# Mapping key issues and useful theory to address remaining ethical, practical and political challenges in participatory research in health

## TL;DR

This paper explores challenges in participatory health research and suggests theoretical tools to improve how communities are involved in health studies.

## Contribution

The paper identifies key unresolved issues in participatory action research and introduces interdisciplinary theories to better understand and address them.

## Key findings

- Participatory action research requires shifting power dynamics in the research process.
- Combining participatory methods with biomedical research remains a challenge.
- Linking local research to broader policy changes is an area needing further development.

## Abstract

Participation is recognised as having a key role in health, for increasing the relevance and effectiveness of health interventions, for the health promoting benefits of community empowerment and as an ethical imperative. Participatory approaches to health research are also increasingly valued for bringing the insights of lived experience, and more relevant research and action. In this paper, we explore key remaining issues in participatory action research highlighted by scholars, practitioners and published literature, and highlight some useful conceptual resources which help to better understand them. We distinguish participatory action research as a paradigm involving those most affected throughout the research process, contrasting it with the more limited use of participatory tools and methods. We outline several aspects of participatory action research in health that would benefit from further theoretical and practical development, including: shifting power in the research process; the compatibility of participatory research with biomedical research; linking local inquiry and action to broader changes in policy and practice; and working with experiential knowledge in a rigorous research process. We highlight useful theory from a range of disciplines (including beyond the participatory research literature) that helps to understand some of the key processes and dynamics implicated in the issues highlighted and how this affects the outcomes achieved. We outline and share these conceptual/theoretical resources, identified as part of preparation for conducting a realist review on participatory action research in health, to contribute to ongoing reflection and development in the field.

Participation of community members and members of the public in the design of health interventions can increase their relevance and effectiveness. Such participation can also empower people, which has its own health benefits. Participation is also a good in its own right for the way it respects the value of involving the full range of people in any activity. Participatory approaches to health research are also increasingly valued for drawing on the insights of people’s lived experience, to lead to more relevant research and action. In this paper, we explore key remaining issues in participatory action research highlighted by academics, those involved in practical projects and in published literature. We also pull out some of the key ideas that have helped to better understand how participation works in practice. We distinguish ‘participatory action research’ as an approach to research that involves the people most affected by an issue throughout the research process, and contrast this with more limited use of participatory tools and methods at only one stage or another. Several aspects of participatory action research in health that could be better understood include: shifting power in the research process; how easily participatory research can be combined with biomedical research; whether things learned in participatory action research lead to broader changes in health services and policies; and how research can draw on peoples lived experiences in a balanced way. We highlight some useful ideas from other fields to help illuminate participatory action research in health. The paper is the first stage of a more comprehensive review our research team are conducting over the next two years and provides a summary of current ideas to contribute to ongoing discussions in the field of participatory action research in health.