Howard Brunt
I was delighted to read the editorial regarding the future of health data, privacy and research in B.C. (“Health data could save our lives,” Dec. 15).
I had the pleasure of attending the special access-to-health-data workshop mentioned in the editorial, which was organized by the privacy commissioner. The commissioner asked me to make some opening remarks about what the challenges and opportunities are with respect to improving B.C.’s health-data access system from the university sector’s perspective, which I would like to share here.
To begin with, it is not clear to me that we have a health-data access “system” in B.C.; at least, one that is sufficiently organized, transparent and effective.
That said, there has been some progress in responding to a number of the issues identified through the recent Ministry of Health health-data breach. The ministry’s investigation and subsequent reviews by the privacy commissioner have provided painful lessons for public servants, researchers, universities and the public. Those reviews demonstrated that the state of our provincial data access and privacy system is woefully inadequate.
The good news is that the investigations have also increased our collective interest in turning things around.
We are blessed in B.C. with some of the finest universities and health researchers in the world, and they are eager to work on pressing health-care issues. Universities exist to create and disseminate knowledge, with the goal of benefiting society. Researchers are driven by curiosity, passion and the desire to make a difference. Their incentives and rewards are largely determined and delivered through a rigorous peer-review system that prizes high-quality results and impact. While the evidence of success for researchers has traditionally been determined through the quality of their publications and disciplinary presentations, there has been a major shift in focus toward assessing and rewarding research based on its impact on improving public policy, programs and practice.
The collection, analysis and storage of data is the lifeblood of research. Without it, nothing happens. A researcher can have a relevant and important question to answer, outstanding research design and analytic skills and the ability to communicate results clearly, but without data, nothing can be done.
The major concern that researchers have with health-data access in B.C. is that it is a slow, unreliable and cumbersome process, and that there is a lack of transparency in how requests are adjudicated. The lack of reliable access affects researchers’ ability to secure grants, support students and fulfil contractual obligations, and puts a chill on researchers considering entry to this important arena.
Most important, these problems have resulted in missed opportunities to make solid contributions to the health of British Columbians through research.
The Ministry of Health faces enormous pressures to meet its core mandate to deliver safe, high-quality health care to British Columbians. Having it also try to manage the complexities of health-data access for research has proven problematic.
Despite some improvements in the ministry, we now have a public-data access system in B.C. that is far more adversarial, complex, opaque, inefficient and dysfunctional than any of us from government, universities, health-care providers and the public want or deserve. We all have a stake in improving health-data access and utilization; the state of our expensive and overburdened health-care system demands it. The costs in terms of money, administrative burden and human misery of not addressing the problem of underutilization of health research for public decision-making are too high.
So what should be done? From the universities’ and researchers’ perspectives, there would be advantages to having a single organization (e.g. Public Data B.C.) within or, preferably, at arm’s length from government that ensured all taxpayer-funded data, not just health data, was both compliant with privacy requirements and made available to researchers in a timely and transparent manner. This new entity would provide a professional and comprehensive approach to ensuring research was conducted in full compliance with evolving privacy regulations, greatly reducing the uncertainty and administrative burden we now experience.
This would encourage the evolution of strong collaborations among government decision-makers, university researchers and a variety of non-governmental organizations for the purposes of making well-informed public policy and designing effective health-care programs and services.
The current “system” of data access is fragmented, inefficient and expensive. To adapt a saying from an old bumper sticker: “If you think the cost of providing a high-quality data-access system to support public policy research is high, just try the alternative.”
Dr. Howard Brunt, an epidemiologist and community health researcher, is the vice president of research at the University of Victoria and a professor in the faculty of human and social development. He was the inaugural chairman of the Tri-Council Panel on Research Ethics, which developed and oversees Canada’s national research ethics policy.
