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

A C Schöpf-Lazzarino,J Lamprecht,A Stoye,M Schlöffel,U Garske,W Mau,P Böhm,E Farin

doi:10.1007/s00393-020-00839-7

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.

Highlights

The call for proposals was made by one of the largest patient organisations in Germany; they requested that at least two patient research partners (PRPs) be involved in the project
The fact that the PRPs’ involvement was obligatory is an important step in strengthening participatory research
While the tasks of the patient research partners and the time schedule were discussed at the beginning of the project, and both sides were open to suggestions about improving the process, there was no continuous evaluation of the work process and cooperation

Summary

Methodology

The first step was to systematise the PRPs’ tasks according to the Shippee et al [22] framework’s phases in order to provide a complete and systematic overview of their participation. An approach to participation as described by Sweeney and Morgan [23] was assigned to each stage according to the PRPs’ tasks

Findings

Discussion

Compliance with ethical guidelines