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Cover of Beyond the HIPAA Privacy Rule

Beyond the HIPAA Privacy Rule

Enhancing Privacy, Improving Health Through Research

Edited by Sharyl J Nass, Laura A Levit, and Lawrence O Gostin. .

Washington (DC): National Academies Press (US); .
ISBN-13: 978-0-309-12499-7


The U.S. Department of Health and Human Services (HHS) developed a set of federal standards for protecting the privacy of personal health information under the Health Insurance Portability and Accountability Act of 1996 (HIPAA). The HIPAA Privacy Rule set forth detailed regulations regarding the types of uses and disclosures of individuals’ personally identifiable health information—called “protected health information”—permitted by “covered entities” (health plans, health care clearinghouses, and health care providers who transmit information in electronic form in connection with transactions for which HHS has adopted standards under HIPAA). A major goal of the HIPAA Privacy Rule is to ensure that individuals’ health information is properly protected while allowing the flow of information needed to promote high-quality health care. The HIPAA Privacy Rule also set out requirements for the conduct of health research.

The Institute of Medicine Committee on Health Research and the Privacy of Health Information (the committee) was charged with two principal tasks : (1) to assess whether the HIPAA Privacy Rule is having an impact on the conduct of health research, defined broadly as “a systematic investigation, including research development, testing and evaluation, designed to develop or contribute to generalizable knowledge” ; and (2) to propose recommendations to facilitate the efficient and effective conduct of important health research while maintaining or strengthening the privacy protections of personally identifiable health information.


The project is sponsored by the National Institutes of Health and the National Cancer Institute, the Robert Wood Johnson Foundation, American Cancer Society, American Heart Association/American Stroke Association, American Society for Clinical Oncology, Burroughs Wellcome Fund, and C-Change. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the views of the organizations or agencies that provided support for the project.

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance.

Copyright © 2009, National Academy of Sciences.
Bookshelf ID: NBK9578PMID: 20662116
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