The privacy rule of the Health Insurance Portability and Accountability Act (HIPAA) continues to have a significant negative impact on the scope, pace, and costs of research, according to The HIPAA Privacy Rule: Lacks Patient Benefit, Impedes Research Growth, a report of the Association of Academic Health Centers (AAHC).
The report is based on findings from a questionnaire sent to vice presidents for research and principal investigators at academic health centers nationwide. The findings reveal that researchers have difficulty recruiting participants and that the rule creates barriers to diversity in research studies. Such events are fundamentally changing the conduct of research and threatening the scientific credibility of future research.
To remedy this threat to research, AAHC calls for a revision of the HIPAA privacy rule, including an exemption of biomedical research from the rule and an augmentation of the well-established common rule with more explicit patient privacy protections.
Read the report.
