Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons
Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons
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DOI：
10.1177/1073110519840480
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发表时间：
2019-03-01
影响因子：
2.1
通讯作者：
Cook-Deegan, Robert
中科院分区：
文献类型：
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作者：
McGuire, Amy L.;Majumder, Mary A.;Cook-Deegan, Robert
利用对现有数据共享计划的景观分析，对专家利益相关者的深入采访，以及美国各地社区咨询小组的公众审议，我们描述了不断发展的医学信息共享（MIC）的特点。我们确定以参与者为中心和可信度的MIC的最重要的功能，并讨论了那些寻求创建一个可持续的，有用的，广泛使用的链接资源的研究和其他目的的收集的影响。
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.