I am sure you can imagine the following scenario even if you haven’t witnessed it in person.
A football game is poised delicately at 0:0. The home side get the ball and give it to their striker who dribbles past the away side’s last defender. The striker has only the goalkeeper to beat and surely win the game. But the defender catches up. He nudges the striker as he enters the penalty box. The striker falls to the ground all too easily. Penalty!
The home fans cheer and applaud. He did it for the team, OUR team. The away fans scream and boo at the cynicism of the player. How dare he?
I was thinking about this scenario after hearing Vivienne Parry’s excellent documentary on BBC Radio 4 last this week: ‘Patients doing it for themselves,’ about participant-led research. I am sure you can still get it on BBC iPlayer http://www.bbc.co.uk/programmes/b04grspl
Do listen. Public involvement could certainly do with the airtime.
In fact wouldn’t it be great to one day hear presenters hand over to their ‘Patient Correspondent’ or, indeed, for the presenters themselves to be a patient? God forbid we might even have a living, breathing patient present a health research programme, a whole series or be guest editor of the Today programme.
It’s certainly clear from the evidence given to the Breaking Boundaries review that people want us to do more to raise public awareness of public involvement in research. As a movement, they say, we are under-utilising traditional and social media in ways which would turn us from being an interesting phenomena, a curiosity of research, into a topic of discussion at the family dinner table or, indeed, pillow talk.
But I also wonder if we are being somewhat naive about how this publicity is going to happen – or should happen – that we deserve it simply because we are doing a good thing, performing a public service.
Even then, it is striking how we struggle to organise ourselves to come together and make this happen. Especially when compared to our professional colleagues.
For a while now I have been involved with a group of medics who have been setting about the task of establishing a new field in medicine. It has been interesting to see them forget come together to make it happen and with great focus. They are working with patients, other professional groupings and their relevant Royal College. Personal and institutional agendas are being set aside. Nearly two years on, it has been incredible to see the progress they have made.
Public involvement is also an emerging field if you like. It is barely 20-30 years old. Yet we arguably do not demonstrate the same single-mindless. And sometimes we are fighting ourselves or clambering over each other to get attention.
I was telling a friend lately that I have been reviewing a fair number of papers and articles for academic journals. In every case the piece has been rejected based on the reviewer comments.
Many of my fellow reviewers are patient leaders. Their critique has often been sound (but not always). The resulting decision by the editorial team has been technically correct because of it. But is it the right one politically for us? At this point in our development is the airtime not of greater value than whether it makes the grade academically? Perhaps we should have scored it differently as reviewers? To give it a better chance of publication. Mmmmm.
When I told all this to my friend (who has nothing to do with public involvement) he said: ‘Sounds like you are all being a bit naive: shouldn’t you be a bit more cynical and learn to play the game better?’
So what do you think? Should we dive in the box? Or would that be an own goal?