The Role of Participants in a Medical Information Commons

Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a “Medical Information Commons” (MIC). We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participa...

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Bibliographic Details
Published inThe Journal of law, medicine & ethics Vol. 47; no. 1; pp. 51 - 61
Main Authors Majumder, Mary A., Bollinger, Juli M., Villanueva, Angela G., Deverka, Patricia A., Koenig, Barbara A.
Format Journal Article
LanguageEnglish
Published Los Angeles, CA SAGE Publications 01.03.2019
Cambridge University Press
Subjects
Bioethics
Biomedical research
Biomedical Technology - standards
Consent
Humans
Information Dissemination
Information sharing
Information sources
Interviews
Laboratories
Learning commons
Medical Informatics - standards
Medical research
NGOs
Nongovernmental organizations
Policy Making
Stakeholder Participation - psychology
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Summary:Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a “Medical Information Commons” (MIC). We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.
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ISSN:1073-1105
1748-720X
DOI:10.1177/1073110519840484