Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research
2009

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In 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.

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334 pages · 6 x 9 · paperback
ISBN Paperback: 0-309-12499-9
ISBN Ebook: 0-309-12500-6
DOI: https://doi.org/10.17226/12458

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Institute of Medicine. 2009. Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research. Washington, DC: The National Academies Press.

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Front Matter i-xiv
Summary 1-14
Overview of Conclusions and Recommendations 15-62
1 Introduction 63-74
2 The Value and Importance of Health Information Privacy 75-110
3 The Value, Importance, and Oversight of Health Research 111-152
4 HIPAA, the Privacy Rule, and Its Application to Health Research 153-198
5 Effect of the HIPAA Privacy Rule on Health Research 199-244
6 A New Framework for Protecting Privacy in Health Research 245-284
Appendix A: Previous Recommendations to the Department of Health and Human Services 285-292
Appendix B: Commissioned Survey Methodology 293-300
Appendix C: Committee Member and Staff Biographies 301-310
Abbrevations and Acronyms 311-314
Glossary 315-320

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Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research (2009)

Chapter: 3 The Value, Importance, and Oversight of Health Research

Additional materials

Publication information

Suggested citation

My Academies

Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research (2009)

Chapter: 3 The Value, Importance, and Oversight of Health Research