Co-Production and PPI: Doing It Well in Rheumatology

I'm conscious that probably for some of the people listening to this, um, you'll all be on very different, um, journeys with, um, patient participation and patient involvement with the work that you do.

So, um, over the course of the conversation, we're gonna talk a bit about, uh, what do we actually mean by patient involvement, then we're gonna talk a bit about some of the benefits w- or the very clear benefits of involving patients, um, which I think, um, both Charlotte and Lynn will be able to, um, expand on further than they already have.

And then some of the challenges faced, and then hopefully at the end of it, you will be, um, have some key, key sort of takeaways and tips to be able to go away and think about how you can implement this within your own work.

So I think, Lynn, I'm gonna come to you first and ask you, what do we actually mean when we talk about patient involvement?

So the most widely used definition is from Involved, and involving patients is it's something th- that's done with people, not to them or about them or, or for them.

So it's like a genuine partnership, working together in this partnership, not doing something for them.

Thank you.

And then with that then in mind, Charlotte, where does that fit when we talk about phrases such as consultation, co-design, co-production, patient-led research? How-- What, what is the distinction between these different terms?

Thanks, Ros.

I think it is really important to talk about what those terms mean because as we'll talk about later on, I'm sure it's, um, one of the most important things when you're working with patient partners is to be clear about what you're trying to achieve, both with them and also in terms of your own aims and expectations.

So, um, when breaking down these terms, I think of consultation as something that you might do where you ask a patient about a draft leaflet that you've already developed, for example, um, where you've got a pretty good idea of what you want to say.

You've mostly written it, and you want to check if the content is okay.

That model is quick, um, but it's not as powerful as asking patients, is there a need for a leaflet, or how can we improve their accessibility to a service or to a research problem in the first place? So it really is just asking someone for their opinion on something that you've already developed.

When we talk about co-design and co-production, there's, for those experts listening, there's a huge amount of academic literature about this, but I think we can get bogged down there.

What we mean when we talk about co-design is involving patients in the development of something, um, and that is where we think about what that thing might be together.

Um, so for example, in our work, we've developed some BSR, um, choosing widely recommendations that were published some years ago, and we developed what those would be with patient partners.

Um, then there is co-production, which is where you do the making as well as the designing with patient partners.

So an example I have in that regard is in relation to a video where patients identified that they didn't know how to self-examine for tender and swollen joints and rheumatoid arthritis.

So they came up with the idea, and then we developed the video together.

So we literally co-produced it.

And then finally, in research terms, uh, patient-led research is, um, along the lines of work that Lynn and I had done together, where Lynn had an idea for a research project.

We applied for the funding together, and we conducted that research together with her as a peer researcher.

So a very kind of long line from very tokenistic minimal involvement to fully integrated as part of the research team.