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Background: Although the European Alliance of Associations for Rheumatology (EULAR) recommends collaboration with patient research partners (PRPs) in rheumatology research, it remains unclear to what extent the values and principles of working with PRPs are effectively implemented in practice, and what barriers may hinder successful collaboration.
Objectives: The iPREPARE study aimed to explore the perceptions of PRP involvement in rheumatology research, from the perspectives of both PRPs and researchers, in order to identify barriers to successful collaborative research and potential solutions to better support PRP involvement in the future.
Methods: iPREPARE was co-designed by a working group of six researchers and six PRPs who were involved throughout the research cycle from study design to analysis. iPREPARE was a mixed-methods study comprising:
A questionnaire to capture how PRP work in rheumatology is perceived by European PRPs and researchers. The questions covered a range of topics such as: type of involvement, perceived equality in the research project, training, perceived impact and acknowledgment/recognition of PRPS.
Semi-structured interviews with PRPs and researchers with the aim of identifying barriers and potential solutions for a meaningful collaboration.
Questionnaires and interviews were conducted in English. Questionnaire data was analysed descriptively, and interview data was analysed thematically.
Results: We received questionnaire responses from 84 PRPs and 69 researchers, and conducted interviews with 8 PRPs and 7 researchers from across 15 different European countries. We found that 35% of PRPs reported being involved in qualitative analysis, whilst 17% reported being involved in quantitative analysis. Interview data suggested that PRPs may be able to contribute to data analysis more by interpreting draft result sets. When we evaluated perceived equality in collaborations, two main topics were identified. Firstly, PRPs in our study were mostly involved early in the research cycle with 59% of PRPs being involved in early-stage study design. However, interview data suggested that that PRPs can also receive requests for input at very short notice and therefore cannot meaningfully contribute to a research project. This can lead to tokenism if the names of PRPs are added to studies without meaningful contribution. We also found that 38% of PRPS had not received specialised training to perform their roles whilst 63% of researchers had not received training in working with PRPs. Interview data suggested that training for researchers in working with PRPs and research training for PRPs would improve the collaboration. PRP respondents reported being unaware of their impact on research. For example, only 51% of PRPs felt they had a positive impact on decisions, which contrasts with 92% of researchers who felt that PRPs had a positive impact on decisions. Interview data suggested that PRPs were not being given detailed, personalised feedback that would allow them to understand their impact. In terms of acknowledgement, 34% of PRPs reported not being paid for PRP work, whilst 40% of researchers confirmed they did not pay for PRPs for their contributions. Interview data suggested a wide range of views about payments for PRPs which varied by country. However, payment for PRPs was considered to be appropriate where the contribution was perceived to be comparable to paid ‘work.’From the research data the iPREPARE working group was able to agree three recommendations for improving the work of PRPs in rheumatology studies.
Conclusion: This study has revealed significant variation in the involvement of PRPs throughout the research cycle, differences in perceptions of impact, and key gaps. To address this, we recommend that a framework is developed to describe mutual expectations and obligations between PRPs and researchers from the start. In addition, more training should be made available for PRPs and researchers. Finally, we recommend that PRP work should be recognised as a provision of expertise in order to emphasise the parallels with paid work. The findings also support the 2023 updated EULAR recommendations for the involvement of patient research partners in rheumatology research and represents a baseline from which to evaluate efforts to implement the recommendations in practice.
REFERENCES: NIL.
Acknowledgements: NIL.
Disclosure of Interests: Martin J. Stevens: None declared. Maarten de Wit received an honorarium for a lecture for UCB summits in 2021, 2022 and 2023, Peter Böhm: None declared. Loreto Carmona LC’s company has worked as a contracted consultant for laboratories among other institutions, such as BIOHOPE SCIENTIFIC SOLUTIONS FOR HUMAN HEALTH S.L, BMS, Fresenius Kabi, Galápagos, GSK, Lilly, Novo Nordisk Pharma SA, Nordic Pharma, NOVARTIS, Pfizer, Sandoz, SANOFI, Muriel Elhai Boehringer Ingelheim, Pfizer, Novartis Foundation for Bio-Medical Research, Ricardo J. O. Ferreira: None declared. Ingrid de Groot: None declared. Ingvild Kjeken: None declared. Souzi Makri: None declared. Rebecca Parr: None declared. Eva Petersson: None declared. Sella Aarrestad Provan: None declared. Jon Skandsen: None declared. Tracey Snell: None declared. Gary J. Macfarlane: None declared. Rosemary Hollick received speaker fees from CSL Vifor.
© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (