With thanks this week to BBC Radio Oxford for giving us airtime to promote the activities of PAIR and the wider world of patient and public involvement (PPI) in research. And to Philip, the patient who volunteered to join me on the show.
Well, not strictly speaking “volunteer.” Philip’s involvement was a good illustration of my late mum’s favourite saying that “No good deed goes entirely unpunished.” He was so helpful around the mid-term review and got to know the BRC’s work so well that I asked him if he’d do this interview.
Our main feeling was that 10 minutes is nowhere near long enough to do justice to the complexities of PPI, but also that the interviewer seemed keen to elicit from us what problem PPI was trying to fix. And this led us to wonder whether on balance PPI has come about because there was trouble at mill, or out of a recognition that something that was working well could be improved.
It’s certainly true that the mental health service user movement – where much PPI has its roots – saw a patient population rise from the potentially crushing mix of illness, stigma and controversial treatments to create what is today arguably the most vibrant area of true patient partnership in research. So yes, there, PPI addressed a problem – or several of them – and emerged victorious. And it’s worth mentioning too that it is from the mental health research world that we have the most robust evidence that involving patients in designing clinical trials makes them recruit to time and target – this is a very real problem that now has a compelling solution.
And so too in research priority setting, as I explained in the interview. About 15 years ago, when asked what research would most help those with osteoarthritis of the knee, patients and professionals were unenthusiastic about the plethora of studies of drugs, instead keen to see evaluation of the effects of physiotherapy, surgery and educational and coping strategies. So, here, PPI helped focus the research agenda on what matters to patients, and on such foundations the work of the James Lind Alliance (JLA), so successful here in Oxford, was built. Indeed, it was gratifying when the producer rang me after the show to ask for more details of our active JLA surveys so the BBC could promote them on news bulletins throughout the day.
It certainly seems fair to say that PPI helps focus research on what matters to patients and ensures it happens in ways that they want, and that this isn’t always so. But we mustn’t only see PPI as a troubleshooter.
Philip was so articulate about his reasons for getting involved following diagnosis of and treatment for cancer. As he said “the day of diagnosis changed my world, but was just another day at the office for the doctor.” Whether or not a given doctor is also an active researcher, all are encouraged by General Medical Council and other guidance to get involved in research when and if they possibly can. It’s by heeding the experiences of people like Philip that researchers setting out on the journey can make their work the best it can be.
Listen here until Tuesday Nov 11, from 3h39mins: http://www.bbc.co.uk/programmes/p029kl2y