American Association for Cancer Research



                                                                                                         MARCH 2009



Current rule jeopardizes personal health information and hinders important health research discoveries

A new study released by the Institute of Medicine (IOM) has found that the Health Insurance Portability Assurance Act (HIPAA) Privacy Rule not only fails to adequately protect personal health information but impedes progress in health research.

The Privacy Rule is intended, in part, to ensure that an individual's health information remains confidential while allowing researchers access to data needed to conduct important research. The recently released report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, reveals that the rule has serious limitations, however, because it is not uniformly applied to all health research, is broadly misinterpreted, and often conflicts with other federal regulations.

The IOM Committee on Health Research and the Privacy of Health Information, tasked with producing the report, recommended that policymakers allow for the adoption of an entirely new framework, separate from HIPAA, to protect health information during research. At the very least, the committee advised that there be serious revision of the existing Privacy Rule, including expanded compliance guidance on research provisions to reduce variability in interpretation.

The report concluded that continued progress toward improving the nation's health care depends on effective privacy protections that are implemented in a way that facilitates, rather than hinders health research. Its recommendations are timely given the gaining momentum behind electronic health care records and the corresponding debate among policy makers over how to effectively protect sensitive information. The recent economic stimulus package directed about $20 billion in federal funding to help spur the adoption of electronic health records and other technologies.

The IOM report is the subject of one of three Science Policy Forums that will be held during the 100th AACR Annual Meeting 2009 in Denver, Colorado. It is being co-chaired by Sandra J. Horning of the Stanford Cancer Center in Stanford, Calif., and Sharyl J. Nass of the IOM in Washington, D.C., and is scheduled for 2:30 - 4:00 p.m. on Sunday, April 19.



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