Importance of participant-centricity and trust for a sustainable medical information commons

Authors

Amy L. McGuire, Baylor College of Medicine, USA.
Mary A. Majumder, Baylor College of Medicine, USA.
Angela G. Villanueva, Baylor College of Medicine, USA.
Jessica Bardill, Baylor College of Medicine, USA.
Juli M. Bollinger, Baylor College of Medicine, USA.
Eric Boerwinkle, University of Texas Health Science Center, USA.
Tania M. Bubela, Simon Fraser University, CanadaFollow
Patricia A. Deverka, Geisinger National Precision Health, USA.
Barbara J. Evans, University of Houston Law Center, USA.
Nanibaa' A. Garrison, Seattle Children's Hospital, USA.

Document Type

Article

Department

Office of the Provost

Abstract

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC). We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Comments

This work was published before Tania joined Aga Khan University.

Publication (Name of Journal)

Journal of Law, Medicine & Ethics

DOI

10.1177/1073110519840480

Recommended Citation

McGuire, A. L., Majumder, M. A., Villanueva, A. G., Bardill, J., Bollinger, J. M., Boerwinkle, E., Bubela, T. M., Deverka, P. A., Evans, B. J., Garrison, N. A. (2019). Importance of participant-centricity and trust for a sustainable medical information commons. Journal of Law, Medicine & Ethics, 47(1), 12-20.
Available at: https://ecommons.aku.edu/provost_office/736