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

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 compar...

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Bibliographic Details
Published in:Health Affairs 2010-11, Vol.29 (11), p.2082-2090
Main Authors: Peddicord, Douglas, Waldo, Ann B., Boutin, Marc, Grande, Tina, Gutierrez, Luis
Format: Article
Language:English
Subjects:
American Recovery & Reinvestment Act 2009-US
Comparative studies
Consent
Data integrity
Datasets
Diabetes
Effectiveness studies
Electronic health records
Health care policy
Health Insurance Portability & Accountability Act 1996-US
Medical records
Medical research
Patient Protection & Affordable Care Act 2010-US
Patients
Privacy
Review boards
Statistical analysis
Statistical methods
Studies
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Summary: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. [PUBLICATION ABSTRACT]
ISSN:0278-2715
1544-5208
DOI:10.1377/hlthaff.2010.0635