Abstract
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.
Highlights
Patient and consumer groups are increasingly considered an important point of reference by healthcare agencies, research institutions, medical societies and the drug industry, thanks to their role and work for patients
The present study assessed the transparency of a large group of Italian patient and consumer groups and a group of pharmaceutical sponsor companies, through defined indicators, focusing on the information reported on their websites
The pharmaceutical companies were selected on the basis of their market sales, their websites were searched for listings of patient groups – dealing with specific disease – and consumer groups – dealing with healthcare rights, quality of healthcare services, topics of public interest
Summary
Patient and consumer groups are increasingly considered an important point of reference by healthcare agencies, research institutions, medical societies and the drug industry, thanks to their role and work for patients. [7,8] As drug companies and patient groups move closer, disclosure and openness become essential for transparency, and the internet could be a useful means of making sponsorship information accessible to the public. 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
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