I’ve just chaired a familiarly frustrating meeting where the question of how to get patient and public involvement (PPI) really embedded in researchers’ daily lives seemed so unnecessarily complicated. Or at least, the question isn’t complicated at all, but finding an answer seems to be.
It’s a perennial theme: some researchers are completely sold on it, while others need to be persuaded to dip their toes in the water, try it, see whether it bites or whether it can enhance their work, make it better for patients and better, more relevant and so more rewarding, for researchers too.
Kristina Staley has just written a lovely blog about exactly this where she asks: “What persuades people to go on a roller-coaster? Watching from the side, hearing someone else rave about it, having someone else go with them on their first ride? What then are the lessons for encouraging researchers to do involvement? Maybe it isn’t about giving them more ‘robust evidence’. Maybe it’s about giving them the bottle to give it a go. Has anyone tried this kind of approach? I’d love to know if it works.”
The more I talk to PPI “converts” the more I sense that “giving it a go” is what can turn even the most sceptical into advocates. Back to the meeting, where we had gathered a mixed group of involved patients and senior researchers (but far far fewer than we’d hoped) and others keen to learn, all the presentations made the reasons for and advantages of involving patients in research abundantly clear. And while I share Kristina’s wish to see whether getting people stuck in and doing PPI is enough to convince them it’s worth it, I do also think it’s important to find good ways to measure this worth.
Straight after the event, my head spinning from the obviousness of it all up against the abiding challenge of getting it taken seriously, I went for a run. A run very unlike my usual runs for two reasons: the sun shone, and I had remembered to charge my ipod, so was accompanied by the gentle and far from energetic sounds of Dido – or rather, Dido Florian Cloud de Bounevialle O’Malley Armstrong as she was previously known.
And it hadn’t occurred to me until I was plodding my way along the riverbank that some of her more beautiful ballads are about the trials of PPI.
Our esteemed national PPI lead Simon Denegri writes poems – some about PPI (see here for example). And while I wouldn’t attempt to emulate him, I would like to share some just very slightly adapted Dido lyrics that seem to sum up some of the tensions. Firstly – how I fear patients offering themselves to help must feel:
If you won’t fall for me
Then you won’t see the best thing I would love to do for you
Instead you will be missing me when I go
‘Cause I’m bored of hanging out in your cold
When I feel lost I just slip away silently
Quietly take my things and go and think what’s the point
Think where’s the hope
If you find one day
Find some freedom and relief and with this freedom maybe
Maybe you will find some peace and with this peace baby
I hope it brings you back to me
And secondly, how researchers might feel about taking those first steps – as long as we can reassure them it won’t get out of hand:
This land is mine but ….I’ll let you navigate and demand
Just as long as you know this land is mine
I’m ready to let you in – just as long as we know this land is mine.
Hmmm. I’m only quoting Dido. Enjoy the spring.