Teilnahme von Patientinnen und Patienten in der Forschung: Was bringt es für das Projekt? Auswirkungen des Patientinnenbeirats in der Studie REGATTA.

Background Active patient participation in research is becoming increasingly important and contributes to patient-relevant research. In order to gain first experiences with patient participation, a patient advisory board was established in the double-blind trial REGATTA which deals with treatment of uncomplicated urinary tract infections. The aim of this paper is to present the direct and indirect effects of the advisory board on the research project and beyond. Methods Establishing the advisory board, wishes and expectations of participants were recorded, main topics were agreed upon, and spontaneously arising topics were taken up. Based on audio recordings, minutes were taken and consensus reached. For the present work, the protocols were evaluated descriptively by content analysis. The discussions on the given topics were assigned to categories, spontaneously introduced topics were classified or new categories were mapped. The significance for the project or research in general was reflected and consented in team meetings. Results A total of six advisory board meetings took place. Among the direct results effective in the project were, for example, the optimization of documents and the joint development of strategies for the dissemination of results. In addition, there were important indirect findings: the importance of early involvement of patients already in the planning phase, the diversity of individual therapy preferences and their consideration in the interpretation of results, the benefit for the researchers' own professional development through a more comprehensive understanding of the condition have effects beyond the actual project. Conclusions Participation of patients in research causes direct positive effects not only in the actual project, but also beyond through a broader understanding of the researchers for the condition itself, and perspectives of affected patients. [ABSTRACT FROM AUTHOR]