The Role of Participants in a Medical Information Commons

Mary A Majumder; Juli M Bollinger; Angela G Villanueva; Patricia A Deverka; Barbara A Koenig

doi:10.1177/1073110519840484

The Role of Participants in a Medical Information Commons

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

Authors

Mary A Majumder¹, Juli M Bollinger¹, Angela G Villanueva¹, Patricia A Deverka¹, Barbara A Koenig¹

Affiliation

¹ Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Juli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Patricia A. Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses on demonstrating the value of genomic sequencing for health systems and policymakers. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. She serves as Director of the UCSF Program in Bioethics. Previously, Prof. Koenig was the founding executive director of the Center for Biomedical Ethics at Stanford University; she created and led the Bioethics Research Program at the Mayo Clinic in Rochester, Minn.

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.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Biomedical Technology / standards*
Humans
Information Dissemination*
Medical Informatics / standards*
Policy Making
Stakeholder Participation / psychology*

Grants and funding

R01 HG008918/HG/NHGRI NIH HHS/United States