Patient and Public Involvement (PPI) can refer to any activity in health – policy making, forms of organisation and design all count. But I am concerned here with PPI in research. The letters are off-putting – they also refer to an indigestion remedy and a bank scam! What do they actually mean in the research field? The initial idea was that patients and the public could be involved in research as researchers rather than as the objects of study. That is, patients and the public could be involved in specific projects through to much wider collaborations. This was said to make studies more relevant and more attractive to the public at large.
There is a history to all this and it now has an ending. In 1996, the Department of Health set up a unit called ‘Consumers in NHS Research’ and it had a support group with patients and the public, health professionals and researchers represented. By the way, members of the support group could only have one of these identities. So you could not be a patient AND a researcher at the same time. This thoroughly annoyed those of us who were trying to meld the two identities as part of our work. Fast forward to 2005 and a reorganisation of health services including research. All NHS research was now funded by the new National Institute for Health Research (NIHR) and it had a ‘PPI’ programme. This one was called INVOLVE and the support group was replaced with the INVOLVE Advisory Group. There was also a small team of full-time staff. INVOLVE was closed in 2020 and there are reasons for this.
INVOLVE covered all medical specialities, public health and social care research. At one point there was quite a contingent of mental health user researchers on the Advisory Group. We were “a feather in their cap and a thorn in their side”. I’ll explain why. I was a member of the Advisory Group between 2008 and 2013 and I was also ‘PPI lead’ in two big research collaborations where I worked. So I have some ‘insider knowledge’ of this world but I cannot disclose it all publicly.
INVOLVE was influential which might have had something to do with the fact that the DH funded it very generously. Projects had to show they had ‘Patient and Public Involvement’ before they could be funded. This was not monitored throughout the lifetime of a project however. But other countries were impressed and wanted to copy us.
The unofficial history of INVOLVE
INVOLVE represents itself as making slow and steady progress. But it was riven with fractures. Key figures began to use language in a very slippery way – involvement, engagement, participation, recruitment – as if all these terms meant the same thing. In a document called Going the Extra Mile they highlight 6 main aims. The term ‘involvement’ appears in each and means something different each time. In addition, the original aim of research by and not on patients and the public sat alongside a commitment to getting people to ‘participate’ in research, that is, become the objects of investigation. There was an annual “It’s Okay to Ask” day where INVOLVE worked with health providers to encourage people to become subjects in research. These two things are the exact opposite of one another. On top of this, there is a form of enquiry called ‘participatory’ research and some people actually confused these two very different activities.
Another point is that early on there was a call for INVOLVE to show that it was having ‘impact’ in the real world – in the wild. In the literature around this – and there is a lot – mental health survivor researchers hardly figured at all. We were wise. One paper estimated that it takes on average seventeen years for research to change things even when it does. Nobody seemed to be aware they were being asked to do the impossible. INVOLVE had been going for 6 years when this point became so important. There are other details but INVOLVED had positioned itself as the leader and model in user involvement in research. But there are other approaches and they never refer to one another. A good example is Science and Technology Studies which disrupts this whole ‘impact’ perspective. This happens a lot in the academy – silo working.
Practicalities
I have always insisted that people be paid for ‘involvement’ activities but this is by no means universal. So to do involvement work you have to be self-sufficient financially. You also need time on your hands, for example, no job, no caring activities. You need to be in easy reach of venues too. A car helps. Where I worked we drew up an elaborate Payment Policy for Involvement – increasingly difficult to implement because of university bureaucracy. But just practically, is it any wonder that the people who do this kind of thing are mostly older, retired, middle class and white? But of course there are other reasons too.
What difference did it make?
As I proceeded with this work, I realised that the most we could do was ‘tinker at the edges’. An academic reason for this is that certain methods are prized in psychiatric research. The more prized the method, the more likely you are to get funded. And patients and the public cannot change the method adopted by the main research team. These prized method put very heavy restraints on what you research and how you do it. For example, qualitative research is not valued by the mainstream. But if you want to know how people are living their lives, the challenges they face and how they address these then you have to talk to people – systematically – and not deal purely in numbers. I was once asked to write a short piece for a very high profile journal. The editor told me that I would have to deal with the objection that user involvement in research was “anecdotal, biased and conducted by people who are over-involved”. A lot of researchers have a personal commitment to what they are doing but it is hidden. And that charge is brought against qualitative research generally (I do not say that all qualitative research is good research).
But there is more. Simply put, the involved public has to understand research-speak. And it is a very peculiar language. Many people lament that ‘the public’ are not interested in research. First off, why should they be? They may be living in terrible circumstances, relying on welfare benefits, in poor housing or food poverty or in an abusive relationship. But they know that their conditions of life and the language they use is alien to that of academia. And academia holds the power here and its interpretations and conclusions are what counts. Sometimes service users involved in research are given some ‘skills training’. But we are comparing a 12 hour ‘how-to-do-it’ course with an education in research that commonly lasts 7 years. Becoming a proto-researcher is not the only way to do it though (see the Research and activism section). I have actually run such a course but stopped after 2 tries because it was an abject failure and the fault lay with me and my colleagues, not the service users.
Community involvement
Before it was closed INVOLVE promoted ‘community engagement’ which again was largely a failure because of the reasons above. But where I worked there was someone who really did know how to do this. We held an annual ‘Together in Research Day’, had a newsletter of that name and ran workshops in between. I came to think that this was a model of how to involve the public in research. Two people on a Steering Group, with no access to informal networks or an Advisory Group that meets three times a year just will not cut it in terms of making a difference quite apart from the practical and academic reasons I have given.
My disenchantment with PPI, whatever it means, led me in the end to argue for at least some independent user-led research. There is a moral imperative here. But it is very difficult to have a ‘seat at the table’ when fundamentally you are critical of the very premises of mainstream research. Of course, not everybody is critical and at the same time some people were prescient and never became involved in these activities in the first place. PPI represented itself as the way to do user involvement in research but of course there were other things going on too. It thought it had a monopoly but that is far from so.
Going forward
PPI presents itself as having no theoretical basis but I have tried to surface some of it here. It also excuses itself from any question of power. In the Epistemology section I will take this forward and engage in some of the theoretical issues that do or should preoccupy us and how they are bound up with power, especially in mental health.