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Book Detail
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Sharing Linked Data for Health Research:
Toward Better Decision Making
Adams, Carolyn
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Publisher: Cambridge University Press Affiliation: Macquarie University Law School Dimensions: 9.0 x 0.75 x 6.0 in
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Synopsis:
Health research around the world relies on access to data, and much of the most valuable, reliable, and comprehensive data collections are held by governments. These collections, which contain data on whole populations, are a powerful tool in the hands of researchers, especially when they are linked and analyzed, and can help to address "wicked problems" in health and emerging global threats such as COVID-19. At the same time, these data collections contain sensitive information that must only be used in ways that respect the values, interests, and rights of individuals and their communities. Sharing Linked Data for Health Research provides a template for allowing research access to government data collections in a regulatory environment designed to build social license while supporting the research enterprise. Provides a comprehensive review of the human rights, ethical and legal decision-making frameworks that regulate the sharing of linked data for research Includes detailed recommendations for improving the regulation of research using linked data Compares the practice and process in three jurisdictions - Australia, Canada, and the UK - that have well established data linkage infrastructure and programs
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