Maintaining the confidentiality of personal health information is a priority for the Nation and for health services researchers who often have access to and use personal data in their studies. Accordingly, the Agency for Healthcare Research and Quality and the Office of the Assistant Secretary for Planning and Evaluation of the Department of Health and Human Services commissioned the Institute of Medicine to undertake a study on data privacy. The IOM was charged by the sponsors with identifying current and best practices of boards that review health services research, both research that is subject to Federal regulation and research that falls outside it.
The purpose of the study was to improve understanding and provide guidance and recommendations to institutional review boards (IRBs), privacy boards, and researchers about the protection of personal health information used in health services research. Adopting best practices will assist the IRBs, privacy boards, and researchers alike in assuring the public that their personal information when used for research is properly safeguarded.
Limited free copies of the IOM's 192-page report, Protecting Data Privacy in Health Services Research (AHRQ Publication No. OM-01-0008), are available from the AHRQ Publications Clearinghouse.
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