OP0069 INCLUSION OF PATIENT RESEARCH PARTNERS IN REMEDY – A RESEARCH CENTER FOR TREATMENT OF RHEUMATIC AND MUSCULOSKELETAL DISEASES

Abstract

BackgroundActive collaboration between patients and researchers in development and implementation of scientific projects is important to ensure a good match between patient’s preferences and the scientific focus in research, contribute to more patient-oriented health research agendas, enhance patient friendly design of research projects, and creating support for implementation (1). Such involvement is strongly advocated by EULAR and is often a prerequisite to receive funding for clinical research projects. At Diakonhjemmet Hospital in Norway, the division of rheumatology and research has for many years worked to involve patient research partners (PRPs) in research. A patient advisory board was established in 2007, led by a person (20% position) who herself has a rheumatic disease. In eight years from 2022, the division will receive funding from the Norwegian Research Council to establish and host a clinical research center for treatment of Rheumatic and Musculoskeletal diseases – the REMEDY center.ObjectivesTo describe how involvement of PRPs are organised within the REMEDY center.MethodsAn organisation map was developed as part of the application for funding. The leader of the patient advisory board, together with three senior researchers, were involved in several rounds of discussions on how PRP involvement should be organised in the center, and also in meetings with the larger research group.ResultsThe organisation of REMEDY is shown in Figure 1.Figure 1.Organisation of REMEDY.1.All partners, including The Norwegian Rheumatism Association, (the largest patient organisastion in the field), are represented at the Center Board. This ensures patient involvement at the strategic level, including setting research agendas and priorities.2.The center is led by a centre director and two co-directors, of which one has a specific responsibility of PRP-involvement3.The Centre Executive Committee (CEC) consist of the Center Director and co-directors, the WP leaders, the leader of the patient advisory board, the key senior scientific staff members of the partner institutions involved in the center and senior staff members deemed appropriate by the Centre Director.4.The patient advisory board, consisting of 10-15 PRPs, is central within the center. Members of the board will be involved in all research projects, collaborating with researchers to improve design, methodology, research outcomes and implementation. The board provides a platform for the members for education, development, and exchange of knowledge and experience.5.There are seven work packages (WPs) in REMEDY, each approaching the knowledge needs within rheumatic and musculoskeletal diseases (RMDs) treatment from different angles, and with international collaborators. WP7 (Empowering the individual) will provide a platform for the Patient advisory board, facilitating input from PRPs to all WPs. The chair of the EULAR study group for collaborative research is an international collaborator in WP7.The leader of the Patient Advisory board has a 50% position. Additionally, there is funding for board activities, and for PRP involvement in initial project phases, whereas PRP activities are included in applications for external funding.ConclusionThe REMEDY center is organised to ensure involvement of PRPs at all organisational levels, from individual research trials to the strategic and operational management of the center.