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What is a Medical Information Commons?

Juli M Bollinger1, Peter D Zuk1, Mary A Majumder1

  • 1Juli 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. Peter D. Zuk is a Research Associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and Ph.D. candidate in Philosophy at Rice University (both Houston, TX). 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. Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Rebecca L. Hsu is a research coordinator with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.

The Journal of Law, Medicine & Ethics : a Journal of the American Society of Law, Medicine & Ethics
|April 18, 2019
PubMed
Summary

Expert stakeholders support a medical information commons (MIC) for research, aligning with national visions. However, differing views on clinical use and data access require further investigation for policy and technology solutions.

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Area of Science:

  • Health Informatics
  • Biomedical Research
  • Health Policy

Background:

  • A 2011 National Academies of Sciences report proposed an "Information Commons" and "Knowledge Network" to advance biomedical research and clinical care.
  • The concept aims to create a shared infrastructure for medical data and knowledge.

Purpose of the Study:

  • To examine expert stakeholder perspectives on the governance, access, data collection, and privacy within a potential medical information commons (MIC).
  • To assess alignment between stakeholder views and the National Academies of Sciences' vision for an information commons in the medical field.

Main Methods:

  • Qualitative study involving interviews with 41 expert stakeholders.
  • Analysis of stakeholder attitudes towards key aspects of a medical information commons.

Main Results:

  • Stakeholder attitudes generally align with the National Academies of Sciences' vision for an information commons.
  • Significant differences in opinion emerged regarding the clinical application and data access policies for a medical information commons.

Conclusions:

  • While there is consensus on the foundational concept of a medical information commons, specific challenges related to clinical integration and access need resolution.
  • Further research into policy and technological solutions is warranted to address the identified differences in opinion and facilitate the development of a functional medical information commons.