Duration: 01 July 2023 – 30 June 2024
Funder: European Alliance of Associations for Rheumatology (EULAR)
Principal investigators: Dr Martin Stevens, Dr Rosemary Hollick
Patients should be involved at all stages of research and development of health services as they have expert knowledge of their conditions. Patient research partners (PRP) involvement with research is an important and expanding consideration for investigators, healthcare practitioners, patients, and research funders alike. The iPRePaRe study will explore the way in which the work of patient research partners (PRPs) in rheumatic and musculoskeletal disease (RMD) research is perceived by the partners themselves and by RMD researchers. To do this we will work with patient partners to co-design a questionnaire that will be sent to PRPs and RMD researchers. The questionnaire will be followed up by interviews with PRPs and RMD researchers.
- What is the background to this study?
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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.
- What are the main aims of this study?
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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.
- What will this research involve?
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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.
- Study team
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Chief investigator(s)
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)
- Contact us
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If you have any queries about iPRePaRe, you can contact the study team via email at: