Review of the Personal Information Protection and Electronic Documents Act (PIPEDA) : CMA's Presentation to the House of Commons Standing Committee on Access to Information, Privacy and Ethics - December 13, 2006
The Canadian Medical Association (CMA) is pleased to be here today to participate in your review of the Personal Information Protection and Electronic Documents Act, or PIPEDA.
The CMA has had a long-standing interest in privacy-related matters, including enhancing measures to protect and promote the privacy of health information. We welcome the opportunity to share our policies and thoughts on these vital matters.
As a pediatric oncologist from Winnipeg and Chair of the CMA's Committee on Ethics, I come here today with one bottom line: Physicians have always- and continue to - take their patients' privacy very seriously. This is the cornerstone of the special bond between patients and their doctor and has been thus since the time of Hippocrates. In recognition of the importance of privacy, the CMA has produced such documents as the CMA Code of Ethics and the CMA Health Information Privacy Code to guide our more than 64,000 members across the country. These documents existed before the federal government introduced PIPEDA.
It is out of our concern for protecting and ensuring the privacy of medical information that we speak to you today.
There are three specific areas which we would like to raise:
1) Recognition in law of the unique nature of health care;
2) Physician information as "work product"; and
3) Emerging Privacy and Health information issues.
1. Recognition in law of the unique nature of health care
I would like to highlight the importance of recognizing in law the special circumstances of protecting health information. In fact, when PIPEDA was first being debated, CMA posed questions about the scope of the Act and was told that the legislation, originally designed for commerce and the private sector, would not capture health information. We were also told that even if it did, PIPEDA wouldn't change how we practiced medicine.
The passing of PIPEDA generated enough concern and uncertainty that government agreed to delay its application to health for 3 years. For example, PIPEDA failed to clarify the issue of implied consent for the sharing of patient information between health professionals providing care.
For example, when the family physicians says to a patient "I'm going to send you to see an oncologist to run some tests" and the patient agrees and follows that course of action, then clearly there is "consent" to the sharing of their health information with others. As an oncologist I assume there is consent to send the test results to other specialists that I may need to consult in order to advance the patient's care in a timely fashion. This, however, needed to be addressed before PIPEDA was applied to health care.
The delayed application allowed the federal government and health care community to work together and develop a set of guidelines for how PIPEDA would be applied. The resulting PIPEDA Awareness Raising Tools, known as PARTs, contain a series of questions and answers that make up guidelines for health care providers. They answered many of our concerns, provided necessary definitions and allowed for the implied consent model to continue to be used within the circle of care. The CMA applauds the government for this collaborative effort and the resulting guidelines have been used by health care providers ever since.
However, we remain concerned that the PARTs guidelines have no legal status. This limitation creates a degree of uncertainty that the CMA would like this legislative review to see addressed by ensuring the PARTs series of questions and answers are referenced in PIPEDA.
In addition to participating in the PARTS initiative, since PIPEDA's implementation, the CMA has designed practical tools for physicians and patients:
* adopted the CMA policy Principles Concerning Physician Information to address the importance of protecting the privacy of physician information;
* produced Privacy in Practice: a handbook for Canadian physicians to help physicians maintain best practices in the protection of patient health information; and
* created the PRIVACYWIZARD(tm) designed to help physicians record their current privacy practices, communicate these to patients and identify possible areas for enhancement.
2. Physician Practice Information as "Work Product"
I referred earlier to CMA's Policy document on physician information. The CMA strongly believes that physicians have legitimate privacy concerns about the use by third parties of information - such as prescribing and other practice data for commercial purposes. Currently deemed "work product" this information can be collected, used and disclosed without consent.
We feel PIPEDA inadequately protects this information. We recognize that it is information generated out of the patient-physician relationship. We disagreed with findings of the previous Privacy Commissioner that physician prescribing information is not subject to PIPEDA's privacy protection provisions for "personal information". The CMA has consistently advocated that physician prescribing data and other practice information is personal information and appeared as an intervener in a Federal Court review of this issue that was ultimately settled by the main parties.
Also, insufficient regard for the privacy of prescribing and other physician data could have a negative impact on the sanctity of the physician-patient relationship. Patients confide highly sensitive information to physicians with the expectation this information will be kept in the strictest confidence. This expectation exists because they know that physicians are under ethical and regulatory dictates to safeguard their information and that physicians take this responsibilities very seriously. The perceived and indeed actual loss of control by physicians over information created in the patient encounter, such as prescribing data, could undermine the confidence and faith of our patients that we are able to safeguard their health information. This concern is not hypothetical.
For physicians, so called "work product" information also encompasses practice patterns such as discharge rates, referral rates, billing patterns, hospital length of stays, complaints, peer review results, mortality and re-admittance rates. With the advent of electronic medical records and growth in pay-for-performance and outcome-based incentive programs for physicians, there is an enormous potential for the resulting physician "performance" data or "work product" to be "mined" by other parties and used to influence performance review (traditionally the purview of the medical licensing authorities) as well as decisions around treatment funding and system planning.
The lack of transparency in the sale and compilation of physicians' prescribing and other performance data means that physicians might find themselves to be the unwitting subject and targets of marketing research. We believe practice decisions must be made in the best interest of patients and not the bottom-line interests of businesses and marketers.
CMA therefore recommends a legislative change to include physician information as personal information under PIPEDA. Legislation in Quebec provides an example that is consistent with CMA's approach since it requires regulatory oversight and gives individuals the right to opt out of the collection, use and disclosure of "professional" information.
3. Emerging Privacy and Health information issues
With budgetary and demographic pressures, our health care system is under strain and physicians are striving to deliver timely, quality care to patients, often with competing and multiple demands. Physicians are therefore seeking assurances from law makers that any amendments to PIPEDA will take into account the potential impact on them and their patients. Therefore, we seek assurances that:
* health care is recognized as unique when it comes to the disclosure of personal information before the transfer of a business (one physician transferring his/her practice to another) because it is regulated at the provincial level through the appropriate licensing body. As a general rule, physicians must give notice to the public, whether via a newspaper ad or a notice in the office about the change in practice.
* the federal government will consider the impact of the trans-border flow of personal information on telehealth and Electronic Health Record activities. Communications between patients and physicians via electronic means are likely to increase and to move across geographic boundaries with increasing frequency; and
* the federal government will study the issue of international cross border data flows, particularly among Canadian researchers who receive funding from US drug companies. These arrangements should be governed by Canadian law (PIPEDA) not American (HIPAA or the US Patriot Act).
In closing, the privacy protection of personal health information is a responsibility that my colleagues and I do not take lightly. It is a key pillar of our relationship with Canadians, they not only expect it-they deserve it. I look forward to taking questions from Committee members.
Canadian Medical Association Ottawa, December 13, 2006
In this submission to the House of Commons Standing Committee on Justice and Human Rights, the CMA’s feedback is focused on three of the legislative objectives of Bill C-14, given their relevance to the CMA’s Principles-based Recommendations for a Canadian Approach to Assisted Dying.
On behalf of its more than 83,000 members and the Canadian public, the CMA performs a wide variety of functions. Key functions include advocating for health promotion and disease/injury prevention policies and strategies, advocating for access to quality health care, facilitating change within the medical profession, and providing leadership and guidance to physicians to help them influence, manage and adapt to changes in health care delivery.
i) Robust Safeguards
First, the CMA supports the legislative objective of ensuring a system of robust safeguards to the provision of medical assistance in dying. The safeguards proposed by Bill C-14 include: patient eligibility criteria, process requirements to request medical assistance in dying, as well as monitoring and reporting requirements.
The CMA is a voluntary professional organization representing the majority of Canada’s physicians and comprising 12 provincial and territorial divisions and over 60 national medical organizations.
ii) Consistent, Pan-Canadian Framework
Second, the CMA supports the legislative objective that a consistent framework for medical assistance in dying in Canada is desirable. In addition to robust safeguards, key measures proposed by Bill C-14 support the promulgation of a consistent framework across jurisdictions include legislating definitions for “medical assistance in dying” and “grievous and irremediable condition.”
The CMA’s Principles-based Recommendations reflect on the subjective nature of what constitutes “enduring and intolerable suffering” and a “grievous and irremediable condition” as well as the physician’s role in making an eligibility determination.
iii) End-of-Life Care Coordination System
Thirdly, the CMA supports the objective to develop additional measures to support the provision of a full range of options for end-of-life care and to respect the personal convictions of health care providers. The fulfilment of these commitments with federal non-legislative measures will be integral to supporting the achievement of access to care, respecting the personal convictions of health care providers, and developing a consistent, pan-Canadian framework.
The CMA encourages the federal government to rapidly advance its commitment to engage the provinces and territories in developing a pan-Canadian end-of-life care coordinating system. It will be essential for this system to be in place for June 6, 2016. At least one jurisdiction has made a system available to support connecting patients with willing providers. Until a pan-Canadian system is available, there will be a disparity of support for patients and practitioners across jurisdictions.
iv) Respect Personal Convictions
Finally, it is the CMA’s position that Bill C-14, to the extent constitutionally possible, must respect the personal convictions of health care providers. In the Carter decision, the Supreme Court of Canada emphasized that any regulatory or legislative response must seek to reconcile the Charter rights of patients wanting to access assisted dying and physicians who choose not to participate in medical assistance in dying on grounds of conscientious objection.
The CMA’s Principles-based Recommendations achieves an appropriate balance between physicians’ freedom of conscience and the assurance of effective and timely patient access to a medical service. From the CMA’s significant consultation with our membership, it is clear that physicians who are comfortable providing referrals strongly believe it is necessary to ensure the system protects the conscience rights of physicians who are not.
While the federal government has achieved this balance with Bill C-14, there is the potential for other regulatory bodies to implement approaches that may result in a patchwork system. The CMA’s position is that the federal government effectively mitigate this outcome by rapidly advancing the establishment of the pan-Canadian end-of-life care coordinating system.
CMA Supports Cautious Approach for “Carter Plus”
The CMA must emphasize the need for caution and careful study in consideration of “Carter Plus”, which includes: eligibility of mature minors, eligibility with respect to sole mental health conditions, and advance care directives. The CMA supports the federal government’s approach not to legislate these issues, rather to study them in greater detail.
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