Running the Numbers

Abstract

### Background Patient research partners (PRPs) are increasingly included in research as well as guideline development task forces in rheumatology. In observational and registry studies the role and involvement of PRPs is not clear. ### Objectives We aimed to evaluate current PRP involvement in registry research as well as benefits and barriers of implementation in practice. ### Methods Based on a round table discussion during the EULAR Registries and observational drug studies meeting (RODS) in 2019 we used mixed methods methodology (survey and focus groups) to study the role of PRPs and involvement in research. The survey was sent to investigators of registries across Europe, participants of RODS meetings and members of the EULAR PARE (People with Arthritis / Rheumatism across Europe) network. Interested survey participants were further invited to one of three focus groups. The conduction of the focus groups (FG) was guided by a semi-structured guide based on the survey results. An inductive thematic analysis approach was applied to qualitative data. ### Results We received 45 survey responses with around half of them from patients. The mean importance of PRP involvement was scored VAS±SD: 75±24mm (on a 100mm VAS), but the actual involvement was rather low (VAS: 32±20mm) and 12 participants had no experience with PRPs. The most common current practice was patient involvement in design of studies (32%), cooperation with patient organisation for recruitment (32%) and involvement of PRPs in the management board (32%). The most important need of PRP integration was attributed in the stages of design and preparation before recruitment. 11 survey participants even indicated that PRPs should be involved in all stages/tasks of research. During the focus groups 5 main themes (Table 1) could be identified. Complementary perspectives lead to greater synergy between researchers and patients and further the aim of deriving more valid outcomes. For successful involvement of PRPs, ideally PRPs should be heterogeneous in regard to their lived experience, education ought to be provided and researchers are responsible to offer an environment where PRPs feel comfortable. All FGs elaborated on different roles that PRPs can take on, although the researcher FGs outlined more different tasks of involvement than the PRP group. One theme summarised different barriers for PRP involvement, which have not been a topic of discussion in the FG composed of PRPs only. ### Conclusion There is room and much appreciation of PRP involvement in registry research. Researchers and PRPs could use the strategies proposed in this study to define PRP roles and plans of ongoing and future studies. ### Disclosure of Interests Paul Studenic: None declared, Mandeep Sekhon: None declared, Loreto Carmona: None declared, Maarten de Wit: None declared, Elena Nikiphorou Speakers bureau: Celltrion, Pfizer, Sanofi, Gilead, Galpagos, Abbvie, Eli Lilly, Grant/research support from: Pfizer, Eli Lilly