I sometimes get asked questions in the course of this job that niggle away long after I’ve reassured the person who asked them with what I hope was a measured and helpful answer. I thought I’d share a recent exchange with you, and much welcome comments.
The conversation, between a researcher and me, went a bit like this:
“Do you do any sort of screening to make sure that patients who want to get involved are genuine?”
“Sorry, I don’t quite….?”
“Well, what sort of process do you have to make sure their views are sensible?”
And while the researcher admitted to being embarrassed that her question might be unpalatable, and my gut reaction was to reply “Can you tell me the process used to ensure that researchers have sensible views?” in truth, I knew what she meant.
I have on occasion failed to encourage interest from a patient because they seemed to have a very clear but (to my mind) muddled wish/theory/plan/agenda. Writing that down feels like a terrible confession, because I know full well that I may be a poor judge, and I truly believe that everyone has their story. But I also know I have shirked from engaging with those that desperately needed to be dealt with because I simply didn’t know how.
So, with a degree of sympathy for the researcher’s question, I started to unpick it, and fast realised it wasn’t a question about patient and public involvement (PPI) at all.
We make the assumption that most people most of the time get on with their jobs (whatever they are) with a mix of dedication, frustration, reward, oomph and down days, alongside whatever other influences make them who they are: religion, politics, money troubles, a stiff neck, a bad night’s sleep, worries about an ill child. And much the same surely applies to involved patients, bringing their expertise and experience as well as a host of other influences such as and beyond those listed above?
But, I hear my questioning researcher cry (echoing worries that at times I share), we can’t base what we do on one person’s experience – that’s anecdote not evidence and it’s not how we work.
So this is one of the reasons why good PPI reaches wide: it happens naturally in the research world where places like the BRC unite like-minded folk in shared endeavour, and conferences, meetings and publications enable broader discussion and challenge. Good research is built on all this, and so, inch by inch, it progresses.
And, I’d argue, better research includes end users – patients – in this inching. And just as the research world doesn’t base its activities on the views of one person, we need to ensure we don’t listen only to the most vocal patient, but find imaginative ways to engage with the seldom heard. I will add one proviso to this which is that while I can and do worry about the need to – and difficulty of – reaching wide, patients have suggested to me that concerns are likely to be broadly similar between different people who have had a shared experience. So yes, diversity of reach and input matter a lot, but it may also be true that, as one said to me, “some PPI is better than no PPI.”
But, back to the original question, of course we musn’t only hear and heed one view, which may not be “sensible.” But we also need to be open to the unexpected. One of the most powerful things I have seen in this respect is James Lind Alliance final workshops where, after months of mostly “remote” collaboration, patients, carers and clinicians get together and tussle with each other, until consensus about what research questions matter most wins out. Sometimes it’s the “professionals” who back down, sometimes it’s not. And it’s challenging, but ultimately very sensible.
I can see exactly why some researchers get frustrated with PPI, having been brought up to believe that evidence is king and feeling beleaguered that anecdote might trump this, especially when some anecdote appears neither helpful nor heedable. But who decides that is really tricky, hence back to the importance of debate and consensus.
So, while the question that sparked this blog seemed to demand a neat answer, on reflection, I don’t think there is one, nor was the question about PPI. It was a hard question about life. About how we negotiate with those whose views differ from our own, about how much time we have to engage and debate, about how, in the end, we can best manage to rub along together. These are questions we all face, all the time. They are not unique to PPI, and, whether professionals, patients or both, we need to learn to handle them as imaginatively, as well, as we can.
JM Barrie’s rule is a wise one, here as elsewhere: “Be kinder than necessary because everyone you meet is fighting some kind of battle.”