Industry funding of patient organisations in the United Kingdom: A retrospective study of commercial determinants, funding concentration and disease prevalence

Objectives – To assess the relationship between UK-based patient
organisation funding and companies’ commercial interests in rare and
non-rare diseases in 2020. Design – Retrospective analysis of the value
and volume of payments from pharmaceutical companies to patient
organisations in the UK matched with data on the conditions supported by
patient organisations and drugs in companies’ approved portfolios and
research and development pipelines. Setting – UK. Participants – 74
pharmaceutical companies making payments to 341 UK-based patient
organisations. Main outcome measures – Alignment between the commercial
interests of pharmaceutical companies and the disease area focus of
patient organisations; difference in the volume and value of payments to
patient organisations broken down by prevalence of conditions; industry
funding concentration, measured as the number of companies funding each
patient organisations, the share of overall industry funding coming from
each contributing company and the share of industry funding of each
organisation comprised by the single highest payments. Results – 1,422
payments were made by 74 companies to 341 patient organisations. Almost
all funds (90%) from pharmaceutical companies were directed to patient
organisations that are aligned with companies’ approved drug portfolios
and research and development pipelines. Despite rare diseases affecting
less than 5% of the UK population, more than 20% of all payments were
directed to patient organisations which target such conditions. Patient
organisations focusing on rare diseases relied on payments from fewer
companies (p-value = 0.0031) compared to organisations focusing on
non-rare diseases. Conclusions – Companies predominantly funded patient
organisations operating in therapeutic areas relevant to companies’
portfolio or drug development pipeline. Patient organisations focusing on
rare diseases received more funding relative to the number of patients
affected by these conditions and relied more heavily on payments from
fewer companies compared to organisations targeting non-rare diseases.
Increased independence of patient organisations could help avoiding
conflicts of interest.