Abstract
<jats:p>"Background Patient Research Partners (PRPs) are actively encouraged in Rheumatology research, but the depth and breadth of collaboration remain unclear. We explored the perception that PRPs and researchers from across Europe had of PRP involvement, to identify barriers to good practice, and opportunities for improvement. Methods A working group of 6 rheumatology researchers and 6 PRPs co-designed the 2-stage mixed-method study, from design to analysis. 1. Questionnaires investigating the perception of PRP work. Topics included types of PRP involvement, training, payment for work, and the impact of PRP work. 2. Semi-structured interviews to explore barriers and potential solutions for meaningful collaboration. Results Questionnaires were completed by 84 PRPs and 69 researchers, followed by interviews with 8 PRPs and 7 researchers from 15 European countries. • 59% of PRPs were involved in early-stage study design, 35% in qualitative analysis, and 17% in quantitative analysis. • 63% of researchers had no relevant training prior to working with PRPs, whilst 38% of PRPs receiving no training. • PRP work was paid 60% of the time. Interviewees agreed that PRP input should be considered work. • Researchers felt PRP work impacted decisions. However, PRPs rarely understood their impact due to lack of personalised feedback. Conclusions Study recommendations for improved practice throughout the research cycle: • Co-develop a framework of responsibilities and expectations at study outset. • Provide relevant training for both PRPs and researchers. • Recognise PRP work as providing expertise. • Provide personalised feedback to demonstrate PRP impact."</jats:p>