AB1349 PATIENT INVOLVEMENT IN BASIC RHEUMATOLOGY RESEARCH IS CHALLENGING BUT FEASIBLE. A 3 YEAR’S RESPONSIVE EVALUATION OF ADDED VALUE, PITFALLS AND CONDITIONS FOR SUCCESS

Abstract

Background: Empirical evidence for effective patient-researcher collaboration in basic research is lacking. Objectives: To explore the feasibility and impact of patient involvement in basic rheumatology research and to identify facilitators and barriers. Methods: Responsive evaluation of three years’ participatory research in which two formats were piloted: (1) patient participation in monthly team research meetings (first phase) and (2) patient-researcher partnerships in single research projects (second phase and follow-up). Data collection comprised surveys, interviews, training days, research team meeting reports and field notes. Regular reflective team meetings took place with active participant involvement. A qualitative analysis using thematic coding focused on impact, barriers and facilitators. Results: In total 13 patient representatives (PRs) and 15 basic researchers participated. PRs experienced basic research as complex due to lack of understanding bio-molecular processes and the use of technical jargon. Their initial role was mostly listening, sometimes asking questions and sharing personal experiences. Informal communication was perceived as most beneficial. After three months the atmosphere relaxed and equal relationships emerged. Researchers’ motivation increased by talking with PRs, resulting in better understanding of disease burden on daily life and the societal impact of their research. They started to speak in lay language, which enabled PRs to appreciate the value of scientific rigour and why progress takes so much time. PRs obtained insight in the biological processes of their own disease. It inspired PRs to stay involved over a longer period. After 2 years, group-based consensus arose about the effectiveness of 1:1 patient-researcher contacts over patient participation in research team meetings. During follow-up, the number of partnerships increased from 2 to 11. Facilitators of patient involvement related to a) education of principles of participatory research; b) training of patient-researcher collaboration; c) development of a common language level; d) open mind and respectful communication; e) professional support; and f) leadership commitment. Main barriers were the complexity of pathogenetic processes for patients and time commitment for researchers. All participants found the collaboration worthwhile. Reported impact was divers. Having to look at their work from a helicopter view encouraged researchers to attain a holistic view of people with a rheumatic condition and skills to explain their research for a lay audience. Patients experienced personal satisfaction after sharing experiences and receiving recognition from others. For the research process, a few examples were reported where patients input led to new topics on the research agenda. One example was the grant application to explore determinants of fatigue in the laboratory, directly prompted by patients. More substantial benefits were experienced for the development of patient friendly educational materials and lay summaries of research protocols, dissemination of research findings through interviews and presentations, and even promotion of patient participation in national scientific societies of which the researchers are a member. Little impact was reported on the actual results of basic research. Conclusion: Long term patient involvement in basic research is feasible and worthwhile. Despite the time investment, both patients and researchers experience valuable benefits that outweigh the lack of tangible impact on research findings. Disclosure of Interests: None declared