Could long-term conditions reach the point where patients are actually driving the research agenda?

by Kate Gilbert, PhD, Project Lead for PMRGCAuk’s Rheuma Research Roadshows

I’m writing this on a train on a February evening, feeling worn out but excited, a state of mind familiar to any development worker who has just launched a major project. In this case, the PMRGCAuk team have just held the first of our Research Roadshows, funded by a grant from the Wellcome Trust, focusing on Giant Cell Arteritis and Polymyalgia Rheumatica. The roadshows are going to take place at research hubs around the country.  To be honest, there aren’t many of them. Sites of special scientific interest – that is, interest by scientists – into these under-researched conditions are thin on the ground. But our first day in Southend has demonstrated just how dedicated they are and, yes, excited about “our” conditions.

We had promoted the roadshow around our networks and thought we would be doing well if 25 people showed up. In the event, there were more like 80. All the seats were used up and the punters just kept coming in.  Proof if any were needed that patients are passionate about finding out more about their conditions and what research is taking place.

As patients, we need to know what researchers are doing, we want to feel that the breakthrough is just around the corner, that new treatments, particularly alternatives to steroids, are on the way. This afternoon I fell to thinking too about the ways in which clinicians need us. Naturally, we are needed to be the subjects of research, but it goes much further than that. In the development of new guidelines using GRADE methodology, patients articulate what outcomes are priorities for them, thus shaping clinical perceptions about the directions research should take.  Recent years have seen an upsurge in clinical interest in qualitative studies of the patient experience, and this is in no small measure due to the involvement and access we have been able to secure. From being almost unknown in research circles five years ago, we are now the ‘go-to’ organisation for endorsement of new project bids for PMR and GCA. Could long-term conditions reach the point where patients are actually driving the research agenda?

Key to this development is the support and mentorship that we receive from other organisations in the ARMA ‘family’.  You may not be aware of it, but we are watching you, learning from you. We’re growing up and learning fast!

PMRGCAuk began back at the start of this decade aiming to provide support and information. This continues, but our role has grown and matured so that we are now a bridge between the lay world and the clinical researching world, between the perception of the individual that their condition is bounded and defined by their own experience, and the perceptions of the researching doctors who have to think in terms of populations. We have the responsibility to build trust between doctors and patients and to be advocates for our shared interests.  We have moved on from representing patients to researchers to facilitating exchange and engagement between these two groups.

Details of upcoming roadshows can be found here.