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A Proposal To Protect Privacy Of Health Information While Accelerating Comparative Effectiveness Research

Health Affairs , Volume 29 (11): 2082 – Nov 1, 2010

Details

Publisher
Project HOPE - The People-to-People Health Foundation, Inc.
Copyright
Copyright 2010 by Project HOPE: The People-to-People Health Foundation, Inc.
ISSN
0278-2715
eISSN
1544-5208
D.O.I.
10.1377/hlthaff.2010.0635
Publisher site
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A Proposal To Protect Privacy Of Health Information While Accelerating Comparative Effectiveness Research

Abstract

Current laws, practices, and concerns about privacy inhibit access to health data for research. Barriers include inconsistent Institutional Review Board policies and complicated and costly procedures to obtain the consent of patients for release of their information. To realize the promise of comparative effectiveness research, it is essential to develop a new policy framework that will allow and encourage the use of health information in all forms—fully identifiable, partially anonymized, and deidentified. We propose that health data be made available for information-based research under a so-called research safe harbor. The arrangement would include strict data security controls, standards, and practices to be promulgated by the secretary of health and human services, and an annual third-party audit to ensure compliance.
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