Use of Patients’ Protected Health Information to Solicit Hospital Funds: How did This Practice Come About?

Modifications to Health Insurance Portability and Accountability Act (HIPAA) have allowed for the disclosure of patient protected health information (PHI) for the purpose of hospital fundraising. The public has recently raised ethical concerns regarding these practices. We examined the forces that brought about these HIPAA modifications. We first examined 304 comments submitted to the proposed rule for the HIPPA regulation modifications. We additionally queried the OpenSecrets repository for lobbying activity by these commenters. We found that 57 out of the 304 comments pertained specifically to fundraising practices. The majority of comments were from hospital developmental (fundraising) offices (51%, 29 of 57 comments), and the majority (96%, 24 of 25 hospital comments; 83%, 34 of 41 total comments discussing PHI disclosure) supported additional PHI disclosure. There was a paucity of comments from physician organizations (1 of 57) and patient advocates (2 of 57). The majority of lobbying dollars (95% of over $81 million) were from commenters who favored the modifications. The lack of physician and patient representation in the rule-making process likely contributed to the creation of regulations that elicit ethical concerns in physicians, and potential harm for patients.