one such barrier is the lack of funding to build infrastructure and pursue their mission. many patient organizations turn to the pharmaceutical industry for sponsorship, and indeed, pharma has become an important vehicle for ensuring the sustainability of patient groups. in fact, in 2019, bloomberg reported that pharma companies gave us$680 million to patient groups and associated non-profits that year. more recently, u.k. newspaper the guardian wrote that 138 uk-based patient groups involved in the appraisal processes for new drugs in 2021 had financial links to the manufacturer. the disclosure of such financial relationships has prompted some commentators in the healthcare sector to wonder whether patient groups ought to have a voice at all. for example, transparency international global health has suggested that sometimes patient organizations may support the interests of a supplier, “rather than acting in the best interests of the people they represent, and that of wider public-health goals.”
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proving that their groups are truly representational. they have been greatly supported in this matter by social media, being able to quickly aggregate the opinions of patients — frequently sharing their findings on the collective needs of their constituency
being more strategic in their working relationships with pharma, often working alongside independent third parties . in the 1980s, hiv patient groups collaborated with the pharmaceutical and regulatory agencies to directly improve clinical trials and analysis; more and more patient groups are emulating this valuable dual-prolonged approach.
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proving their operational independence . patient groups are increasingly diversifying their income streams. good business practice in its own right, diversity also helps free patient groups from the suspicion of being open to influence. readily-obvious conflict-of-interest statements and the transparent publishing of funding sources (noticeable on many patient-group websites) are an element of the approach.
clearly, any effective, functioning collaboration between pharma and patient groups rests in part on the reputation of the industry. patientview , a uk-based research, publishing, and consultancy group, has tracked the pharma industry’s reputation over more than a decade from the perspective of thousands of patient organizations each year. during that time, patient groups (even those receiving pharma funds) have expressed mixed feelings about pharma. for example, only 41 per cent of patient groups responding to our 2018 survey thought the industry had an “excellent” or “good” corporate reputation. post-covid, levels of positivity significantly increased, and, in 2022, the equivalent figure was 60 per cent. nonetheless, in 2022, analyses of the commentaries provided by respondent patient groups revealed that many thought pharma could do more to improve transparency, through the sharing of clinical data, drug pricing, and disclosure of their funding of external stakeholders. in addition, they thought pharma could also do better in terms of integrity, including respecting patient groups’ needs, goals and independence.
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in 2024, patientview will publish the results of its most recent (but still ongoing) corporate reputation of pharma survey, an annual study that seeks to spark dialogue that helps pharma companies become more inclusive and understanding of patient groups and patients. and when patient groups have a seat at the table, healthcare improves for all.
if you lead a patient group, have your insights represented in this very important research. click here for the survey questionnaire — just four days left.