Participatory research in the German Rheumatism League. Content implementation and practical realisation of participatory research in a patient organisation

The German Rheumatism League ("Deutsche Rheuma-Liga") is the largest patient organisation in Germany, with about 300,000 members. In the sense of participatory research, the Deutsche Rheuma-Liga involves trained patient representatives in research projects funded by either the Deutsche Rheuma-Liga or other organisations. In order to invigorate the principle of participatory research in the field of rheumatology in Germany various measures have been undertaken: the principle of participatory research has been implemented as obligatory in the funding guidelines of the German Rheumatism League. A training course for German-speaking patients was created, and reference cards and an explanatory brochure were provided. In a letter campaign, about 70 universities and hospitals with rheumatology departments were contacted and informed about the benefits of participatory research. Since 2014, three training courses with 21 participants have been conducted. The trained patient representatives have participated in more than 30 projects up to the end of 2019. The overall experience of the patient representatives actively involved in research projects was mainly positive, and participatory research was perceived as being interesting and enriching. The implementation of participatory research in the German Rheumatism League can be described as successful. The article describes the measures taken to implement the principle of participatory research into the structures of the German Rheumatism League and summarises the experiences of patients and the patient organisation during five years of active participation in research projects.