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

Improving prescribing through big data approaches - ten years of the Scottish prescribing information system

Medicines are a major component of modern healthcare delivery, both in resource consumption and as drivers of innovation. The ever increasing application of digitalisation within day-to-day living and as part of our healthcare systems – with the resultant data generation – presents the opportunity to better define the populations exposed to medicines, and their benefits and harm in real world settings. This article outlines the development of the Scottish National Prescribing Information System (PIS) and describes how this capability is being used to support the safe and effective use of medicines, both nationally and internationally. Since 2009, PIS has included e-prescribed/e-dispensed and reimbursed medicines data, now totalling 976 million prescriptions, with codified structured data on dose instructions. A literature review, covering the period from January 2009 to March 2019, identified 40 full publications using PIS, the first occurring in 2014. The majority involved pharmacoepidemiology/drug use studies (50%) in cancer and cardiovascular disease. Measuring the value and impact of PIS was extended beyond publication quantification by illustrating the translation of PIS outputs into the learning health system at scale. The developing Scottish capabilities add breadth and depth to the wider evolving international environment, and offer the potential to contribute collegiately to the global effort on medicine safety and effectiveness, including support for the WHO Global Patient Safety Challenge: “Medication Without Harm”