Effect of the HIPAA Privacy Rule on Health Research: Proceedings of a Workshop Presented to the National Cancer Policy Forum

The Health Insurance Portability and Accountability Act (HIPAA) of 1996 was enacted to improve the portability and continuity of health insurance; promote medical savings accounts; improve access to long-term care services and coverage; and simplify the administration of health insurance. HIPAA’s Administrative Simplification provisions focus on facilitating the electronic exchange of information for financial and administrative functions related to patient care. However, the very advances that make it easier to transmit information also present challenges to preserving the confidentiality of potentially sensitive personal information contained in medical records. In 2003, the President’s Cancer Panel discovered HIPAA Privacy Rule slowed research on cancer survivors, as well as causing increased bureaucracy, informed consent problems, and complications for clinical trials. Effect of the HIPAA Privacy Rule on Health Research evaluates the impact of HIPAA provisions and provides guidance to legislators on amendments needed to make this law better serve the interests of cancer survivors and others.