Public and patient involvement in research. Why not?
by Thomas Kabir
Thomas Kabir introduces the latest in our series of Talking Point papers: ‘Public Involvement in Research, Why Not’? by Kirsten Morgan. Our occasional series of Talking Point papers encourage people to consider key issues in mental health research, and provides a platform for their personal views.
At McPin we champion the involvement of people with lived experience of mental health problems in research because we believe it improves it. But we know Public and Patient Involvement (PPI) it is not always straight forward. Imagine that you are an experienced researcher meeting for the first time with some people with experience of mental health problems about a research proposal. I’ve been in this situation myself. I could almost hear the researcher thinking;
‘Who is this person? Why are they here? I’ve had years of training. Does this person have the right skills and experiences to contribute to my research project?’
The National Institute of Health Research (NIHR) has long required researchers to actively involve people in research that it funds. But has it really been explained why this should be the case?
Well, Kirsten set out to try and find some answers to these questions. She spoke to a range of researchers, clinicians, and people who work in PPI from a range of backgrounds, not just mental health, to explore what they really thought about it as a concept and how it is done in practice.
For me one really interesting theme that emerged was ‘democracy’. Others have long pointed out that user and carer involvement brings a degree of democracy to the research. There is a rights based argument that those most affected by research, service users and carers, should have a say in it. As most research in the UK benefits from some form of taxpayer subsidy (direct or indirect) there is an argument that the public has a right to be involved too.
But is democracy a good thing in research? Is it even necessary? As one academic researcher is quoted as saying:
“Actual honesty goes back to the beginning – good research requires formal, new ideas – creativity and innovation and all that. And that’s not a democratic process. That may be a process involving many people but not in terms of consensus in decision-making. I don’t know how many people Einstein talked to before Relativity Theory. Of course he wanted input, and then to come to a more appropriate understanding of where PPI sits – what it can do, what it can’t do – rather than having this current tick box exercise where three weeks before the submission of an application it’s– “Oh god we’ve forgotten the PPI””
For some the events of 2016 has laid bare the reality of democracy. When everyone gets to have their say you don’t always get the result you want. It’s not often remembered that doctors initially voted against the creation of the NHS in 1948.
But as Winston Churchill said in 1947: “many forms of Government have been tried, and will be tried in this world of sin and woe. No one pretends that democracy is perfect or all-wise. Indeed it has been said that democracy is the worst form of Government except for all those other forms that have been tried from time to time.…”.
I can’t help but believe that the same is indeed true for research.