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- Title
The Role of Participants in a Medical Information Commons.
- Authors
Majumder, Mary A.; Bollinger, Juli M.; Villanueva, Angela G.; Deverka, Patricia A.; Koenig, Barbara A.; Cook-Deegan, Robert; McGuire, Amy L.
- Abstract
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.
- Subjects
UNITED States; PARTICIPANT-researcher relationships; INFORMATION sharing; MEDICAL informatics; INFORMATION commons; BIOLOGICAL research; MEDICAL research; BIOETHICS; DATABASE management; HEALTH; INFORMED consent (Medical law); INTERVIEWING; RESEARCH methodology; HEALTH policy; SOCIAL justice; INFORMATION resources; MEDICAL coding; STAKEHOLDER analysis
- Publication
Journal of Law, Medicine & Ethics, 2019, Vol 47, Issue 1, p51
- ISSN
1073-1105
- Publication type
Article
- DOI
10.1177/1073110519840484