Is public involvement in health research a disease or a way of life?

Be careful. There’s a lot of it about. You might want to avoid crowds. Spend a few days in bed.

In the olden days, if you talked about public involvement, researchers and clinicians would look at you as if you had caught a disease? Some with pity in their eyes – ‘you poor misguided soul.’ Others with fear and alarm – ‘I’m a researcher get me out of here.’ Maybe some secretly regret the lack of an effective vaccine being available at the time.

Because now it’s too late. The disease has become a full blown outbreak, an epidemic. Public involvement in research is everywhere. I’m surprised it hasn’t become notifiable. It can only be a matter of time before questions are asked about it in parliament (I wish!).

But I’m not talking about this. Rather I’m talking about the growing preoccupation with doing research on public involvement? To test this, that and the other. To prove its worth. To the expense of all else.

We must demonstrate its impact the proponents say. Publish studies, produce papers, get grants. Otherwise we don’t stand a chance in the world of research impact.

And, at the moment, you are more likely to see researchers roll up for a role in public involvement than a patient advocate or good old gritty activist. Often it’s someone who wants to do the job while doing their PhD research on PPI.

Or what about the retired researcher who rolls up to the PPI meeting with time on their hands? ‘Thank God’ you hear the institution say ‘It’s someone who looks like us.’

Many are brilliant. And, yes, we need a range of voices to be part of our community. But more fool us if we lose those who learnt their art through experience, not observation.

What is going on? Who says that should be our ambition?

Well, with a respectful nod to my academic friends and colleagues and those who fear the post-truth society perhaps this thing called ‘research on research’ is becoming too much of an obsession.

Yes, of course, finding out what works and what doesn’t and why is important. But continue like this and we will become just another field of science. Or a rather nasty disease to be studied until it has been controlled or perhaps even eliminated. At best we might just turn in on ourselves and become so inward looking we disappear up our proverbials.

Nothing will happen unless it is researched and evidence-based (you need to say that last phrase in a hushed tone and preferably in front of an altar. How very boring and glass ceiling of us.

Forget the dictionary definition of INVOLVE. Public involvement is as much about challenge as it is about partnerships. It’s not about trying to play the game by other people’s rules but about changing the rules of the game. We don’t want it to to become the goldfish bowl in the corner of the laboratory, we want it to become a way of life for everyone. And our task is to create the space where that challenge can happen.

Does a patient or carer really need to refer to a stack of research research papers to give credence to their experience? Their real experience in an uncontrolled environment I might add. I hope not. Or what have we become.

I suspect if we talked to those who were at the start of it all they might say: In the beginning there was no evidence. If we’d waited for it, we would have been extinct before we’d got started.

Thank goodness they didn’t.

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