"Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research"

Report: HIPAA Privacy Rule Not Private Enough

In 1996, Congress enacted the Health Insurance Portability and Accountability Act (HIPAA), which called for a set of federal standards, now known as the HIPAA Privacy Rule, for protecting the privacy of personally identifiable health information. One major goal of the Privacy Rule is to ensure that individuals' privacy is properly protected while allowing the flow of information needed to promote high-quality health care. In 2007, the Institute of Medicine charged the Committee on Health Research and the Privacy of Health Information with two major tasks: 1) to assess whether the HIPAA Privacy Rule is having an impact on the conduct of health research, and 2) to propose recommendations to facilitate health research while maintaining or strengthening the privacy protections of personally identifiable health information. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the committee concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that, as currently implemented, it impedes important health research.

The committee determined that the Privacy Rule's research provisions have many serious limitations, and, therefore, it recommends first and foremost that Congress authorize the Department of Health and Human Services and other relevant federal agencies to develop a new approach to ensuring privacy in health research. This new framework, which should be applicable to all health research in the United States regardless of the source of funding or the holder of the data, would improve the privacy and confidentiality of personal health data used in research by reducing variability in the ethical oversight of research and by placing a high priority on strong security protections. It would also enable responsible research and enhance trust in the research enterprise, the report concludes.

Whether the Privacy Rule is revised or a new framework is adopted, the committee stresses the need for three additional changes. The committee recommends that all health research institutions take strong measures to safeguard the security of personallly identifiable health information. It recommends that HHS support the development and use of new security technologies and self-evaluation standards. In addition, to encourage people to volunteer to serve on IRBs or Privacy Boards, the committee recommends that HHS or Congress, as necessary, provide reasonable protection against civil suits for IRB and Privacy Board members. The protection should be reserved for good-faith decisions made within the scope of the Boards' responsibilities and backed by minutes or other evidence; there should be no protections for misconduct in reviewing the research. Because studies show that the majority of Americans are interested in the findings of health research, the committee recommends that HHS and researchers take steps to inform the public further about health research--how research is conducted, the results it produces, and what value it provides to society. For more information, visit www.iom.edu, and click on the "Reports" button.

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