implementing Patient Research Partner Engagement in Research (iPRePaRe)

There is a strong history of involving PRPs in rheumatology. However, important gaps remain, particularly in the implementation of patient research partner (PRP) values and principles across the research spectrum. Differing expectations amongst stakeholders about the role of PRPs may not only act as a potential barrier to initial involvement, but also ongoing retention of PRPs. PRP roles may well have been limited and defined by decisions made by the research team. These tensions are, at least in part, attributable to power imbalances in the relationship between PRPs and researchers.

Identifying barriers to PRP participation and any differences in perceived roles, usefulness, and expectations between PRP and RMD researchers across different research and country contexts is important. This will provide an evidence base to ensure consistent implementation of high-quality participation across studies in Europe. It will also act as a baseline to measure the effect of initiatives to improve PRP participation in research.

We aim to identify barriers to patient involvement across the spectrum of rheumatology and musculoskeletal (RMD) research, and differences in perceptions and expectation between PRPs and RMD researchers with respect to the role of PRPs.

We will produce a report which will summarise the key findings of the study, including a description of PRP involvement in RMD research and how this varies across contexts (e.g., research settings, countries).

We will create an innovative video blog summarising our findings. This will serve both to disseminate results and as an educational tool to support PRP involvement in RMD research across the research cycle.

iPRePaRe will be co-designed by a working group consisting of members of the study team, PRPs and rheumatology researchers.

We plan to conduct a mixed-methods study, involving a survey followed by semi-structured interviews

• In Phase 1, an online questionnaire will be sent to RMD researchers and PRPs. Exploring perceptions and expectations of PRP work in rheumatology research.
• In Phase 2, we will conduct semi-structured interviews with a selection of the participants who have consented to further contact to explore themes identified from the questionnaire.

Latest study progress

The data from the iPREPARE questionnaire and interviews produced many insights into the perceptions of the work of Patient Research Partners. We have prepared a video summarising our main findings and our three recommendations.

You can watch the video here:

Summary report to funders

During a recent visit to the Epidemiology Group premises at Foresterhill Campus, we were delighted to present our latest research findings to one of our key funding partners, Versus Arthritis . As part of these presentations, Dr Rebecca Parr presented a poster on the importance of giving feedback to Patient Research Partners to ensure a shared understanding of the value of their work.

You can view and download the poster summary below:

• Stevens, Hollick, Macfarlane, Parr, Provan and de Wit, on behalf of the iPREPARE Working Group. Feedback to Patient Research Partners is vital to ensure a shared understanding of the value of their work
  
  

Chronic Pain Club podcast

Martin Stevens discussed the iPREPARE co-design journey on Joel Nelson's Chronic Pain Club podcast, available here:

• Patient and Public Involvement in Research and the QUICK and iPREPARE Studies - YouTube

European Alliance of Associations for Rheumatology, People with Arthritis/Rheumatism in Europe (EULAR PARE)

Martin Stevens will present iPREPARE to the European Alliance of Associations for Rheumatology, People with Arthritis/Rheumatism in Europe (EULAR PARE) conference at the end of November 2024. iPREPARE will feature strongly at the conference with a poster, oral presentation and a workshop.

Chief investigator(s)

• Dr Martin Stevens
• Dr Rosemary Hollick

Co-investigators

• Dr Rebecca Parr
• Professor Gary Macfarlane
• Dr Sella Provan (Diakonhjemmet Hospital, Norway)
• Dr Maarten de Wit (EULAR Study Group for Collaborative Research / Sitching Tools, Netherlands)

If you have any queries about iPRePaRe, you can contact the study team via email at:

iprepare@abdn.ac.uk