Overarching principles and recommendations
| Overarching principles | GoR | LoA |
| A. Patient research partners (PRP) provide input to research, through active collaboration as equal partners with researchers. | n.a. | 9.96±0.2 |
| B. PRPs are persons with an RMD who provide input to research, based on their experiential knowledge and expertise. | n.a. | 9.92±0.4 |
| C. Informal caregivers can provide input to research, complementary to the patients’ lived experience. | n.a. | 9.36±1.1 |
| D. PRPs add value and relevance to all types of research; their involvement benefits patients, researchers and PRPs. | n.a. | 9.68±0.6 |
| E. Open, transparent communication, trust, respect and willingness to learn from each other are key factors for equal and successful collaboration between PRPs and researchers. | n.a. | 9.96±0.2 |
| Recommendations | GoR | LoA |
| 1. PRPs should be involved in all types of research, including basic, translational and clinical research. | C | 9.16±1.3 |
| 2. Researchers should involve PRPs from the inception of a research project and throughout all its stages. | B | 9.68±0.6 |
| 3. A minimum of two PRPs should be involved in each project. | D | 9.56±0.7 |
| 4. Recruitment of PRPs should be based on a clear and agreed-upon description of mutual roles and responsibilities and should aim for diversity and inclusivity. | C | 9.96±0.2 |
| 5. The research team must provide a supportive environment and facilitate the contribution of PRPs to research. | D | 9.88±0.3 |
| 6. A designated coordinator should support the collaboration of researchers and PRPs. | B | 9.36±0.9 |
| 7. Researchers should have access to training and support, to achieve effective communication and collaboration with PRPs as equal partners. | D | 9.68±0.7 |
| 8. PRPs should have access to training relevant to their roles. | A | 9.72±0.5 |
| 9. Researchers and PRPs should regularly evaluate their collaboration and adjust their way of working when needed. | D | 9.76±0.5 |
| 10. The contribution of PRPs must be appropriately recognised, including co-authorship when eligible; financial compensation should be considered. | D | 9.44±0.9 |
GoR, grade of recommendation; LoA, level of agreement; n.a., not available; RMD, Rheumatic and Musculoskeletal Diseases.