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First published October 31, 2006 as JAMIA PrePrint; doi:10.1197/jamia.M2273
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J Am Med Inform Assoc. 2007;14:1-9. DOI 10.1197/jamia.M2273.
© 2007 American Medical Informatics Association

White paper

Toward a National Framework for the Secondary Use of Health Data: An American Medical Informatics Association White Paper

Charles Safran, MD, MSa, Meryl Bloomrosen, MBAb,*, W. Edward Hammond, PHDc, Steven Labkoff, MDd, Suzanne Markel-Fox, PHDe, Paul C. Tang, MDf, Don E. Detmer, MD, MAg With input from the expert panel (see Appendix A)

a Past-Chairman, American Medical Informatics Association, Associate Clinical Professor of Medicine, Harvard Medical School/Beth Israel Deaconess Medical Center, Boston, MA
b Associate Vice President, American Medical Informatics Association, Bethesda, MD
c Professor, Fuqua School of Business, Duke University, Durham, NC
d Director, Healthcare Informatics, Pfizer, Inc. NY, NY
e Director, Data Exploration Sciences, GlaxoSmithKline, King of Prussia, PA
f Chairman of the Board, American Medical Informatics Association, Bethesda, MD, Chief Medical Information Officer, Palo Alto Medical Foundation, Palo Alto, CA
g President and CEO, American Medical Informatics Association, Bethesda, MD, Professor of Medical Education, University of Virginia, 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 (Email: meryl{at}amia.org).

Received for publication: 09/11/06; accepted for publication: 10/09/06.

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 play increasingly 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.




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