The landscape of rules governing access to personal information for health research: a view from afar.

What is asked, or should be asked, of the law student is not that he learn, by heart, and in all their detail, all the rules in force during his time as student: that will be of little service to him in his later professional life when many of those rules will have changed. Of far greater importance to the student will be a knowledge of the structure within which the rules and concepts are organized, the meaning of these categories and concepts, and the relationship of the rules among themselves. The legislators may, indeed, with a stroke of the pen modify the actual legal rules, but these other elements and features nonetheless subsist. They cannot be so arbitrarily changed because they are intimately linked to our civilization and ways of thinking. The legislators can have no more effect on them than upon our language or our reasoning process. (1) Introduction How can we uphold the individual right of privacy in respect of personal information, while also allow necessary access to that information for bona fide health research in order to improve the health of Canadians and their health services? How can we develop a coherent set of norms that respects Canadians' values and strikes a socially acceptable balance between them? How can we ensure that these norms are workable in practice and sufficiently compatible to govern transfers of data across different jurisdictions and/or sectors of activity? Such has been identified as one of the major public policy challenges in the current context of health care reform. The Senate Standing Committee on Social Affairs, Science and Technology recently described the challenge as follows: The right to privacy and confidentiality of personal health information is a very important value for Canadians. Now more than ever, Canadians need reassurance that their privacy and confidentiality will be respected in this era of rapidly advancing technology. However, the quality of their health and health care is also a value that Canadians cherish very dearly. Health care providers, health care managers and health researchers need access to personal health information to improve the health of Canadians, strengthen health services and sustain a high quality health care system. The present challenge for Canadians is to set acceptable limits around the right to privacy, on the one hand, and the need for access to information (by health care providers, managers and researchers) on the other, in order to achieve an appropriate balance between them. (2) Similarly, Commissioner Roy J. Romanow Q.C. echoed these concerns when he articulated the challenge in these terms: Some might wonder why a chapter on information would figure so prominently and be placed at the beginning of a report on the future of Canada's health care system. The answer is that leading-edge information, technology assessment and research are essential foundations for all of the reforms outlined in subsequent chapters of this report. Furthermore, health research--especially biomedical and scientific research--is an increasingly important component of Canada's knowledge economy and a source of high-skilled, well-paid employment for thousands of Canadians ... With better information management and technology in place, researchers can assess the impact and value of different treatments and approaches to delivering health care services in addition to developing and testing new discoveries and cures ... Researchers and policy-makers would have access to aggregate data compiled through the electronic health record system. These data could be extracted generically for health research purposes, without being linked to any individual electronic health record. The Commission understands that researchers would, in many cases, prefer to have access to person-oriented health information to allow them to track certain illnesses or health-related factors over time. …

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