European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects

Ann Rheum Dis. 2011 May;70(5):722-6. doi: 10.1136/ard.2010.135129. Epub 2011 Jan 20.


Objective: To develop recommendations to enable successful inclusion of the patient perspective in European League Against Rheumatism (EULAR)-funded scientific research projects.

Methods: The EULAR standardised operational procedures for guideline development were followed. A systematic literature review was presented during a first task force meeting, including 3 rheumatologists, 1 rheumatologist/epidemiologist, 2 allied health professionals, 2 representatives of arthritis research organisations and 7 patient representatives, resulting in 38 statements. A Delphi method was carried out to reduce and refine the statements and agree on a set of eight. Next, a survey among a wider group of experts, professionals and patient representatives (n=42), was completed. Feedback from this wider group was discussed at the second meeting and integrated in the final wording of the recommendations. Subsequently, the level of agreement of the group of experts (n=81) was re-evaluated.

Results: The project resulted in a definition of patient research partner and agreement on a set of eight recommendations for their involvement in research projects. These recommendations provide practical guidance for organising patient participation, capturing (1) the role of patient research partners, (2) phase of involvement, (3) the recommended number, (4) recruitment, (5) selection, (6) support, (7) training and (8) acknowledgement.

Conclusion: Collaboration between patients and professionals in research is relatively new. Trials or effectiveness studies are not yet available. Nevertheless, it is possible to define recommendations for the inclusion of patients in research following a solid expert opinion based consensus process.

Publication types

  • Consensus Development Conference
  • Research Support, Non-U.S. Gov't
  • Systematic Review

MeSH terms

  • Biomedical Research / organization & administration*
  • Europe
  • Evidence-Based Medicine / methods
  • Humans
  • Patient Advocacy* / education
  • Patient Selection
  • Practice Guidelines as Topic
  • Professional-Patient Relations