# The role of representation in participatory settings of health research in Germany: protocol for a scoping review

## TL;DR

This review explores how representation is understood and used in participatory health research in Germany to improve inclusive and democratic research practices.

## Contribution

The study provides a systematic mapping of how representation is conceptualized in German participatory health research.

## Key findings

- The review will identify how representation is operationalized in participatory health research in Germany.
- It will map the conceptual foundations of representation in study design and practice.
- Findings will support future methodological and normative debates on participation in health research.

## Abstract

Participatory health research (PHR) has gained growing importance as an approach to include the perspectives of patients and communities in health research. While it is widely assumed that PHR contributes to more democratic and needs-based research, the conceptual foundations of how participation and representation are understood often remain vague – particularly in the German research context. This scoping review explores how representation is conceptualized and operationalized in participatory health-related research in Germany.

The review follows the JBI methodology for scoping reviews and is reported in accordance with the PRISMA-ScR guidelines. A systematic search will be conducted across four databases (PubMed, CINAHL, PsycINFO, Scopus), supplemented by manual searches in the German PartNet archive and reference tracking. Eligible studies must report on empirical, participatory health research conducted in collaboration with a German research institution. Documents will be screened and analyzed using qualitative content analysis in MAXQDA, following both deductive and inductive coding strategies. Representation will be analyzed along two conceptual lines: representation as a responsive relationship and externally ascribed representation.

The review will map existing understandings and practices of representation in German PHR. Findings will support future methodological and normative debates around participation in health research and provide a foundation for international comparison.

The online version contains supplementary material available at 10.1186/s40900-025-00736-w.

In health research, it is often not possible for all people affected by a topic to be directly involved in the research process. Instead, certain individuals speak or act on behalf of others – this is called ‘representation.’ This review will examine how researchers in Germany understand and apply the concept of representation in participatory health research. It will explore which individuals or groups are involved, how they are selected, and how their roles are described. By analyzing published studies, the review aims to provide an overview of current practices and identify areas for further development. The findings may support the future design of participatory research that does more justice to the perspectives of those affected.

The online version contains supplementary material available at 10.1186/s40900-025-00736-w.

This protocol outlines a scoping review that examines how representation is conceptualized and operationalized in participatory health research in Germany, mapping how different understandings of representation are reflected in study design and practice.

The online version contains supplementary material available at 10.1186/s40900-025-00736-w.