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First published October 31, 2006 as JAMIA PrePrint; doi:10.1197/jamia.M2273
Journal of the American Medical Informatics Association 2007;14(1):1-9
© 2007 American Medical Informatics Association

A more recent version of this article appeared on January 1, 2007
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Submitted on September 11, 2006
Accepted on October 9, 2006

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

Charles Safran MD, MS1*, Meryl Bloomrosen MBA2, W. Ed Hammond PhD3, Steve Labkoff MD4, Suzanne Markel-Fox PhD5, Paul C. Tang MD6, and Don Detmer MD, MA7

Affiliation of the authors: 1 Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA ; 2 American Medical Informatics Association, Bethesda, MD; 3 Fuqua School of Business, Duke University, Durham, NC; 4 Healthcare Informatics, Pfizer, Inc., New York, NY; 5 Data Exploration Sciences, GlaxoSmithKline, King of Prussia, PA; 6 American Medical Informatics Association, Bethesda, MD; Palo Alto Medical Foundation, Palo Alto, CA ; 7 American Medical Informatics Association, Bethesda, MD; University of Virginia School of Medicine, University of Virginia, Charlottesville, VA

* To whom correspondence should be addressed.

Secondary use of health data applies personal health information (PHI) for uses outside of direct healthcare 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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