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. 2019 Mar;47(1):51-61.
doi: 10.1177/1073110519840484.

The Role of Participants in a Medical Information Commons

Mary A Majumder  1 , Juli M Bollinger  1 , Angela G Villanueva  1 , Patricia A Deverka  1 , Barbara A Koenig  1
Affiliations

The Role of Participants in a Medical Information Commons

Mary A Majumder et al. J Law Med Ethics. 2019 Mar.

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.

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References

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    1. For more on MIC structure and characteristics, see Cook-Deegan R et al. , “Introduction: Sharing Data in a Medical Information Commons,” Journal of Law, Medicine & Ethics 47, no. 1 (2019): 7–11; Bollinger, supra note 2; Villanueva AG, Cook-Deegan R, Koenig BA, and Deverka PA et al. , “Characterizing the Biomedical Data-Sharing Landscape,” Journal of Law, Medicine & Ethics 47, no. 1 (2019): 21–30; and Majumder MA, Zuk PD, and McGuire AL, “Medical Information Commons,” in Hudson B, Rosenbloom J, and Cole D, eds., Routledge Handbook of the Study of the Commons (Rout-ledge, Forthcoming; 2019).

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