Involving patients as research partners exemplified by the development and evaluation of a communication-skills training programme (KOKOS-Rheuma)

Abstract

Despite widespread recommendations for involving patient research partners (PRPs), there is little information about how patients have been involved in research. Our aim was to describe and assess the contributions of four PRPs in a project on communication-skills training funded by Deutsche Rheuma-Liga Bundesverband e. V. (German League Against Rheumatism [GLR] is a patient organisation for people with rheumatic and musculoskeletal diseases). The PRPs’ participation was beneficial with regards to content and organisation. Thanks to their participation, we could enlarge our sample by over a third, and they contributed their own ideas to the training. Four PRPs added their perspective of various regional organisations. Outside this project, they were also very active within GLR and experienced in managing their rheumatic disease. To achieve more representativeness, future studies might also employ strategies to engage individuals with less experience in dealing with their disease, e.g. newly diagnosed patients. While the collaboration between PRPs and researchers proved very successful, more regular discussions about tasks and responsibilities would be worthwhile.