The Privacy Rule of the Health Insurance Portability and Accountability Act (HIPAA), a regulation designed to protect the privacy of health information, continues to have a negative impact on the nation’s research enterprise, according to the latest survey of academic health center research administrators and principal investigators by the Association of Academic Health Centers (AAHC). Since the 2003 implementation of the Privacy Rule (45 CFR 160, 164), studies have shown that it has imposed barriers to research at academic health centers, the nation’s major research institutions, thus slowing the pace of research, increasing the costs, and significantly hindering participation of individuals in important research studies.

Research was not intended to be governed by the HIPAA Privacy Rule, but neither was it exempted from the regulation. However, the new constructs and restrictions on information mandated by the Rule have had untold consequences for the conduct of research and the advance of science and discovery in the United States. Despite repeated efforts by the research community to highlight the negative consequences of the HIPAA Privacy Rule, policymakers have made little attempt to address the Rule and consider options to remedy the situation. With the U.S. facing critical socioeconomic challenges, including an aging population and the desire for new treatments and cures for disease and illness, it is essential that policymakers reexamine the HIPAA Privacy Rule.

To read the entire Issue Brief please download the attached pdf file.

Attached Files

The HIPAA Privacy Rule: Lacks Patient Benefit, Impedes Research Growth