The Ties That Bind? Corporate Funding of Patient Groups

Independence. What does it mean? It’s a grand word. As I rebuild from mental health problems, it’s a question I ask myself of my own agency and freedom from tangled and hurtful thoughts and cognitions. It’s probably why I am also asking what it means in my own field of work – patient and public engagement, co-production and patient (lived experience) leadership.

In the 70s, the statutory mechanism for patient voice was local Community Health Councils and the national Association of CHCs. I joined my local CHC in the 90s. We were proud to be ‘independent’ of the NHS. I was also Chair of a local MIND charity and, alongside many mental health and survivor led groups, we fought fiercely for our ‘independence’ – the freedom ‘from’ vested interests and freedom ‘to’ act independently (i.e. speak up, challenge, etc). 

In those days, there was also an international network of Non-Governmental Organisations (NGOs), Health Action International, that was free of corporate interests that campaigned against the excesses of big pharma. I had been an international coordinator of HAI for a while as we addressed how big pharma undermined sensible use of medicines by, for example ‘dumping banned drugs’ in developing countries, secret influence over licensing processes and over-promotion. 

I later also worked for Which Magazine that had a proud record of being independent from vested interests in order to support consumer rights. I wrote a paper called The Ties That Bind that explored ‘disguised drug promotion’ by industry that snaked around voluntary regulations, such as the Code for Advertising issued by the Association of British Pharmaceutical Industry (ABPI). 

We were then aware of a few patient groups that received industry funding. We’d learned from the Baby Milk Scandal, that corporate influence over patterns of ill-health (subverting breast milk with formula) was a well-trodden path. We argued then for a pharma-free funding environment for those who prescribe medicines, and for patient groups to refuse funding from corporate interests.

The question is, should patient groups continue to advocate for independence. And can a group receive funding and still be independent? I used to know the answer to that question – it was quite straightforward. 

But times have changed. There are groups that still argue for complete freedom from pharma. There are groups now arguing vehemently against ‘privatisation’ of the NHS and commercial influences from the private sector (Just Treatment, for example). Now there are many who both receive funding – and who would, I imagine, argue that it does not affect or influence their activities. And austerity has brought huge challenges to funding.

There are lived experience leadership roles within the private sector. NHS England has drawn upon research done by a patient group to support the notion that patients trust in the sharing of data with private corporations (albeit with adequate safeguards). This was at the time when NHS England was in the process of contracting Palantir to run the Federated Data Platform. Palantir was founded and is owned by Peter Thiel, a Trump supporter who has argued “against democracy”. Meanwhile, in the wider scheme of things, we are entering an age when a UK-USA Trade deal might soften barriers to American Pharma companies entering the NHS.

My work around embedding lived experience roles within the NHS has also drawn fire from those who see this as patient voice ‘losing its independence”. Though I disagree with that for several reasons, it is an understandable criticism and requires exploration. Some have even questioned the nature of the relationship between HealthWatch - now the statutory voice for patient and public voice - and the CQC that hosts national HealthWatch. And there are huge questions about how lived experience or patient voice can stand up to the emergence of digital solutions and be part of decision-making.

My thanks to the Patient Experience Library for drawing my attention to a recent paper on pharmaceutical funding:

Patient and public involvement is increasingly advocated in health policy, research, and practice" says this paper.  As part of the trend, "Pharmaceutical companies are increasingly interacting with, and investing in, patients through, for example, training and networking opportunities and/or funding of patient organizations".

The funding can be extensive: "in 2022, the International Alliance of Patients’ Organizations… was almost entirely industry-funded (98%)".  In the same year, "two-thirds of the European Patients Forum’s funding came from industry".

Of course now, we must question why industry is funding patient organisations. "Patient organizations are also powerful actors in policy, research and practice…they ‘have assets that the industry covets’, including the trust of patients and support of broader public". 

This can create potential conflicts of interest.  The authors ask "if the industry is funding patient organizations, then it calls into question: whose voice is being amplified?".  As an example, they state that "industry-supported patient organizations… can provide pharmaceutical companies with an alternative way of ‘informing’ patients about their products as they are unable to market/advertise prescription drugs directly to patients".

Another example is industry co-funding of patient organizations and/or patient
and public involvement initiatives that set research agendas.  The paper notes that "the Irish Platform for Patients Organisations, Science & Industry (IPPOSI), a leading actor in patient and public involvement activities - including research agenda-setting - in Ireland, receives two-thirds of its funding from industry".

Potential conflicts are not always obvious:  "Studies have found relatively high levels of non-disclosure of industry funding by patient organizations. For example, an Australian study found that 48% of a random sample of pharmaceutical industry-funded groups did not disclose their industry funding".

The authors acknowledge the importance of patient and public involvement in research, policy and practice, and the need for such contributions to be adequately reimbursed or remunerated. And they say that "Given deficits in state support for patients and patient organizations, it is unsurprising that they turn elsewhere".

The paper suggests practical steps to address commercial influences on patient and public involvement.  One is evidence-based training for patients and patient groups around interactions with industry, and on governance matters relating to management of conflicts of interest.  Another is mandatory disclosure of industry funding of patient groups, ideally within one open access repository.  A third is that governmental and independent research funders should make reimbursement of patient and public involvement a requirement, thus limiting the need for industry interactions.

The paper concludes that "It is imperative that we have structures, processes and supports in place which are fit for purpose to ensure that patient and public involvement contributors have their voices heard, and ultimately acted upon 

Our research at InHealth Associates (unpublished as yet) has found that a quarter of patient groups in the UK receive pharmaceutical industry funding.

I know that partnership is necessary and often valuable. I ask myself - if I was offered a job or project with a private corporation, would I accept it?

But I also worry that if we don’t talk about this, and don’t bring these issues to light, then the disguised promotion and undue corporate influence in healthcare (over professionals, institutions, policy and patient voice) will continue.