Getting Patients and the Public Involved in YOUR Research
Lynne Maddocks, NIHR CLAHRC PPI Coordinator, talks about her role in the CLAHRC, what PPI is and isn't, and what she can do to help researchers with PPI, before, during and after a project.
Who are you and where are you from?
I'm Lynne Maddocks, I'm the patient and public involvement coordinator, split 50/50 between the Nuffield Department of Primary Care Health Sciences at Oxford University and the NIHR CLAHRC Oxford.
What’s your background, how did you get involved in PPI?
In the past, I've done a lot of work where I've developed skills in terms of both involving volunteers and developing new services.
My last role was in a district council where I was a community engagement officer, and I was also a GP practice manager in Oxford at one point. I've had lots of different roles, both in the voluntary and public sectors.
From your point of view what is PPI, and what isn't it?
PPI can broadly be defined as the involvement of patients, members of the public and carers, in the process of designing and defining research, the management of research and the how the results are shared.
So that means it’s not participants in trials or studies. If they're having a jab or a pill then they are what we call ‘participants’, which is quite distinct from the people I try to recruit.
It's notoriously difficult to describe, that's one thing I would say. Particularly in terms of trying to recruit volunteers; since it’s such a new concept to most people, actually saying what it is can be quite tricky.
Fundamentally, we're talking about people who volunteer their time and their skills, based on their life experience and/or their experience of illness, disability or other health conditions.
So, they don't have to be a patient, they can be a healthy member of the public, who are particularly helpful in any of the more generic studies that we do around things like ‘what's it like going to see your GP’.
What do you think are the top two or three most important things about PPI?
I think the biggest thing is defining the research in the first place.
I think that keeping researchers asking 'is this actually going to make a difference for patients? Is it really going to help people in the long run?’ is a very important part of PPI. Because, effectively, if we're not doing research to improve healthcare, then you have to ask yourself, what are we doing then?
Researchers tend to get converted to it, to see the light, then find that it alters the way that they work and that both they and their research benefit from that.
There’s also a democratic aspect to PPI. It’s public money that we're spending on research, so just as the public has a say in most public sector funding, whether the police or local authorities, so they should have a say in publically funded healthcare research.
If you take the argument that it's a public right, then whether it improves research or not, as long as it doesn't make it materially worse, then there’s a right to be there, and for research to be open and transparent to the wider public.
However, I think the other thing about PPI is how it actually improves research, making it relevant to what the patients and the public think; the people who are meant to benefit from it. By including PPI the research will be both better and more likely to have a translational value in terms of the NHS.
Though that’s not to say there’s no place for 'blue sky' research where the benefits can't be predicted ahead of time. But that’s an altogether different and more complicated discussion!
If I were a researcher what would you say to get me to 'buy into' PPI if I'd never heard of it?
I’d say give it a try with an open mind, with the willingness to do it as best you can.
I often hear things like 'it was really helpful when they changed our patient information sheet', or 'it was really good that we asked them X before we started and it changed what we put in our funding application', those kinds of things.
You’ve got to be realistic – not everyone enjoys the entire process, but most researchers I’ve spoken to say it was really helpful at some level. Because if you do it badly – deliberately or neglectfully so – it will go badly, and then you’ll come to the conclusion that PPI was a waste of your time and everyone else's time. So don't go in it without due preparation, don't go into it half-heartedly, I think is the key. Go in with an open mind.
If you give it a go and you have tried hard to make it work, you've planned and supported people well, and you've communicated well, then it’ll most likely be a pretty positive experience.
If at the end, you felt it wasn’t really for you, then fine. Use that as a later argument of why you're not doing PPI, but I suspect that you will find that if you do all of those things well you will see the point of it. As long as you've thought it through, planned well, and communicated properly you probably will see the benefits of it for yourself. Really it’ll become self-explanatory.
And, of course, because funders are asking for it!
So what can you do to help researchers with and around PPI?
It's very much around having an early conversation with me when you're thinking about your project at the planning stage. Come and talk to me and we can explore how PPI might fit into your project.
It’s about answering questions like: Why is it you want to involve patients? Do you want them to be patients, or can they be members of the general public? What is it you want them to achieve for you? How do you feel they could improve your research?
Then together we can explore what that PPI might look like, how it can actually work on the ground.
We can cost it properly and make sure that an appropriate bid is put in to cover it, and hopefully, if we do that well together it will improve your chance of being funded because the funders are increasingly asking for it. And they will be taking note of how well you are 'doing' PPI.
I can also offer support around how and where to recruit PPI representatives, including from my own contacts. Once people have recruited I can help with the process of how best to support PPI people, information on payments, and so on.
There's also a lot of resources on the CLAHRC website that researchers can access and use. Including ready-made templates for things like adverts, role descriptions, financial record keeping, and working agreements.
What do you think is the most exciting or interesting thing about your role?
I think it’s because it’s varied. It's really interesting to learn about the research that goes on. I do find meeting with individual researchers fascinating when they tell me about what it is they're looking into. And, from my point of view, it only kind of makes sense if PPI is impacting on the research.
So, from my point of view, I effectively have two customers: the PPIcontributors, who I provide some level of direct support to whether information or the training seminars I'm running; and the researchers, who I support in doing PPI – at any level in the organisation. Because for a lot of people PPI is quite new, and they might feel a bit uncertain, so I quite like the variety of the two distinct types of customer.
And it's quite nice that as part of the CLAHRC I'm doing this work across multiple departments within the University of Oxford, with people from very different backgrounds. It's all very varied and interesting.
What’s next on your to-do list?
A lot of the work I do in the CLAHRC is what we call collaborative, between the NIHR infrastructure organisations, which includes the BRC/U, the AHSN, and the CRN. These organisations are all trying to work together to progress something that is common to us all, PPI.
And it makes sense to share resources, experiences, staffing and so on. We also work with NHS England South which includes the Senate.
Part of that is trying to reduce the confusion to the public, who often find themselves helping out many of those organisations, as a single individual, and to make sure we're not all replicating the same thing and wasting resources.
So I've got various joint projects going on there, such as running some joint training, a shared database of PPI contributors. And a few other projects such as trying to set-up a network for sharing best practice and support, and developing a toolkit for recording and demonstrating the impact of the PPI work.
All of these projects are very much on-going, and reasonably complex given the number of partners involved.