Patient and Public Involvement in General Practice Research: Concepts of patient and public involvement applied in the Networks of the Initiative of German Practice-Based Research Networks - DESAM-ForNet

Susanne Kersten, Doreen Kuschick, Christian Kretzschmann, Andreas Polanc, Jennifer Engler, Christine Kersting

Keywords: PPI, Patient Public Involvement, General Practice, Research Networks, Implementation, concept

Background:

Patient and Public Involvement (PPI) is increasingly implemented in general practice research in Germany. In 2020, six networks involving 23 Institutes of General Practice and a joint coordination office were established as the "Initiative of German Practice-Based Research Networks - DESAM-ForNet". A central challenge for PPI in this setting is the representation of the diverse patient populations. Even though the international literature provides recommendations on how to design PPI, adoption to this specific context is needed. Therefore, a setting-related exchange of approaches and experiences is necessary.

Research questions:

Exchange of experiences with the scientific community and description of how PPI is implemented in the general practice-based research networks (GPBRN) of the DESAM-ForNet initiative.

Method:

This contribution arose from the Working Group on Participation of the DESAM-ForNet initiative and focuses on the description of PPI formats that have been established within the six GPBRNs. The PPI formats shall be used long-term and across projects.

Results:

In the GPBRNs PPI takes place regularly within "public forums" (BayFoNet), "round tables" (FoPraNet-BW) or "patient advisory boards" (HAFO.NRW, RESPoNsE, SaxoForN) and focuses especially on the conception and dissemination of research. In some cases, patients are also involved together with other stakeholder groups in a "network advisory board" (FoPraNet-BW) or in a "local advisory board” (HAFO.NRW). The most successful recruitment channels so far have been personal approaches by GPs, local self-help groups, simulation patient programmes and public posters. The evaluation of the PPI formats is mostly still in the planning stage.

Conclusions:

The implementation of PPI is not a standard procedure, but must rather be adopted to the GP context.

Points for discussion:

The network-specific PPI concepts show various possibilities for long-term, collaborative PPI.

Which PPI concepts in GPBRNs do you know?

What works particularly well for you? What does not work at all?