Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC). We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.
CITATION STYLE
McGuire, A. L., Majumder, M. A., Villanueva, A. G., Bardill, J., Bollinger, J. M., Boerwinkle, E., … Cook-Deegan, R. (2019). Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons. Journal of Law, Medicine and Ethics, 47(1), 12–20. https://doi.org/10.1177/1073110519840480
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