"...too often the prospect of an honest and transparent debate is thwarted by the failure to disclose ulterior motives."
Canada is at a crossroads in the evolution of its health information agenda. As a country we have a long history of accumulating and analyzing administrative data. While a great deal of insight has emerged from these data and their uses, there are limits to what they can reveal and, more importantly, to what improvements they can support. The information revolution currently underway has the potential to improve practice, resource allocation, social justice, and health outcomes. But the potential is at risk on several grounds, which is why it is important to identify the challenges to data access and address them transparently and cogently.Debates surrounding the design of health information systems and their use are grounded in culture. Health information is contested ground. Coming from different cultures, policy-makers, practitioners, and researchers often have different views on the balance between opportunity and risk, and intended and unintended consequences of data use. Citizens are by and large bystanders in these cultural clashes, but from time to time various constituencies conduct surveys or polls to coat their perspectives in the sheen of democratic legitimacy. However, it is both easy and tempting to engineer the desired results of a public consultation. Unfortunately, too often the prospect of an honest and transparent debate is thwarted by the failure to disclose ulterior motives, and by the use of language that conceals rather than illuminates one’s true position. Usually, those opposed to a liberal policy of data access use the language of privacy, consent, legitimacy, potential harm, and rights. Rarely are the issues cast in terms of interests, power, clinical autonomy, accountability, and control—yet these factors are as integral to the debate as the real and nuanced concerns about privacy and potential harm.
Excerpt from a chapter written by Steven Lewis "Securing a bright health information future: Context, culture, and strategies."
From the book: DATA DATA EVERYWHERE: Access and Accountability? Edited by Colleen M. Flood.
April 27, 2011
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