New guidelines for patient involvement in rheumatology research issued

Patients and researchers could work better together thanks to new evidence-based recommendations.

Two elderly patients sitting at a table with a researcher, looking at his laptop

To ensure rheumatology research meets the needs of patients and to reflect the evolving role of patient involvement, an international task force including Birmingham researchers published an updated set of recommendations to guide researchers and public research partners in enhancing effective partnerships in research.

The task force, which also comprised 10 patient research partners, reviewed and expanded the previous 2011 European Alliance of Associations for Rheumatology (EULAR) guidelines, which were the first set of recommendations for the involvement of patient representatives in rheumatology scientific projects.

Incorporating years of new knowledge and evidence about the challenges and facilitators of patient involvement, they developed five new overarching principles, updated seven existing recommendations and formulated three new recommendations. The overarching principles address the definition of a patient research partner (PRP), the contribution of PRPs, the role of informal caregivers, the added value of PRPs and the importance of trust and communication in collaborative research efforts. 

The recommendations

  1. PRPs should be involved in all types of research, including basic, translational, and clinical
  2. Researchers should involve PRPs at the start of a research project and throughout all stages
  3. At least two PRPs should be involved in each project
  4. PRP recruitment should be based on a clear and agreed description of roles and responsibilities and should aim for diversity and inclusivity
  5. The research team must provide a supportive environment and facilitate the contribution of PRPs
  6. There should be a designated coordinator to support collaboration between researchers and PRPs
  7. Researchers should have access to training and support, to achieve effective communication and collaboration with PRPs as equal partners
  8. PRP should have access to training relevant to their roles
  9. Researchers and PRPs should regularly evaluate their collaboration and adjust their way of working when needed
  10. The contribution of PRPs must be appropriately recognised

Dr Marie Falahee, co-author of the recommendations, Lecturer in Behavioural Rheumatology at the University of Birmingham’s Institute of Inflammation and Ageing and researcher within the Inflammatory Arthritis theme at the National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre, said:

“As researchers, we recognise that patient involvement is not just a box-ticking exercise—it’s a fundamental shift in how we approach rheumatology research. These updated guidelines empower us to collaborate more effectively with patient research partners, ensuring that their insights and experiences shape our work. By involving patients from the outset, we enhance the relevance, quality, and impact of our research, ultimately benefitting those living with rheumatic conditions.”

Co-author Dr Steven Blackburn, Associate Professor in the University of Birmingham's Institute of Applied Health Research and Academic Lead for Patient and Public Involvement and Engagement at the NIHR Birmingham Biomedical Research Centre, added:

"These new recommendations convey a step-change in enabling and supporting meaningful partnerships between researchers and patients in all types of rheumatology studies. They will enable research teams to have a better understanding of what is expected of them when involving people with lived experience as patient research partners. Though developed in the context of rheumatology research, the EULAR recommendations are relevant for all health and care research."