I’ve always struggled with how to reconcile evidence with anecdote and perhaps never more so than in the world of patient and public involvement (PPI) in research.
If research is for patients, surely it’s crucial to do it with them? At its simplest, if we don’t know what matters to them, and how they want it tackled, we risk setting a research agenda that does no good and is full of studies no-one wants to join.
Then again, others argue “leave it to the experts” and would doubtless take me to task for using words like “surely” and phrases like “at its simplest”. They want hard evidence that PPI makes research better.
And then it starts to get really tricky: to show that PPI matters, we need to define “better”, and we need to decide who can best judge this. For some, the proof of the research pudding is in the funding. PPI has had a positive impact if it makes projects fundable – while for others “better” means making studies appeal to participants. Others want to see clear patient benefit. But some estimates suggest there could be a lag between research and impact of up to 15 years, so the “patient” in “patient involvement” takes on a whole new meaning. Fifteen years is a long time to wonder not only whether PPI has made an impact, but whether it’s a positive one.
So it is that I recently heaved a huge sigh of relief with the addition to our team of Dr Joanna Crocker, the snappily titled “BRC Research Fellow in Evaluation and Impact Assessment of Patient Involvement in Research”. Joanna’s remit is to complement, and go beyond, studies that have to date assessed the impact of PPI on what sort of research is done and what happens as a result.
We have an expert working group to guide her, including patients and two of the country’s top minds in PPI impact assessment (I hasten to add I am not one of them), and we are working together to ensure that her studies address the really knotty questions. One avenue we are hoping to explore is what sort of PPI is used when people are setting up clinical trials, and whether it’s possible to quantify the impact of this involvement on patients’ desire to take part. It’s only a tiny corner of all the places where the impact of PPI may (or may not) be felt, but it’s an important one.
Some folk say it’s just “right” to do PPI – that it’s common sense, and an ethical imperative to ask those whose money you are spending what they want done with it. Given the vast complexity of the NHS’s almost £100bn budget, not to mention all the other public, private and charitable sources of research funds, I’m not sure we can really be expected to be asked to determine how it’s spent. But I am sure – call it anecdotal evidence if you like ( although in some cases the evidence emerging means we can safely detach the anecdote) that working with those at the sharp end of research in imaginative ways is bound to make research, and, crucially, patients’ lives, better.
If you want to share your views with Sophie email: Sophie.Petit-Zeman@ouh.nhs.uk