Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through ResearchIn the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule. In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research. |
Contents
Summary | |
Overview of Conclusions and Recommendations | |
1 Introduction | |
2 The Value and Importance of Health Information Privacy | |
3 The Value Importance and Oversight of Health Research | |
4 HIPAA the Privacy Rule and Its Application to Health Research | |
5 Effect of the HIPAA Privacy Rule on Health Research | |
6 A New Framework for Protecting Privacy in Health Research | |
Previous Recommendations to the Department of Health and Human Services | |
Commissioned Survey Methodology | |
Committee Member and Staff Biographies | |
Abbrevations and Acronyms | |
Glossary | |
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Common terms and phrases
AcademyHealth accessed August activities American approved authorization form breaches caBIG Center Chapter clinical trial committee’s Common Rule conducted covered entities databases deidentified direct identifiers removed disclosure of PHI effect electronic health records ensure facilitate federal guidance Harris Interactive health data health records health research health services research HIPAA Privacy Rule HMORN human subjects identifiable data identifiable health information identifiable information implemented important individual’s individuals informed consent Institutional Review Boards interpretation IRB or Privacy IRB/Privacy Board IRBs and Privacy limited dataset NCVHS ofthe percent of respondents personal health information personal information personally identifiable health PHIPA Pritts privacy and security Privacy Boards privacy of health privacy protections proposed protect the privacy protected health information protecting privacy protocol public health quality improvement recruitment registries regulations research projects research study respondents reported risk Rule’s SACHRP safeguards selection bias standards survey tion U.S. Congress waiver of authorization