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

BACKGROUND: Many 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 FINDINGS: Patient 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/SIGNIFICANCE: Disclosure 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

Self-fulfilling prophecies of the European <i>knowledge-based bio-economy</i>: the discursive shaping of institutional and policy frameworks in the bio-pharmaceuticals sector

Discourses matter. They help to shape institutions and policies. A new discourse has emerged in recent EU innovation policy centred on the idea of a knowledge-based bio-economy (KBBE). It is officially defined as ‘the sustainable, eco-efficient transformation of renewable biological resources into health, food, energy and other industrial products.’ The KBBE agenda links current problem diagnoses, research priorities, technological innovation, and societal benefits. In analysing the KBBE discourse, this paper draws on the sociology of technological expectations, which emphasises the performative, mobilising and self-fulfilling roles of such future-oriented visions. For example, the KBBE agenda shapes European research and innovation priorities in the bio-pharmaceutical sector. It frames socially relevant bio-knowledge in terms of pre-competitive research which can eventually facilitate new commercial products and patentable knowledge. Moreover, the agenda defines new institutional and policy frameworks necessary to realise societal benefits from these products and knowledge