Aktive Mitgestaltung der allgemeinmedizinischen Forschung durch Patient*innen: Evaluation des HAFO.NRW-Patient*innenbeirats

Abstract

Introduction

Patient involvement is essential for relevant, feasible, and transparent research. In recent years, generic patient advisory boards (PAB) have been increasingly established in Germany to involve patients across different projects in primary care research. One of those PABs is localized at Witten/Herdecke University as part of the North-Rhine Westphalian General Practice Research Network (NRW-GPRN). This manuscript evaluates the impact of involving the NRW-GPRN PAB into research projects, the patients’ experiences with involvement activities, and conditions required for the work of the PAB.

Methods

The concept for the NRW-GPRN PAB was developed on the basis of the literature and expert discussions. PAB members were, inter alia, approached via local notices and directly by general practitioners. Since 2021 the PAB meetings have taken place twice a year and are evaluated using a short, written questionnaire. In addition, there is an oral feedback round and debriefings by the scientific coordinators. The scientists contributing their projects subsequently report on the changes that have been made due to the PABs’ contributions. The findings from the written and oral evaluations are discussed together after analysis in order to draw implications for possible adjustments to PAB activities.

Results

The NRW-GPRN PAB comprises eleven persons; seven of them are female and most are 50 years or older. So far, six meetings have taken place with an average of six participants, where the contents of eight different projects have been discussed. During all sessions, patients were at least involved as advisors. The contributions of the PAB led to changes in all projects. Based on 38 written evaluations, the majority of the PAB members (n = 29) thoroughly enjoyed the meetings. The research topics, the diverse perspectives and the appreciative interaction were highlighted as particularly positive aspects.

Discussion

The involvement activities are experienced positively by both PAB members and scientists. By reflecting on the meetings together, it was possible to adapt the structure of the PAB meetings to accommodate the members’ needs. This joint process may also have had a positive effect on their respectful cooperation.

Conclusion

Involving a generic PAB across projects is feasible. In the future, the impact of involvement activities on research processes will have to be examined even more closely. Also, there is a need to develop strategies to promote more diversity among PAB members.