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 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