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

by Evans, Barbara J. , Rai, Arti K. , Bollinger, Juli M. , Garrison, Nanibaa' A. , Watson, Michael S. , Lambright, J. Mark , Boerwinkle, Eric , Kahn, Scott D. , Villanueva, Angela G. , Rodriguez, Laura L. , Glazer, David , Mattison, John E. , Terry, Sharon F. , Thorogood, Adrian M. , Bardill, Jessica , Greely, Henry T. , Goldstein, Melissa M. , Majumder, Mary A. , Cook-Deegan, Robert , McGuire, Amy L. , Deverka, Patricia A. , Koenig, Barbara A. , Knoppers, Bartha M. , Bubela, Tania , O'Donnell, Christopher , Simoncelli, Tania , Wilbanks, John T.

in Big Data / Bioethics / Clinical information / Common lands / Community / Community Participation / Credibility / Decision making / Design / Disease / Genetic Information Nondiscrimination Act 2008-US / Genomics / Humans / Information Dissemination / Learning commons / Medical Informatics - standards / Medical research / Ostrom, Elinor (1933-2012) / Privacy / Stakeholder Participation / Sustainability / Trust

2019

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

2019

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

2019

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Journal Article

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

Evans, Barbara J.,

Rai, Arti K.,

Bollinger, Juli M.,

Garrison, Nanibaa' A.,

Watson, Michael S.,

Lambright, J. Mark,

Boerwinkle, Eric,

Kahn, Scott D.,

Villanueva, Angela G.,

Rodriguez, Laura L.,

Glazer, David,

Mattison, John E.,

Terry, Sharon F.,

Thorogood, Adrian M.,

Bardill, Jessica,

Greely, Henry T.,

Goldstein, Melissa M.,

Majumder, Mary A.,

Cook-Deegan, Robert,

McGuire, Amy L.,

Deverka, Patricia A.,

Koenig, Barbara A.,

Knoppers, Bartha M.,

Bubela, Tania,

O'Donnell, Christopher,

Simoncelli, Tania,

Wilbanks, John T.

2019

Overview

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.

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Publisher

SAGE Publications,Cambridge University Press

Subject

Big Data

/ Bioethics

/ Clinical information

/ Common lands

/ Community

/ Community Participation

/ Credibility