Patient organizations and charities are at risk of aligning their interests with their corporate funders even when this doesn’t benefit their members, according to a new study led by the University of Bath in the UK. To combat this, the researchers are calling for action to safeguard the independence of patient groups.

The new research—led by Dr. Piotr Ozieranski from the Department of Social and Policy Sciences at Bath—focuses on pharmaceutical industry payments to patient organizations in Poland, comparing the funding model followed by this central European country to those found in Western Europe and North America.

Patient organizations in the US and across Europe are increasingly dependent on funding from drug companies. In Europe, this happens against a backdrop of reduced government funding of patient groups and dwindling funding for the health sector more broadly.

Explaining why this global trend matters, Dr. Ozieranski—who studies the transparency of interactions between drug companies, patient organizations and the health service—said, “Patient organizations have established themselves as key stakeholders in the health policy domain, playing an important role in raising awareness of diseases and supporting patients with specific diseases, and there’s an assumption that they are independent and represent their members’ interests alone.”

“Pharmaceutical companies are eager to fund their work, but this comes with strings attached—these same companies manufacture drugs designed for the very people who have turned to the patient organization for independent support.”

Hidden conflict of interest

Dr. Ozieranski said this clear conflict of interest between drug companies and patient organizations is not always apparent at first glance.

He said, “Companies play the long game—they don’t want anything obvious in return for their funding, but over time, they build closer ties with the patient organizations. As their relationship deepens, the two bodies run shared projects and conferences, and may provide joint testimony to scientific advisory bodies.

“In other words, drug companies shape and mold patient organizations over time. This can be concerning as patient organizations should represent the interests of patients, their caregivers and families, which are not necessarily the same as those of product manufacturers.”

The new study, conducted by the University of Bath together with Lund University, Sweden and Kozminski University, Poland, and published this week in the International Journal of Social Determinants of Health and Health Servicesadds further nuance to these trends. It does so by providing an in-depth examination of financial ties between pharmaceutical companies and patient organizations in Poland, the largest country in Central Europe.

How to make things better

Dr. Ozieranski and his collaborators, Dr. Marta Makowska (from the Kozminski Academy) and Dr. Shai Mulinari (from Lund University), propose three core strategies to mitigate the risks of undue influence being exerted on patient groups by drug-company funders—not only in Poland but also in other countries, including the UK:

• Create a central shared pool of funding supported by all companies, so patient organizations avoid becoming overly reliant on one, or a small number of, donor corporations to continue their work. This fund would be managed by an independent body responsible for evaluating and approving project proposals from patient organizations, ensuring greater separation and impartiality.
• Follow the example set by Poland, where taxpayers are invited to allocate 1.5% of their income tax to a specific patient organization, to fund its activities. To qualify, organizations must register as “public benefit organizations,” a status that mandates transparent reporting of the funds they receive as well as other activities undertaken.
• Replace drug company funding with other funding sources whenever possible. Some patient organizations may find it impossible to cut their ties with drug companies entirely. However, every step taken in that direction is valuable, including finding other sources of support or gradually withdrawing from being industry funding, which can start from non-essential, lower-scale activities.

All funding collected in a single database

There is concern that governments around the world seem to pay little attention to trends in funding for patient group funding, allowing companies to set and execute the rules for disclosing such payments. Essentially, companies are free to “mark their own homework.”

To bolster the independence of patient groups, Dr. Makowska calls for each country to establish a simple, state-run, state-mandated database of all payments made to patient organizations, doctors and hospitals.

She said, “At the moment, there’s no such place, and as you might expect, companies are not always truthful about the funding they disclose.”

Dr. Mulinari added, “Transparency of drug company funding of patient organizations needs improvement. When conducting this study, we had to find and download over 200 disclosure reports published separately by different drug companies.

“We then integrated them into a single payments database and painstakingly cleaned the data, which involved ensuring that each patient organization appears under a single name, and not several names used by different companies. This should be the work done by drug companies and not researchers , let alone patients or members of the public.

“We have seen this pattern over and over again in many European countries. It is unreasonable to expect this amount of investigative work to be able to achieve even a modest degree of transparency of ties between key actors in today’s health care.”