Patient Organizations’ Funding from Pharmaceutical Companies: Is Disclosure Clear, Complete and Accessible to the Public? An Italian Survey

BackgroundMany patients’ and consumers’ organizations accept drug industry funding to support their activities. As drug companies and patient groups move closer, disclosure become essential for transparency, and the internet could be a useful means of making sponsorship information accessible to the public. This survey aims to assess the transparency of a large group of Italian patient and consumer groups and a group of pharmaceutical companies, focusing on their websites. Methodology/Principal FindingsPatient and consumer groups were selected from those stated to be sponsored by a group of pharmaceutical companies on their websites. The websites were examined using two forms with principal (name of drug companies providing funds, amount of funding) and secondary indicators of transparency (section where sponsors are disclosed, update of sponsorship). Principal indicators were applied independently by two reviewers to the patient and consumer groups’ websites. Discordances were solved by discussion. One hundred fifty-seven Italian patient and consumer groups and 17 drug companies were considered. Thirteen drug companies (76%) named at least one group funded, on their Italian websites. Of these, four (31%) indicated the activities sponsored and two (15%) the amount of funding. Of the 157 patient and consumer groups, 46 (29%) named at least one pharmaceutical company as providing funds. Three (6%) reported the amount of funding, 25 (54%) the activities funded, none the proportion of income derived from drug companies. Among the groups naming pharmaceutical company sponsors, 15 (33%) declared them in a dedicated section, five (11%) on the home page, the others in the financial report or other sections. Conclusions/SignificanceDisclosure of funds is scarce on Italian patient and consumer groups’ websites. The levels of transparency need to be improved. Disclosure of patient and consumer groups provided with funds is frequent on Italian pharmaceutical companies’ websites, but information are often not complete.研究背景：众多患者与消费者组织（patient and consumer groups）接受医药行业资助以支撑其运营活动。随着制药公司与患者组织的联系日益紧密，信息披露对于提升透明度至关重要，而互联网则可为向公众公开资助信息提供有效途径。本研究旨在以网站为核心考察对象，评估一批意大利患者与消费者组织及若干制药公司的透明度水平。 研究方法与主要结果：本研究从其网站上标注由某制药公司（pharmaceutical companies）群体资助的组织中遴选患者与消费者组织。采用两类指标开展网站审查：核心指标（提供资助的药企名称、资助金额）与透明度次要指标（资助信息披露板块、资助信息更新情况）。两名评审员独立对患者与消费者组织的网站进行核心指标评估，意见分歧通过讨论协商解决。本次研究共纳入157个意大利患者与消费者组织及17家制药公司。其中13家药企（占比76%）在其意大利语网站上标注了至少1家受资助的组织；在上述标注了受资助方的药企中，4家（31%）说明了受资助活动的具体内容，2家（15%）披露了资助金额。在157个患者与消费者组织中，46家（29%）标注了至少1家提供资助的制药公司；其中3家（6%）报告了资助金额，25家（54%）说明了受资助活动内容，无一家披露来自制药公司的收入占比。在标注了制药公司资助方的组织中，15家（33%）将资助信息置于专属披露板块，5家（11%）置于网站首页，其余组织则将资助信息披露于财务报告或其他板块。 结论与意义：意大利患者与消费者组织的网站上，资助资金的信息披露情况普遍匮乏，透明度水平亟待提升。意大利制药公司的网站上虽常披露其所资助的患者与消费者组织相关信息，但相关信息往往并不完整。