This is a big week for us here in Oxford, as it sees the culmination of a major patient and public involvement (PPI) project – a James Lind Alliance partnership to identify what research matters most to those at the sharp end of hip and knee replacements.
And by “the sharp end” we mean the health professionals, but also patients and carers. Purists say the JLA isn’t PPI (professionals are in the mix) but for me that’s what PPI is all about – the JLA is partnership working at its best, and so is good PPI.
The research priorities identified by the hip and knee partnership will be published soon so more about that, and the JLA here soon. But today I want to dwell a bit more on this issue of purity.
I worry about it a lot, and one of the forms it takes is this: when we do PPI, we involve patients in research in a whole range of ways. And that’s great, but what about the ones we don’t involve? What about the people who’d rather be in the pub or playing football, who aren’t well enough to play a part, or who’d rather just let the “experts” get on with it on their behalf? If we can’t get them involved, can we be sure we are really developing a research agenda that works for them? I aired this question at a conference earlier in the week, asking how we can be sure we are enabling patients to develop the research that’s right for all. I think the purist in me said something like “If we can’t access all views, is there any point in accessing any?” It’s the kind of tempting train of thought I sometimes think might free me to give up on PPI and head off to the pub.
I went on to say something about how if, for example, we do research on hip replacement, a good outcome for some might be getting back on the tennis court, for others it’s about freeing them from decades of pain. Unless we know we’re working with people at both ends of the spectrum, can we be sure we’re doing the right research in the right ways?
It’s the kind of thing I talk to PPI colleagues about a lot, rarely reaching any useful conclusions. And on this occasion, as so often, it was a patient who cut through my fruitless rambling.
“Instead of worrying about individual differences”, he said, “What about just aim for the pinnacle in all cases? My new hip might mean I can play cricket and football and fly to the moon for that matter. Truth is, I won’t choose to do any of those things, but my value to the process will have been about raising the bar as high as it can go.”
It was clear, insightful, honest and challenging. Just what the doctor should have ordered.
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