Revealing the extent of pharmaceutical industry funding of patient organisations in the UK

Emily Rickard is a PhD Student in the Department of Social and Policy Sciences at the University of Bath. Piotr Ozieranski is a Lecturer in the Department of Social and Policy Sciences at the University of Bath. Shai Mulinari is a Researcher in the Department of Sociology at Lund University, Sweden.

Controversial industry-patient ties

Relations between patient organisations and the pharmaceutical industry have been a subject of scholarly debate for over a decade. The tone of the debate has been predominantly critical_1-4, with scattered positive perspectives also being put forward_{5, 6}.

Industry-patient organisation relations can be seen as a force for good through increasing the often-limited funding sources available to patient organisations, which in turn may open up time and resources for patient organisations to dedicate more time to activism, research, and patient support. However, these positives can be quickly outweighed by potential harms, particularly where transparency_{7, 8}, dependency_{9, 10}, and trust₂ are concerned.

Despite the prominence of this debate, little is known about the extent and nature of industry funding of patient organisations in the UK. This is particularly shocking in light of the possible implications of such funding, including the potential for industry influence over patient organisations.

To fill this gap, our recent study paints a bigger picture of industry funding in the UK, and is the first to draw on pharmaceutical company disclosure reports, which are publicly accessible on company websites.

Building a payment database

We conducted web searches in June 2017 with follow-up searches in July 2018 to locate all available disclosure reports for 108 companies. This process identified 220 eligible disclosure reports scattered across company websites in various formats. We manually extracted all data from individual disclosure reports, including recipient name, value of donation, and the accompanying text describing each payment.

Cleaning the database was particularly challenging for various reasons, including the inconsistent format of reports, many organisations not actually being patient organisations (and hence needing to be excluded), company spelling errors making recipients difficult to identify, and multiple payments being reported within a single cell.

We conducted supplementary web searches of recipient websites to determine whether they were a UK based patient organisation. Once we had excluded all recipients that had been incorrectly disclosed, we were left with a database of 5232 disclosed payments made between 2012-2016. We coded the overall goal of payments and established a coding template based on iterative reading of payment descriptions, which allowed us to determine what industry’s funding priorities were.

Increased funding over time

We found that industry payments to patient organisations are increasing, having more than doubled between 2012- 2016. This increase coincides with a growing awareness of the important role patient organisations play in public policy_{9, 11.}

The total value of disclosed payments across all years was a massive £57m, suggesting that these relations are highly valued by the pharmaceutical industry.

Dense concentration and commercial attraction

Our analyses revealed that industry funding is highly concentrated, with a small number of donors and recipients dominating the payment landscape. For example, ten ‘big pharma’ companies provided almost 70% of all funding.

Companies were also found to prioritise funding patient organisations focusing on commercially attractive conditions. Neoplasms (such as cancers) received the largest share (£20,857,389, 36.4%) of the total funding, followed by endocrine, nutritional, and metabolic diseases (such as diabetes) which received £6,497,767 (11.3%). The remaining disease categories received an 8% or less share of the total funding.

We identified that the concentrated funding patterns coincide with recently launched high-priced drugs for these condition areas, suggesting that companies are financially supporting patient organisations at times where policy influence is particularly important.

More broadly, the targeted funding towards patient organisations focused on neoplasms and metabolic diseases aligns with the huge global market value of oncology medicines ($133bn in 2017₁₂) and diabetes medicines ($43bn in 2016₁₃).

Policy influence prioritised over patient support

A large chunk of industry funding went towards supporting patient organisations’ engagement with the public, with payments for “advocacy, campaigning, and disease awareness,” “communication,” and “policy engagement” totalling at £17,860,574 (31.2% of all funding).

In contrast, just £3,381,030 (5.9%) of funding went towards patient support, with even less being transferred for organisations maintenance and development (£1,613,061, 2.8%). These contrasting figures suggest that industry funding priorities are for activities that may help them pursue their own goals (for example there is a nod towards profit chasing through encouraging illness and treatment awareness [drumming up demand for their drugs]), campaigning (which may include campaigns such as patients demanding for access to drugs on the NHS), as well policy engagement (including funding attendance at parliamentary events which provide links to decision-makers).

For industry-patient organisation financial ties to be beneficial for the most important party, the patients, and for critics to be more accepting of these ties, more money arguably needs to be directed towards patient support. Whilst in our recent paper we do not conclude that pharmaceutical companies are directly manipulating patient organisations, the payment patterns that emerged suggest that the recipients’ activities may be susceptible to influence on a structural level through the emphasis placed on external engagement.

Foggy transparency

Another key finding from our study was that industry transparency of payments to patient organisations is lacking. When collecting the data from company disclosure reports, we found they were scattered across company websites, sometimes difficult to locate, and were presented in various formats (word documents, Excel documents, PDFs, and as a webpage).

This lack of consistency towards reporting of payments makes identifying payments difficult, particularly for the average user who does not have time to trawl through complex websites. What’s more, further noise in the data was identified even within disclosure reports, with many organisations being reported as patient organisations which were in fact not, such as healthcare organisations.

Policy implications and conclusions

It is important to consider our findings in context. Patient organisations are often organisations with a charitable status, who rely on public funds to allow them to pursue their goals of supporting patients and/or carers. In a context where public funding is dissipating, patient organisations may be left with few options but to seek industry support to ensure continued operation of their services.

However, determining who benefits and who wins₁₄ in these financial relationships remains an important and contestable issue for evaluating where power lies. Most advocators of industry funding mentioned in the introductory section of this blog would argue that patient organisations are the ones that are benefitting. Industry are providing them with much-needed funds and, as long as the relationship is transparent, it is in patient organisations’ best interests to engage in these financial relations.

In contrast, the arguably louder collective voice of critics of the relationship would strongly argue that pharmaceutical companies are the ones who are benefitting. The pharmaceutical industry has long been criticised as placing profits above patients,₁₅ therefore can we really trust that they are not using patient organisations as third-parties to pursue their own policymaking agendas? There may never be unanimous agreement on this, but our recent paper provides a unique and thought-provoking update to this longstanding debate.

Read the full paper, 'Exposing drug industry funding of UK patient organisations'. 

References

1. Herxheimer, A., 2003. Relationships between the pharmaceutical industry and patients' organisations. BMJ, 326(7400), pp.1208-1210.
2. Mintzes, B., 2007. Should patient groups accept money from drug companies? No. BMJ, 334(7600), pp.935-935.
3. Batt, S., 2014. From grass roots to pharma partnerships: Breast cancer advocacy in Canada.
4. Moynihan, 2017
5. Kent, A., 2007. Should patient groups accept money from drug companies? Yes. BMJ, 334(7600), pp.934-934.
6. Taylor, and Denegri,S., 2017. Industry links with patient organisations. BMJ, 356:j1251.
7. Ball, D.E., Tisocki, K. and Herxheimer, A., 2006. Advertising and disclosure of funding on patient organisation websites: a cross-sectional survey. BMC Public Health, 6(1), p.201.
8. Jones, K., 2008. In whose interest? Relationships between health consumer groups and the pharmaceutical industry in the UK. Sociology of Health & Illness, 30(6), pp.929-943.
9. Rose, SL., Highland, J., Karafa, M.T., and Joffe, S., 2017. Patient advocacy organizations, industry funding, and conflicts of interest. JAMA Intern Med, 177(3), pp. 344-350.
10. Hemminki, E., Toiviainen, H.K. and Vuorenkoski, L., 2010. Co-operation between patient organisations and the drug industry in Finland. Social science & medicine, 70(8), pp.1171-1175.
11. Lin, D.H., Lucas, E., Murimi, I.B., Kolodny, A. and Alexander, G.C., 2017. Financial conflicts of interest and the Centers for Disease Control and Prevention’s 2016 guideline for prescribing opioids for chronic pain. JAMA internal medicine, 177(3), pp. 427-428
12. 2018. Global Oncology Trends 2018. [Online]. Date Accessed: 8/06/2019.
13. Transparency Market Research., 2017. Pharmaceutical Market Research Report. [Online]. Date Accessed: 8/06/2019.
14. Domhoff, G. W., 2005. Basics of Studying Power. [Online]. Date Accessed: 07/06/2019.
15. Milani, K. and Duffy, D., 2019. Profit over Patients: how the rules of our economy encourage the pharmaceutical industry’s extractive behavior. [Online]. Date Accessed: 07/06/2019.