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

TLDR

Secondary use of health data—applying PHI for research, quality measurement, public health, and commercial purposes—can improve care and knowledge but faces complex ethical, political, technical, and social challenges, and the absence of coherent policies hampers strengthening the U.S. health system. The paper calls for a national framework of policies, standards, and best practices to guide and support the secondary use of health data.

Abstract

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.