Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons

Patricia A. Deverka; Dierdre Gilmore; Jennifer Richmond; Zachary Smith; Rikki Mangrum; Barbara A. Koenig; Robert Cook-Deegan; Angela G. Villanueva; Mary A. Majumder; Amy L. McGuire

doi:10.1177/1073110519840486

Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons

Patricia A. Deverka, Dierdre Gilmore, Jennifer Richmond, Zachary Smith, Rikki Mangrum, Barbara A. Koenig, Robert Cook-Deegan, Angela G. Villanueva, Mary A. Majumder, Amy L. McGuire

Future of Innovation in Society, School for the (SFIS)

Research output: Contribution to journal › Article › peer-review

11 Scopus citations

Abstract

A medical information commons (MIC) is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

Original language	English (US)
Pages (from-to)	70-87
Number of pages	18
Journal	Journal of Law, Medicine and Ethics
Volume	47
Issue number	1
DOIs	https://doi.org/10.1177/1073110519840486
State	Published - Mar 1 2019

ASJC Scopus subject areas

Issues, ethics and legal aspects
Health Policy

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Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons

Abstract

ASJC Scopus subject areas

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