The Student Patient Alliance, whose development is described in a new paper published in BMC Rheumatology today, is a pioneering Birmingham initiative in patient and public involvement in research (PPI) which connects PhD students and patient research partners.
The scheme aims to integrate PPI in discovery research training, supporting the development of students’ skills in patient involvement in research and public engagement. While the integration of PPI in clinical research is now widespread, meaningful PPI in pre-clinical, discovery science research is more difficult to achieve. To address this gap, this initiative explored integrating patient and public involvement into the training programmes of discovery science postgraduate doctoral students. The pilot, initially rolled out by the Rheumatology Research Group at the University of Birmingham, was remarkably successful, so much so that it has now been adopted by other research centres in the region.
Most of our students are undertaking laboratory-based scientific research, and often have no previous experience of having an inflammatory musculoskeletal disease. Our patient research partners provide valuable insight into patients’ needs and priorities for research, helping students to understand the importance of their work and develop effective ways to share their findings with patients and the public.Dr Marie Falahee, Lecturer in Behavioural Rheumatology, Institute for Inflammation and Ageing
The Student Patient Alliance was led by Dr Marie Falahee, Lecturer in Behavioural Rheumatology at the University of Birmingham’s Institute for Inflammation and Ageing, researcher at the NIHR Birmingham Biomedical Research Centre, and academic coordinator of the Birmingham Rheumatology Research Patient Partnership (R2P2).
Dr Falahee commented: “Most of our students are undertaking laboratory-based scientific research, and often have no previous experience of having an inflammatory musculoskeletal disease. Our patient research partners provide valuable insight into patients’ needs and priorities for research, helping students to understand the importance of their work and develop effective ways to share their findings with patients and the public.”
Pioneering innovation in PPI
A pilot version of the scheme was implemented in response to feedback from patients involved in the Versus Arthritis-funded Research into Inflammatory Arthritis Centre of Excellence (RACE). They highlighted the importance of training about PPI for researchers from the earliest stages of their career. The pilot scheme was valued extremely positively by the students and the patients who took part, so it was subsequently rolled out across all PhD students funded by RACE and the Medical Research Council/Versus Arthritis-funded Centre for Musculoskeletal Ageing Research, and has since been adopted by other research centres, such as the NIHR Blood and Transplant Research Unit in Precision Cellular Therapeutics at the University of Birmingham.
Within the Student Patient Alliance, doctoral students collaborated with their PPI partners to co-produce outputs and activities including award-winning posters, published online abstracts, exhibits for public engagement events and oral co-presentations. PPI partners were also involved in advising on research design, analysis or findings.
Commenting on the scheme, a doctoral student who took part said: “It kept my focus on the bench-to-bedside aspect … being basic science researchers, we’re really focused on getting the right research design, having the right experiments, … and we tend to forget that the only reason that we’re doing this is to actually improve patients’ lives… And it does bring my motivation up quite a bit, particularly if things aren’t going terribly well in the labs or if I’m in a transition part of the project.”
The initiative was not only beneficial for students; patient and public research partners also found the programme valuable, with more than 80% of participants reporting they are likely or very likely to recommend the experience to others. PPI partners enjoyed acting as a mentor to the students, learning about their research and contributing to their personal development.
A PPI partner commented: “… there’s almost a feeling of excitement that when we next meet up … - I’m interested to see, has that line of research gone further. And maybe with everybody that’s studying and working it’s quite good to have some positive feedback, and I think the patient partners can do that. Because you do feel this gratitude for the fact that somebody’s doing something that might help you, but probably more likely help other people.”
Dr Falahee concludes: “The Rheumatology Research Group at the University of Birmingham has a long track record of excellence and innovation in PPI, and we are fortunate to be supported by an exceptional patient partnership group. Collaborating with patients improves the quality, efficiency and relevance of our research, and the Student Patient Alliance is ensuring that our PhD students are well equipped to implement PPI effectively as they progress through their research careers. We’re delighted that other centres are following our approach, and hopeful this will help overcome some of the challenges of effective PPI in laboratory-based science.”