Involving Patients as Research Partners

Participation of patient research partners is strongly recommended for clinical research projects and should be considered for all other research projects to provide experiential knowledge, with the aim of improving the relevance, quality and validity of the research process and of the potential short and long future (co-)related clinical outcomes. For more information, please read the material here.


FOREUM considers it important to integrate patients and patient organisations as full partners and at all stages in the project design and development.

If you would like to receive more information on how to do this, please contact EULAR

  • Reference cards: Inclusion of patient representatives in scientific projects
  • Booklet: Inclusion of patient representatives in scientific projects

Thank you for sharing among your research team members.


Network of patient research partners 

A related initiative that EULAR has supported in the recent past is the establishment of a PARE network of trained patient research partners. This network of currently 59 competent patient representatives can be contacted whenever a need for reviewers of scientific research projects or active participation of trained patient research partners is required. Requests should initially be addressed to the EULAR secretariat ( which then ensures that the most adequate patient research partners are available for a specific project or task.