TY - JOUR
T1 - The Role of Participants in a Medical Information Commons
AU - Majumder, Mary A.
AU - Bollinger, Juli M.
AU - Villanueva, Angela G.
AU - Deverka, Patricia A.
AU - Koenig, Barbara A.
N1 - Publisher Copyright:
© 2019 American Society of Law, Medicine & Ethics.
PY - 2019/3/1
Y1 - 2019/3/1
N2 - 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.
AB - 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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U2 - 10.1177/1073110519840484
DO - 10.1177/1073110519840484
M3 - Article
C2 - 30994075
AN - SCOPUS:85064986519
SN - 1073-1105
VL - 47
SP - 51
EP - 61
JO - Journal of Law, Medicine and Ethics
JF - Journal of Law, Medicine and Ethics
IS - 1
ER -