PPI Q&A: Professor Raymond Fitzpatrick
26 July 2017
Patient and Public Involvement (PPI)
Professor Ray Fitzpatrick is Professor of Public Health and Primary Care at Oxford University’s Nuffield Department of Population Health, and Fellow and Dean of Nuffield College.
Until recently he was NIHR Programme Director for Health Service and Delivery.
His group developed patient reported outcome measures for joint replacement surgery that are not mandated for services to NHS patients.
He is also assistant director for a Department of Health Research Unit (Jointly with Personal services Research Unit, London School of Economics & Kent University) to assess quality and outcomes of health and social services for long-term conditions.
In addition to his other responsibilities, Ray also leads the 'Patient Experience and Patient Reported Outcomes' theme of CLAHRC Oxford.
You’ve been involved in health-related research for most of your career, what pulled you into it?
It really started with my PhD which was looking at, what were thought to be, bad referrals by GPs to neurologists.
The work involved talking to the patients and it was very clear that both the neurologists and the GPs who referred patients varied enormously in how skilled or unskilled they were in finding out what was actually bothering their patients.
So, some patients ended up in neurology clinics, not because they needed to be there, but because of failures in communication.
That's what really got me going in this area – applied health research where the patient is the principle voice or source of insight. Asking questions about what do patients want out of care, and what benefits do they feel they get out of care?
And, in a way, this got me into the whole subject of what we now call PPI. We're talking about the late 70s at that time so PPI, as a name, didn't exist then.
Could you give me an idea about a project you're doing at the moment that has some element of PPI?
For the last three or four years, we've been thinking about long-term (chronic) disease.
We've been developing the 'long-term conditions questionnaire', a simple questionnaire with 20 questions that, regardless of what or how many problems people have, lets them say how it impacts their lives, and how might their lives be made better.
And how have you involved patients in that?
We worked with people with long-term conditions – they became a partner, really, in actually doing the work.
It wasn’t always easy because the work we're doing is complicated, and so it required patience on both sides.
We had to explain the rationale and processes of what we’re trying to do and how. While the patients had to communicate what was often a lifetime of experience living with a long-term condition that we hadn’t. It wasn’t a simple straightforward conversation.
But, I think, that got us to a more fine-tuned and appropriate research programme in the end. It's a very iterative process, creating, getting feedback, refining, getting feedback, and so on.
So, did you find that rather than being arms-length anonymous ‘patients' it felt more like it was actually real people?
Yes, it was very concrete.
Another example is a patient advisory group we set up to work on neurological services for people with MS, Parkinson’s, and so on, and it was quite a moving experience.
We worked with seven or eight patients with a neurological condition or people caring for someone with one. In some cases, people were severely disabled so even finding the right kind of place to meet, that was accessible for everyone, could be hard.
Unfortunately, one of them passed away during the study, which was a very powerful and graphic way to learn what it’s like to live with a neurological condition.
What about refining what research is done?
Well, the other side of my life has been managing research, chairing research committees and so on, helping to decide what research we should do. And PPI has had an increasingly strong role there.
What's happened in the last 20 years is that members of the public, who started off being invisible in these things, are now sitting on the top table with an equal voice to the scientists.
That has been quite challenging, getting from where we were to the public now having an equal voice. I believe that now, in the areas that I work, we've got there. They are an equal voice.
I think it's been an incredible journey.
What sort of things did people ask on these committees?
The questions they ask are absolutely brilliant.
Recently I was chairing a health service research meeting for the NIHR and the patients would always ask a really obvious question that none of the specialists had thought of: if this study is done, would the NHS ever actually implement the results? Is it feasible?
And very often that was the killer question – not the methodological sophistication of the study design or whatever, but would it ever be actionable?
With that kind of experience how do you feel about how rapidly results from studies are then taken up and actually used?
That's always a frustration for researchers.
It's frustrating not just for us, but the PPI people as well. Just as we must learn from them, they then have to learn about the constraints of research – very little ever changes in the light of a single study, it's an accumulating picture from all the related evidence that, in the end, impacts the real world.
Also, one has to recognise that research is only one input. There are others like politics, resources, stakeholder opinion and so on. It's often a long story from discovery – rarely less than a dozen years – to its being used more widely. This is incredibly frustrating, but it's hard to imagine it being otherwise.
So, what gets you out of bed in the morning to come and do this, what's the motivator, and has it changed over time?
It has changed over time. I started working in this field in the mid-70s when being a social scientist in the context of biomedical research was more challenging. It was a challenge to be taken seriously, and to make people see that anything worthwhile could be learnt.
I think that's changed now and we all recognise the complexity of the health problems we have to deal with, and public health and social science all have their roles alongside biomedicine.
What gets me out of bed? I suppose, ultimately, the challenge.
I like difficulty. I like to be forced to think and – within limits! – to be challenged to think of solutions. They may be scientific, they may be political, or they may be interpersonal.
I'm at the later stages of my career now and the idea that I wouldn't wake up and have some interesting challenges is more daunting!
And how about outside of work? What challenges do you put yourself up against there?
Well, I have to say that when I'm not at work I really don't challenge myself. So, I absolutely do not do ambitious global travelling or impossibly risky hobbies.
My main thing, really, when I'm not working is finding time to do things with my wife.
She's in a similarly challenging job, a senior academic at Oxford Brookes University. So, when we're not working, the main thing is finding time together, whatever it might be: gardening, listening to music, or going for walks.
Probably not being terribly ambitious, but finding time to enjoy life together.