EULAR Recommendations for the inclusion of patient representatives in scientific projects
EULAR has recognized the pivotal role of patients in the development of recommendations for the management or diagnosis of rheumatic and musculoskeletal diseases. Patient representatives should engage with researchers to help improving methodology and research outcomes, to give credibility to the results and to acknowledge the fact that for normative reasons patients should have a say in health care and health research when it is expected that decisions in these areas will have an impact on their daily life. To provide guidance to task force leaders and patient research partners EULAR has developed a set of recommendations for the inclusion of patient representatives published in the 'Annals of the Rheumatic Diseases'. Today, it is common practice for EULARs task force leaders to involve one or two patient research partners in their projects.
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 29 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 partner is available for a specific project or task.
Guiding brochure & reference cards explained
Following a review of initial experience with the concept, the EULAR task force in charge of training the patient research partners and setting up the network has developed guiding documents (reference cards and an explanatory brochure that comes with it) that are available for project leaders, patient research partners and other interested parties. These materials have been realised with the support and input of a stakeholder group active in the field of rheumatology research.
For further information please contact:
Alzbeta Goehmann (email here)
ARD lay summaries
The Annals of the Rheumatic Diseases (ARD) now also provides short research summaries for patients and non-clinicians to accompany selected key research papers published in the journal. These aim to clearly explain the results of the research studies as well as any implications for treatment of the specific condition. The summaries are written in plain language in a consistently structured format and checked for accuracy and readability by expert rheumatologists and people from EULAR’s patient research partner network.
Translations of Reference cards and Brochure into national languages
We are very pleased that the national organisations also developed material to support their research partners:
German Rheuma League: