If researchers have any hope of removing roadblocks to conducting clinical trials and population-based research since the enactment of the Health Insurance Portability and Accountability Act (HIPAA), they rest with an independent Institute of Medicine (IOM) panel studying the issue. In 2003, the President’s Cancer Panel called for a re-examination of HIPAA Privacy Provisions on clinical research; these concerns were raised again in the Panel’s 2005 to 2006 Annual Report, Assessing Progress, Advancing Change.

The American Society of Clinical Oncology (ASCO) is playing an active role in the IOM review. President-elect Richard L. Schilsky, MD, presented on behalf of the ASCO membership to the IOM Committee at its first meeting, where he described ASCO’s data collection efforts. ASCO’s Cancer Research Committee has contributed $25,000 to the IOM for the committee report. ASCO also nominated Sandra Horning, MD, as a representative to the IOM Panel; she has since been invited and agreed to participate.

ASCO will use data from this analysis to compile a database of examples of the impact of HIPAA on research in the cancer community. A final report will highlight impediments to research and clarify areas of misinterpretation and overinterpretation.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2793773/