From 2012 to 2016 the drug industry donated over £57 million to UK patient organisations, with priority given to a small number of organisations supporting commercially high profile conditions like cancer, reveals an analysis published by The BMJ today.
The researchers call for greater transparency to ensure that industry funding is not unduly influenced by commercial objectives.
Patient organisations are increasingly involved in policy and research, including decisions on public funding of medicines and treatments. Yet existing evidence suggests that many patient organisations have widespread, and often not entirely transparent, financial relationships with drug companies.
Since 2012, corporate members of the European and UK pharmaceutical industry associations have had to disclose their payments to patient organisations, creating new opportunities for analysis.
Using payment disclosure reports published on company websites, combined with patient organisation websites and charity regulator records, researchers from the University of Bath (UK) and Lund University (Sweden) set out to assess the scale of industry funding, its main providers and recipients, and the nature of funded activities.
They found that during 2012 to 2016, industry disclosed 4,572 payments worth £57.3m to 508 UK patient organisations.
While this represented only a sixth of its funding for healthcare professionals and organisations (£340.3m) in 2015 alone, patient organisations seemed increasingly important for drug companies, note the authors.
For the 21 companies that disclosed consistently over the five years, the number of payments increased slightly, from 738 to 772, but their value was 1.4 times higher (£7.6m vs £10.8m).
A few companies dominated the funding landscape, with the top ten providing more than two-thirds (69.2%) of all funding. As with payments to healthcare professionals, the largest donors were "big pharma" companies.
The top funding priority was supporting patient organisations' public involvement, including "advocacy, campaigning, and disease awareness", "communication" and "policy engagement", which together attracted £17.9m (31.2%). This was followed by support for engagement in research activities, which attracted £14m (24.6%) of funding.
In contrast, "support for patients" attracted £3.4m (5.9%) and "organisational maintenance and development" attracted just £1.6m (2.8%) of funding.
When funding was assessed by 30 condition areas, the authors found that priority was given to commercially high profile conditions, such as cancer and diabetes. For example, neoplasms (any unusual tissue growth - benign or malignant - encompassing cancerous and pre-cancerous changes) attracted £20.9m (36.4%) of all funding.
The hierarchy of funding within each condition area also reflected the industry's commercial priorities. For example, within neoplasms, multiple myeloma (blood cancer) attracted £7.5m (35.9%), followed by breast cancer (19.6%).
Diabetes received £3.7m (57.6%), the most of any endocrine, nutritional, and metabolic disease, while the bulk of funding for infectious and parasitic diseases went to HIV (37.4%) and viral hepatitis (23.6%).
Importantly, the biggest donors in these condition areas have recently launched several high priced drugs, say the authors.
The emerging picture of industry funding shows that companies might seek to use some patient organisations as "third parties" in reaching other audiences, they write.
Responding to risks posed by the concentration of industry funding requires structural solutions, such as a shared corporate funding pool detached from current commercial objectives or treatment areas or a programme of public grants, say the authors.
This "would make for a more level playing field for patient organisations that cover currently underfunded condition areas or have weak industry links," they conclude.
More immediately, low-cost solutions to increase the transparency of funding might involve introducing a single standard of reporting for all companies and creating a searchable publicly available database of payments to patient organisations, they add. These solutions could be modeled on the Disclosure UK initiative, which has covered industry payments to healthcare professionals and organisations since 2015.