Dissemin is shutting down on January 1st, 2025

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Cambridge University Press, Journal of Law, Medicine and Ethics, 1(47), p. 12-20, 2019

DOI: 10.1177/1073110519840480

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Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons

This paper is made freely available by the publisher.
This paper is made freely available by the publisher.

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Abstract

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.