Big pharma companies are increasing donations to patient organisations in the UK, but transparency around payments is limited and only gives a ‘foggy’ picture of the situation, new research has found.

The research team, from the University of Bath and Lund University, Sweden, calls for a robust, standardised disclosure system to make data clearer, increase transparency and allow easy cross-checking with other data, based on existing requirements around payments from pharma companies to healthcare professionals, hospitals and clinical commission groups. The study is published today in The BMJ.

At present disclosure from pharmaceutical companies about payments to patient organisations is only subject to industry self-regulation, and there is no standardised way it is reported, meaning data is incomplete, fragmented across dozens of individual company websites, and often mixed with data about payments to other types of organisations. All of which makes it very difficult to get a clear picture of where money is coming from and going.

Previous research has raised concerns about how organisations with financial ties to the pharma industry could become seemingly independent 'third parties' promoting new medicines, often with problematic clinical profiles, cost-effectiveness or budgetary impacts.

By trawling dozens of company websites and analysing 220 disclosure reports the researchers in the Department of Social & Policy Sciences at the University of Bath were able to piece together payments from pharma companies to UK patient organisations between 2012 and 2016.

Key findings

They found that a few large donors were spending increasing amounts of money on a handful of patient organisations, working on commercially high-profile conditions like cancer.

Overall, they found 4,572 payments totalling £57.3M, with the number of payments rising by 40% between 2012-16, and the value of payments more than doubling. Ten companies provided almost 70% of all funding.

The biggest share of the funding (31.2%) was for public engagement activities, including 'advocacy, campaigning and disease awareness', 'communication' and 'policy engagement', with 24.6% of funding dedicated to research, and patient support representing just 5.9% of donated funds.

Lead author Dr Piotr Ozieranski from the University of Bath, said: “The emerging picture of industry funding suggests that companies might seek to use some patient organisations as ‘third parties’ in reaching other audiences. We don’t think these organisations are deliberately pursuing a corporate agenda, but firms could shape organisations’ profiles by heavy investment in their external activities. We know that patient organisations are under-funded and there’s relatively little funding available from the NHS, so when you put these things together it’s concerning.

“That’s why transparency is so important, but it has to be practical transparency.”

Dr Shai Mulinari from Lund University, explained: “Currently data is theoretically available, but you have to go to multiple websites, as we have done, to get it. In reality that’s impractical if you are, for example, a health policy decision maker and you want to check how involved with the industry any given patient organisation is. It’s also a system based on the industry policing itself, which leaves some areas with little oversight. For example, where payments are missing we can’t know if they don’t exist or if they haven’t been disclosed.

“There’s also a lot of noise in the data, we found many payments that are not really relevant to patient organisations, like to hospitals or universities.”

Emily Rickard, a PhD student at the University of Bath, noted: “None of this is to say that anyone is necessarily hiding anything, but it needs to be easier to check where money is coming from and going to. What we want to see is more practical transparency – based on existing solutions, for example the Disclosure UK template that already exists where pharma firms have to report payments to healthcare professionals and healthcare organisations, such as hospitals. Disclosures filled in using a simple format could then be very easily turned into a publicly available single database, which could be searched for by any interested member of the public, including policymakers. This could be low-cost, practical, and would also increase transparency.”

Dr Ozieranski summed up: “It’s not just about making payment data available in theory, but how accessible it is, how is it organised, if it can easily be cross-checked with other data – these are really important issues.”

Notes on the study

  • The paper 'Exposing drug industry funding of UK patient organisations' is published in The BMJ via

  • Emily Rickard is an ESRC+3 funded PhD Student in Social Policy at Bath. Her PhD project is exploring power and lobbying in relation to the pharmaceutical and food and beverage industries in the UK.

  • The research was funded by FORTE, the Swedish Research Council for Health, Working Life and Welfare.