The Warren Alpert Medical School of Brown University, Providence, Rhode Island, USA.
Massachusetts Eye and Ear, Boston, Massachusetts, USA.
Otolaryngol Head Neck Surg. 2019 Dec;161(6):967-969. doi: 10.1177/0194599819874828. Epub 2019 Sep 3.
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.
患者倡导组织(PAO)是致力于通过教育/咨询和研究资金等活动使患者及其家属受益的非营利组织。尽管医药/器械公司可能是重要的合作伙伴,但行业捐赠可能会使 PAO 的工作产生偏差。我们对 Kaiser Health News 的非营利组织数据库进行了回顾性横断面分析,以确定并描述在 2016 年活跃的耳鼻喉科 PAO(n = 32)。在这些 PAO 中,有一半(n = 16,50.0%)专注于耳科疾病,平均年收入为 310 万美元。在 15 个有公开捐赠者名单的 PAO(46.9%)中,有 10 个(66.7%)收到了行业的捐款。很少有 PAO 公开报告行业捐款的总额(n = 3,9.4%)或发布了减轻与捐赠者潜在财务利益冲突的政策(n = 3,9.4%)。要求制药和器械公司公开报告向 PAO 的捐款,可能有助于患者、医疗服务提供者和政策制定者更好地了解这些有影响力的利益相关者的倡导活动。