“If You Want to Know About the Book, Ask the Author”: Enhancing Community Engagement Through Participatory Research in Clinical Mental Health Settings

Abstract

Participatory research, in which people with lived experience of the study phenomenon are involved as collaborators, has been conducted for decades; however, these innovations have struggled to take hold in mental health settings—until recently. The slow uptake of community partnered research in mental health has been unfortunate, especially because this field already suffers from poor community relations, pervasive community mistrust, and racial and ethnic disparities. But now, people with lived experience of severe mental illness—long considered to be “incapable” of functioning as co-researchers—are beginning to be included on research teams. However, training and opportunities for conducting such work are still lacking. This report describes a two-year initiative to improve the quality and quantity of participatory research being conducted in a department of psychiatry at a large medical school, which culminated in an innovative training program for both researchers and patients, developed in direct collaboration with stakeholders. In addition to detailing this program, we also discuss the deep legacy of mental health mistrust and our own efforts to address issues of social justice and health equity.

Keywords:

• clinical research
• health disparities
• mental health
• participatory research
• social justice

Acknowledgments

This project was funded by a Eugene Washington Award from the Patient-Centered Outcomes Research Institute. We gratefully acknowledge the stakeholder network, without whom this project would literally not have been possible. We also thank colleagues who hosted us for learning visits (Jean-François Pelletier) or participated as speakers (Jonathan Delman) during the course of the two years. In addition, we wish to thank the editors and reviewers for bringing together this important special issue on medical mistrust. The first author is currently supported by a CTSA Grant Number KL2 TR001862 from the National Center for Advancing Translational Science (NCATS), a component of the National Institutes of Health (NIH). This publication’s contents are solely the responsibility of the authors and do not necessarily represent the official view of NIH. The authors declare no conflict of interest.