Patient and public involvement at the German Center for Mental Health: achievements and challenges

Abstract

Patient and public involvement (PPI) describes the participation of patients and relatives, i.e., experts by experience (EE), in the research process. The PPI has not been widely adopted in the fields of medicine and clinical psychology in Germany and there is anotable absence of institutional support. The German Center for Mental Health (DZPG), which has been under construction since May 2023, aims to achieve nationwide and cross-center implementation of PPI, constituting one of its primary objectives. Participation of EE is to be implemented in the DZPG at all levels of decision-making. The article describes the origins, development and challenges associated with the implementation of participation structures and projects in the DZPG. The central political PPI committee in the DZPG, the Trilogue Center Council (TZR), developed acomprehensive PPI strategy for the DZPG in almost 3 years of work, before the beginning of the financial support of the DZPG. Among various measures, the strategy entails establishing afar-reaching representation for EE in all decision-making bodies of the DZPG, to involve EE as reviewers in evaluating research proposals, to integrate participatory elements into all studies of the DZGG and to foster user-initiated research endeavors. The implementation of the strategy is ensured by across-center PPI infrastructure, the Center for PPI, and scientific PPI consultants. The Center for PPI's tasks include supporting the voice of the EE and developing instruments and guidelines for participatory research, bringing together EE and researchers for joint DZPG projects as well as the documentation and quality assurance for participatory research. One of the particular challenges for the successful implementation of the PPI strategy is the limited experience with PPI in Germany in the field of mental health research and the widespread lack of structural implementation. Currently developed solution strategies include training for researchers and EE to communicate the benefits and pathways in the realization of PPI and thus enable shared decision-making and research. In addition, extensive access to knowledge and resources for EE will be created and uniform remuneration regulations for EE will be developed. APPI strategy at the DZPG has been successfully developed and is currently being implemented by the cross-center infrastructure Center for PPI.