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HIPAA privacy rule fails to adequately protect patient privacy and hampers health research
Date:2/4/2009

research and that it is critically important to our nation's health to strengthen privacy protections and still facilitate research," said committee chair Lawrence O. Gostin, professor of law and director, O'Neill Institute for National and Global Health Law, Georgetown University Law Center, Washington, D.C. "Our recommendations aim to boost regulations and practices that effectively protect personally identifiable health information, while changing provisions of the HIPAA Privacy Rule or its interpretations that have proved to be ineffective."

The HIPAA Privacy Rule regulates what uses and disclosures of personally identifiable health information are permitted by health plans, health care providers, and other entities covered by the regulation. The goal is to ensure that individuals' health information is properly protected while allowing the flow of data needed to promote high-quality health care and health-related research.

However, the HIPAA Privacy Rule is difficult to reconcile with other federal regulations governing research involving people and their personally identifiable information. Moreover, organizations that collect and use health data vary greatly in how they interpret and follow the rule, and the rule does not apply uniformly to all health research. The committee's review of published reports, testimony from patient and privacy advocates and the health research community, and other sources of information led it to conclude that the way the rule is currently interpreted does not adequately protect privacy and impedes important health research.

HHS and other federal agencies should develop a new approach to regulation that focuses on best practices in privacy, security, and transparency, the report says. The new framework should facilitate use of health data in which personally identifiable information is removed and should provide legal sanctions against unauthorized re-identification of individuals. It should p
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Contact: Christine Stencel
news@nas.edu
202-334-2138
National Academy of Sciences
Source:Eurekalert

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