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Counsel, Public Interest Advocacy Centre, Ottawa, Ontario
There has been a great deal of polemic surrounding the federal government’s Bill C-6 and its application to the health care system. Let’s get a few things straight.
First, the Bill applies only to “information about an identifiable individual”. Thus, irreversibly anonymized information is not covered. Second, it applies only in the context of commercial activities, and explicitly permits the disclosure to governments of personal information where “requested for the purpose of administering any law of Canada or a province”. Third, it applies initially only to the federally regulated sphere of activity, and allows provinces three years within which to legislate “substantially similar” standards in the health care sector.
A number of concerns have been raised about the Bill’s impact on health care. Some have argued that the Bill “would require the express, informed consent to the collection, use and/or disclosure of personal health information at each step in the delivery of integrated health services”. This is not true. The Bill would not require explicit consent where the individual would reasonably expect such collection, use or disclosure as part of the transaction. Thus, for example, pharmacists can assume implicit consent to the disclosure of patient information to the prescribing physician, or to the patient’s insurance company, for the purpose of delivering the service requested. But they must obtain explicit consent of patients to any secondary uses of their personal information, such as its sale to drug manufacturers for marketing purposes.
It has also been argued that the Bill requires the unrealistic separation of commercial and non-commercial health activities, and that it will lead to a “two-tiered” system under which privacy is better protected in the private sector than in the public sector. While it is true that the Bill applies only to commercial activities, and that health care activities cannot be neatly divided into commercial and non-commercial categories, this does not mean that the two need to be separated, or that non-commercial activities will be subject to a lower standard.
First, Bill C-6 sets out a set of reasonable principles of fair information practice, which should be adopted by all health care organizations, public and private, in any case. Second, the Bill requires that organizations subject to it use contractual or other means to ensure that third parties with whom they share personal information provide a comparable level of protection. Thus, health care organizations not subject to the Bill will be required to comply with it whenever they collaborate with organizations subject to the Bill in the delivery of health care.
The real debate over Bill C-6 and health care is about the appropriateness of informed consent as the principle upon which to base rules for the sharing of personal health information. With some notable exceptions (physicians, dentists, and nurses), many of those involved in health research and administration, as well as primary care, seem to oppose this principle, preferring a regime based upon “consistent use”, or the “best interests of the patient”, as determined by someone other than the patient. This is the heart of the controversy now playing out before the Senate.
According to the Health Minister’s Advisory Council on Health Infostructure, “informed consent should be the basis for sharing [personal health] information” (p.11), and “patients should be able to exercise control over what portion of their electronic record is seen by other professionals and providers” (p.3-6). This reflects the position taken by citizens’ groups, who are calling for quick passage of Bill C-6 and no exemption for health information. As the groups point out, “Canadians deserve to know and to control who has access to their personal health records and for what purposes such access is granted”. If patients fear that their personal information may be shared with others without their consent, they will be reluctant to seek care and will withhold critical information from their doctors. The quality of care will decline, and health costs will rise.
Bill C-6 represents a challenge to all those involved in the delivery of health care in Canada. It sets a new standard for the sharing of personal health information now that we have entered a new age of information technology with all the opportunities it presents for misuse of personal health information. It’s a standard that gives control back to the patient, recognizing that times have changed and that the paternalistic model of “provider knows best” is no longer appropriate when it comes to the sharing of medical records. Let’s get on with it, before abusive information practices become any further entrenched.