| Literature DB >> 30994075 |
Mary A Majumder1, Juli M Bollinger1, Angela G Villanueva1, Patricia A Deverka1, Barbara A Koenig1.
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.Entities:
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Year: 2019 PMID: 30994075 PMCID: PMC6738931 DOI: 10.1177/1073110519840484
Source DB: PubMed Journal: J Law Med Ethics ISSN: 1073-1105 Impact factor: 1.718