Beyond the HIPAA Privacy Rule Enhancing Privacy, Improving Health Through Research (2009) / Chapter Skim
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1 Introduction
1 Introduction
Pages 63-74
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From page 63... ...
The primary purpose of these provisions was to standardize the use of electronic health information, but Congress also recognized that advances in electronic technology could endanger the privacy of health information. Thus, HIPAA mandated the development of nationwide security standards and safeguards for the use of electronic health care information as well as the creation of privacy standards for protected health information.1 1 Protectedhealth information is personally identifiable health information transmitted by electronic media, maintained in electronic media, or transmitted or maintained in any other form or medium.
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From page 64... ...
Small health plans were given until April 14, 2004, to be in compliance. The primary targets of the HIPAA Privacy Rule were information uses and transactions necessary for the provision of health care, but the final regulations also apply to a great deal of health research.
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From page 65... ...
Some health research projects with important implications for health care improvements and public health protections entail the analysis of information that many would consider sensitive. For example, some research examines information regarding individuals' sexuality, or smoking, alcohol, and drug use habits.
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From page 66... ...
THE CONCERNS OF HEALTH RESEARCHERS Researchers began raising concerns about the potential impact of the HIPAA Privacy Rule on health research when the regulations were first proposed. However, researchers did not play a large role in shaping the final version of the HIPAA Privacy Rule published by HHS.
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From page 67... ...
Following the publication of the IOM's National Cancer Policy Forum's workshop summary, the governing board of the National Academies determined that a consensus study to examine the effects of the HIPAA Privacy Rule on health research would be of value, and funding for the study was obtained from diverse sources, including the National Institutes of Health, the National Cancer Institute, the Burroughs Wellcome Fund, the Robert Wood Johnson Foundation, the American Heart Association (AHA)
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From page 68... ...
To examine the question, the IOM appointed a 15-member committee with a broad range of expertise and experience covering various fields of health research; privacy of health information; health law, regulation, and ethics; human research protections and IRBs; health center administration; use and protection of electronic health information; and patient advocacy. The IOM committee was charged with the task of proposing recommendations that would facilitate the efficient and effective conduct of responsible health research while maintaining or strengthening the privacy protections of identifiable health information (Box 1-1)
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From page 69... ...
Consider the needs for privacy of identifiable personal health information and the value of such privacy to patients and the public. As data and evidence allow, the needs and benefits of patient privacy will be balanced against the needs, risks, and benefits of identifiable health information for various kinds of health research.
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From page 70... ...
. The committee's intention in presenting findings from opinion surveys, including those commissioned by the IOM, is to shed light on opinions regarding the influence of the HIPAA Privacy Rule on health research and patient privacy; it is not an attempt to definitively determine cause and effect.
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From page 71... ...
These recommendations aim to reduce variability in the interpretation of the HIPAA Privacy Rule as applied to research, and to facilitate important health research within the scope of the HIPAA Privacy Rule through revised and expanded guidance, or by altering some provisions that pose a hindrance to research but do not provide significant privacy protections. The committee's last set of recommendations do not directly relate to the HIPAA Privacy Rule, but should be adopted regardless of which of the committee's approaches is implemented (the new framework or revisions to the HIPAA Privacy Rule and associated guidance)
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From page 72... ...
Chapter 4 provides an overview of the HIPAA Privacy Rule and how privacy regulations apply to health research, including a discussion of the HIPAA Privacy Rule's relation to other regulations that govern the privacy of health information in research. Chapter 5 reviews the available evidence, including results from recent surveys, on the impact of the HIPAA Privacy Rule on the conduct of health research.
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From page 73... ...
2004. The use and disclosure of protected health information for research under the HIPAA Privacy Rule: Unrealized patient autonomy and burdensome government regulation.
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