Toward a National Framework for the Secondary Use of Health Data: An American Medical Informatics Association White Paper
- Charles Safran,
- Meryl Bloomrosen,
- WEdward Hammond,
- Steven Labkoff,
- Suzanne Markel-Fox,
- Paul C Tang,
- Don E DetmerWith input from the expert panel (see Appendix A)
- Affiliations of the Authors: Past-Chairman, American Medical Informatics Association, Associate Clinical Professor of Medicine, Harvard Medical School/Beth Israel Deaconess Medical Center (CS), Boston, MA; Associate Vice President, American Medical Informatics Association (MB), Bethesda, MD; Professor, Fuqua School of Business, Duke University (WEH), Durham, NC; Director, Healthcare Informatics, Pfizer, Inc. (SL) NY, NY; Director, Data Exploration Sciences, Glaxo- SmithKline (SM-F), King of Prussia, PA; Chairman of the Board, American Medical Informatics Association, Bethesda, MD, Chief Medical Information Officer, Palo Alto Medical Foundation (PCT), Palo Alto, CA; President and CEO, American Medical Informatics Association, Bethesda, MD, Professor of Medical Education, University of Virginia (DED), Charlottesville, VA
- Correspondence and reprints: Meryl Bloomrosen, MBA, American Medical Informatics Association, 4915 St. Elmo Avenue, Suite 401, Bethesda, MD 20814; Tel: (301) 657-1291; e-mail: < >
- Received 11 September 2006
- Accepted 9 October 2006
Secondary use of health data applies personal health information (PHI) for uses outside of direct health care delivery. It includes such activities as analysis, research, quality and safety measurement, public health, payment, provider certification or accreditation, marketing, and other business applications, including strictly commercial activities. Secondary use of health data can enhance health care experiences for individuals, expand knowledge about disease and appropriate treatments, strengthen understanding about effectiveness and efficiency of health care systems, support public health and security goals, and aid businesses in meeting customers’ needs. Yet, complex ethical, political, technical, and social issues surround the secondary use of health data. While not new, these issues playincreasingly critical and complex roles given current public and private sector activities not only expanding health data volume, but also improving access to data. Lack of coherent policies and standard “good practices” for secondary use of health data impedes efforts to strengthen the U.S. health care system. The nation requires a framework for the secondary use of health data with a robust infrastructure of policies, standards, and best practices. Such a framework can guide and facilitate widespread collection, storage, aggregation, linkage, and transmission of health data. The framework will provide appropriate protections for legitimate secondary use.
The American Medical Informatics Association (AMIA) would like to acknowledge and thank the organizations that generously supported the project. Anchor Sponsors included GlaxoSmithKline, Lockheed Martin, and Pfizer. Supporting Sponsors included GE Healthcare, IBM, Intelligent Medical Objects (IMO), Medstat, and RemedyMD. The American Medical Informatics Association (AMIA) would like to acknowledge the contributions of the many individuals and organizations that helped to plan and convene this meeting and to develop the resulting paper. Douglas Barton, W. Ed Hammond, Steve Labkoff, and Suzanne Markel-Fox served as members of the Steering Committee. They were actively involved in and provided valuable input to all aspects of the planning processes. Remarks by David Brailer (as the National Coordinator for Health Information Technology) and presentations from Doug Barton (Lockheed Martin), Blake Caldwell (Centers for Disease Control and Prevention (CDC), Nancy Davenport-Ennis (National Patient Advocate Foundation), Stan N. Finkelstein (Harvard- MIT), Melissa Goldstein (Markle Foundation, Connecting for Health), Michael I. Lieberman (GE Healthcare), Eleanor Perfetto (Pfizer), and Kevin Tabb (Stanford Hospital and Clinics) helped to shape the discussions and findings. Dasha Cohen from AMIA helped organize and coordinate logistics for the meeting; Lisa Piazza helped prepare for and facilitate the onsite discussions; Elaine Steen helped edit the report; and Freda Temple provided onsite meeting support as well as helped with production of this document.
↵1 For purposes of this meeting, secondary use of data was defined as non-direct care use of personal health information (PHI) including but not limited to analysis, research, quality/safety measurement, public health, payment, provider certification or accreditation, and marketing and other business including strictly commercial activities.