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OP0163-PARE Invigorating the principle of participatory research in germany - setup of a training course for patient representatives
  1. J Clausen
  1. Deutsche Rheuma-Liga Bundesverband, Bonn, Germany

Abstract

Background Patient participation in research projects is important because it enhances the legitimacy of research projects and facilitates the implementation of research results after completion of the respective projects. Since 2009, patient representatives have been actively involved in EULAR projects, and the first EULAR training course for patient representatives was conducted in 2010.

Objectives The aim of the project was to create a training course for German-speaking patient representatives and thereby to invigorate the principle of participatory research in Germany. The training course is supposed to enable patients to make valuable contributions in research projects. In addition the training course aimed at lowering barriers and strengthening the patients' self-confidence, in order to facilitate their integration in the unfamiliar environment among researchers.

Methods Participants were trained during a two-day interactive training course. For evaluation of the course, each participant anonymously answered 14 questions in a questionnaire.

Results The training course consists of seven modules. In the first module (I), the history of the EULAR “patient research partners” is described and the tasks of the future German patient research partners are outlined. In the following modules, various types of research and study designs (II), the generation of research questions and hypotheses (III), various scientific tools (IV), the detailed sequence of steps in a typical research project (V), literature research in scientific databases (VI) and the process of reviewing grant applications (VII) are explained. Each module is subdivided in an explanatory section, an exercise section (where the participants have to apply the newly achieved skills) and a final discussion section.

So far, two courses have been conducted. The training course was rated either “very good” or “good” by 77% and 23% of the participants, respectively. Those patients, already actively involved in research projects, acclaim participatory research as interesting and enriching.

Conclusions The training course was perceived very well by the participants. In future follow-up meetings, the usefulness of the various modules and any missing items will be discussed and the training course adapted accordingly.

Acknowledgements We thank Dr. C. Sander for her contribution to the training course.

Disclosure of Interest None declared

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