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Is HIPAA Interfering With Long-Term Medical Studies?
February 02, 2005

The Health Insurance Portability and Accountability Act (HIPAA), effective April 14, 2003, was designed to ensure the privacy of individual’s health information. The privacy rule of HIPAA covers the how, when and with whom a patient’s information can be shared.

There are questions regarding the effect of HIPPA on research projects at a national level. This concern was highlighted in a recent editorial by Roberta Ness, MD, MPH in Annals of Epidemiology. Her editorial discussed the impact of HIPAA on a 16-year-long rapid cancer case reporting in California. Prior to HIPAA, the University of California was able to freely contributed patient information to the California State Cancer Registry. Researchers would than be able to access information on newly diagnosed patients. When the University’s interpretation of the law prevented them from releasing names of patients, researchers were unable to access valuable information. Recently, the two-year dispute ended, and an agreement was reached that allows vital information to be accessed again.

As a result of these issues, the Department of Health and Human Services has proposed HIPAA rule modifications. Any changes will be determined by the new Secretary for Health and Human Services, Mike Leavitt. Contributing to the problem is the lack of a uniform interpretation of HIPAA by academic institutions. Ensuring a balance between a patient’s privacy and ensuring medical progress through research will be an important job.

Beyond the Cure will continue to keep readers informed of progress on this topic.

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