OP0298-PARE EXPERIENCES AND IMPACT OF PATIENT AND PUBLIC INVOLVEMENT IN SWEDISH RHEUMATOLOGY RESEARCH: A SURVEY OF RESEARCHERS AND PATIENT RESEARCH PARTNERS

Abstract

BackgroundPatient and public involvement (PPI) in research is based on the principle that research should be conducted “with” or “by” members of the public, rather than “to”, “for”, or “about” them.(1) Successful PPI is dependent on active partnerships between researchers and people living with rheumatic diseases throughout the research process. Such partnerships have been shown to improve the quality and relevance of the research. However, as funding bodies increase their demands for PPI, so too may the risk for tokenistic “involvement”.Since 2008, the Swedish Rheumatism Association (SRA) has trained people living with rheumatic diseases to become patient research partners (PRPs) and encouraged their involvement in research projects. The network has grown substantially in terms of the number of registered PRPs, the number of research projects aiming to include PRPs, as well as the number of active partnerships between researchers and PRPs. However, the quality of partnerships and the impact of PPI on Swedish rheumatology research is unknown.ObjectivesTo examine the extent of PPI in Swedish rheumatology research, the nature of partnerships between researchers and PRPs, and the perceived impact of PRPs on the research processes.MethodsThe target population was researchers and PRPs linked to the SRA in 2021, the largest private funder of Swedish rheumatology research. In practice, this included researchers who had applied for research grants from the SRA, researchers that had sought PRPs through the SRA, PRPs trained and registered with the SRA, as well as external PRPs named in grant applications submitted to the SRA.An online questionnaire was developed to examine the target population’s understanding of the concept of PPI, their current involvement and experience of PPI, the nature of the partnerships between PRPs and researchers, and their future needs.(2,3) The survey was shared via email to the target population and remained open for one month.PRPs were involved in the development and testing of the survey and will be involved in the interpretation and implementation of results.ResultsA total of 126 researchers that had submitted research grant applications to the SRA were identified. A further 5 researchers who had previously registered interest in collaborating with PRPs were identified from our records. Review of our internal register of trained PRPs identified 36 PRPs, whilst a further 9 external PRPs were identified from grant applications. However, contact details were unavailable for 7 of the external PRPs. As such, the survey was circulated to 131 researchers and 38 PRPs.Preliminary response rates, one week into the survey period, were 31.3% for the researchers (41 responses) and 39.5% for the PRPs (15 responses).ConclusionAs funding bodies increase their demands for PPI in grant applications, evaluations of the nature of PPI are required to ensure that funders’ efforts do not mistakenly result in tokenistic efforts to include patients and the public in research. A better understanding of the nature of PPI, the impact of PPI on research, and the needs of the researchers and PRPs will allow appropriate support and training to be developed. This will allow growth not only in the number of partnerships, but also in the quality of partnerships between researchers and PRPs. This, in turn, is likely to improve the quality of rheumatology research.