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

[Participatory research in the German Rheumatism League. Content implementation and practical realisation of participatory research in a patient organisation]. Z Evid Fortbild Qual Gesundhwes. 2020 Jul 16;: Authors: Clausen J Abstract 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 either by the Deutsche Rheuma-Liga or by 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 inte...
Source: Zeitschrift fur Evidenz, Fortbildung und Qualitat im Gesundheitswesen - Category: Health Management Tags: Z Evid Fortbild Qual Gesundhwes Source Type: research

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