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Abstract

Patient advocacy organizations (PAOs) are nonprofits dedicated to benefiting patients and their families through activities such as education/counseling and research funding. Although medical drug/device companies may serve as important partners, industry donations may bias the efforts of PAOs. We conducted a retrospective cross-sectional analysis of the Kaiser Health News nonprofit database to identify and characterize otolaryngologic PAOs (n = 32) active in 2016. Among these PAOs, half (n = 16, 50.0%) focused on otologic diseases, and mean total annual revenue was $3.1 million. Among the 15 PAOs (46.9%) with publicly available donor lists, 10 (66.7%) received donations from industry. Few PAOs publicly reported the total amount donated by industry (n = 3, 9.4%) or published policies for mitigating potential financial conflicts of interest with donors (n = 3, 9.4%). Requiring drug and device companies to publicly report donations to PAOs may help patients, providers, and policy makers to better understand advocacy by these influential stakeholders.

Keywords

patient advocacy organization conflict of interest industry otolaryngology

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