Blog: Citizens in research: what’s your story going to be in 2015?

You’d think that Aintree Racecourse, home of the Grand National, would be the perfect venue at which to dwell on the barriers to how we involve the public in research. What with ‘Bechers Brook’ and ‘The Chair,’ fences over which horses and riders stumble and tumble every year. It would only be right to follow suit, would it not?

Not if you are the North West People in Research Forum (NIPiRF) it’s not!  Such is the positivity that oozes through their veins, they would never allow us such self indulgence.  No, they would support us to find ways of jumping those fences – together.  As they did yesterday, at their ‘open space’ (I wish every meeting was run like ‘Open Space.’) catalyst event focusing on the question of: ‘How can we demonstrate the benefits of public involvement in research?’

It was my task to begin yesterday’s event with what they call a ‘provocation.’  Just to get people going.  So I chose to share some personal thoughts on the issue of evidence in public involvement. These are my main points:

In the forthcoming report of the Breaking Boundaries review, one of the six common goals that is advocated for public involvement across NIHR is: ‘Evidence of what works should be accessible to others so that they can put it into practice.’  The perceived lack of evidence about the impact of public involvement on research has been used as an argument against us for too long.  It is now a red herring in my view.  We do have the evidence.  However, we have not been good at gathering it and serving it up in ways that are helpful and persuasive to others.

It is in all our interests to grow this evidence.  For me we need to show how public involvement – or, more importantly, the knowledge that patients and the public have gained through their experiences, is making a difference to: the quality of research; the quality of research new treatments and interventions; the quality of the knowledge available to others and; most importantly, the quality of theirs and other people’s lives.

We need to think more creatively about the presentation of this evidence.  But what does this look like? Different audiences will need different sorts of evidence.  At the very least they will need evidence presented in a variety of ways: words, pictures, numbers, social media, acadmic papers etc.,  How about this for instance.

We need to be careful not to create a hierarchy of evidence in which the paper published in an academic paper is regarded as the gold standard of evidence and all other types of evidence are dismissed.  We must never doubt the power of the well-crafted and well-told patient story in moving an audience in a conference room, a newspaper or even a text book.  And we should celebrate those who are embracing a spirit of co-production to produce and showcase these stories.

Nor must we inadvertently encourage the professionalism of evidence creation such that the patient’s voice is taken away from them and then manipulated by others.  We should support patients and the public – and, indeed, researchers and clinicians as well –  to ‘reclaim their story’ in public involvement and drive a harder bargain about how it is told, by whom, to whom.

It is important for us to respect the role and importance of evidence in helping us promote and advance public involvement. And yet, wouldn’t it be terrible if we lost the art of knowing a good idea when we saw it and having the confidence to run with it?  That takes judgement, a quality that seems ill-thought of these days and certainly not well taught.

Finally, I hope that people will not just think about their own story but also about the story that they wish to tell with others.  We are stronger when working together. We are louder when reading from the same script – co-produced of course!

What story are you going to tell in 2015?

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