Chair: If there are no other questions, the committee
stands adjourned until 9 o'clock tomorrow morning.