Engaging People with Lived Experience in Mental Health Services and Research

Published March 2022

Engaging people who have lived experience of mental health conditions and services (including patients, family members, and other stakeholders) can add significant value to research, policy, and program development. Individuals with lived experience have been drivers of change in the mental health system by leading research and programs, partnering with researchers, or consulting during the research process. Advancing the use of peer support programs, advocating for the rights of people with psychiatric disabilities, and creating alternatives to traditional service models (e.g., peer-run respites) are among the contributions that people with lived experience have made to the field. Despite their valuable perspectives and unique understanding of services and systems, individuals with lived experience continue to be excluded from research, policy making, and organizational leadership, more so for individuals with psychiatric disabilities, more deeply stigmatized conditions, and greater experience with public systems.

Community-engaged and community-based participatory methods help to ensure that valuable community perspectives are prioritized in both research and implementation. Communities often know the barriers to care and other challenges facing their members and know how to deploy resources efficiently and effectively to serve the people who need them most. This collection provides an overview of recent research and is a call to action regarding the integration of individuals with lived experience as leaders and in shaping service delivery as well as research design, measurement, and conceptualization.

Please note that not all articles in this curated collection are available without a subscription. For access, learn about subscribing to Psychiatric Services.

 

Reconceptualizing Recovery: Integrating Lived Experience Perspectives Into Traditional Eating Disorder Recovery Frameworks
Therese E. Kenny, M.Sc., and Stephen P. Lewis, Ph.D.
2021, Volume 72, Issue 8, pp. 966–968

Lived Experience, Research, Leadership, and the Transformation of Mental Health Services: Building a Researcher Pipeline
Nev Jones, Ph.D., Kendall Atterbury, Ph.D., Louise Byrne, Ph.D., Michelle Carras, Ph.D., Marie Brown, Ph.D., Peter Phalen, Ph.D.
2021, Volume 72, 5, pp. 591–593

Putting the “Self” in Self-Injury Research: Inclusion of People With Lived Experience in the Research Process
Stephen P. Lewis, Ph.D., and Penelope Hasking, Ph.D.
2019, Volume 70, Issue 11, pp. 1058–1060

First-Person Accounts of Change Among Young Adults Enrolled in Coordinated Specialty Care for First-Episode Psychosis
Tamara C. Daley, Ph.D., Nev Jones, Ph.D., Preethy George, Ph.D., Abram Rosenblatt, Ph.D.
2020, Volume 71, Issue 12, pp. 1277–1284

First-Person Perspectives on Prescriber-Service User Relationships in Community Mental Health Centers
Annalee Johnson-Kwochka, B.A., Elizabeth Carpenter-Song, Ph.D., Ida Griesemer, B.A., Cara Nikolajski, M.P.H., Nancy Parrotta, M.A., L.P.C., Kim L. MacDonald-Wilson, Sc.D., C.R.C.
2017, Volume 68, Issue 9, pp. 947–951

How Occupationally High-Achieving Individuals With a Diagnosis of Schizophrenia Manage Their Symptoms
Amy N. Cohen, Ph.D., Alison B. Hamilton, Ph.D., M.P.H., Elyn R. Saks, J.D., Ph.D., Dawn L. Glover, M.A., Shirley M. Glynn, Ph.D., John S. Brekke, Ph.D., Stephen R. Marder, M.D.
2017, Volume 68, Issue 4, pp. 324–329

Leadership and Characteristics of Nonprofit Mental Health Peer-Run Organizations Nationwide
Laysha Ostrow, Ph.D., M.P.P., and Stephania L. Hayes, M.A., O.T.R.
2015, Volume 66, Issue 4, pp. 421–425

Impact of the 2nd Story Peer Respite Program on Use of Inpatient and Emergency Services
Bevin Croft, M.A., M.P.P., and Nilüfer İsvan, Ph.D.
2015, Volume 66, Issue 6, pp. 632–637

Community Engagement Mental Health Model for Home Treatment of Psychosis in Jamaica
Danielle Nelson, D.M., Geoffrey Walcott, D.M., Christine Walters, Ph.D., Frederick W. Hickling, D.M.
2020, Volume 71, Issue 5, pp. 522–524

A Community-Partnered, Participatory, Cluster-Randomized Study of Depression Care Quality Improvement: Three-Year Outcomes
Michael K. Ong, M.D., Ph.D., Loretta Jones, M.A., Th.D., Wayne Aoki, Ph.D., Thomas R. Belin, Ph.D., Elizabeth Bromley, M.D., Ph.D., Bowen Chung, M.D., M.S.H.S., Elizabeth Dixon, R.N., Ph.D., Megan Dwight Johnson, M.D., M.P.H., Felica Jones, A.A., Paul Koegel, Ph.D., Dmitry Khodyakov, Ph.D., Craig M. Landry, Ph.D., Elizabeth Lizaola, M.P.H., Norma Mtume, M.A., M.H.S., Victoria K. Ngo, Ph.D., Judith Perlman, M.A., Esmeralda Pulido, B.A., Vivian Sauer, L.C.S.W., Cathy D. Sherbourne, Ph.D., Lingqi Tang, Ph.D., Ed Vidaurri, L.C.S.W., Yolanda Whittington, L.C.S.W., Pluscedia Williams, B.A., Aziza Lucas-Wright, M.Ed., Lily Zhang, M.S., Marvin Southard, D.S.W., Jeanne Miranda, Ph.D., Kenneth Wells, M.D., M.P.H.
2017, Volume 68, Issue 12, pp. 1262–1270

Participation in Training for Depression Care Quality Improvement: A Randomized Trial of Community Engagement or Technical Support
Bowen Chung, M.D., M.S.H.S., Victoria K. Ngo, Ph.D., Michael K. Ong, M.D., Ph.D., Esmeralda Pulido, B.A., Felica Jones, James Gilmore, M.B.A., Norma Stoker-Mtume, M.A., M.H.S., Megan Johnson, M.D., Lingqi Tang, Ph.D., Kenneth Brooks Wells, M.D., M.P.H., Cathy Sherbourne, Ph.D., Jeanne Miranda, Ph.D.
2015, Volume 66, Issue 8, pp. 831–839

Implementation of a Community-Partnered Research Suicide-Risk Management Protocol: Case Study From Community Partners in Care
Nichole Goodsmith, M.D., Ph.D., Lily Zhang, M.S., Michael K. Ong, M.D., Ph.D., Victoria K. Ngo, Ph.D., Jeanne Miranda, Ph.D., Susan Hirsch, M.P.H., Felica Jones, A.A., Kenneth Wells, M.D., M.P.H., Bowen Chung, M.D., M.S.H.S.
2021, Volume 72, Issue 3, pp. 281–287

Going to the Source: Creating a Citizenship Outcome Measure by Community-Based Participatory Research Methods
Michael Rowe, Ph.D., Ashley Clayton, M.A., Patricia Benedict, B.A., Chyrell Bellamy, M.S.W., Ph.D., Kimberly Antunes, B.A., Rebecca Miller, Ph.D., Jean-Francois Pelletier, Ph.D., Erica Stern, B.A., and Maria J. O’Connell, Ph.D.
2012, Volume 63, Issue 5, pp. 445–450

Public-Academic Partnerships: Evidence-Based Implementation: The Role of Sustained Community-Based Practice and Research Partnerships
Amy M. Kilbourne, Ph.D., M.P.H., Mary Spink Neumann, Ph.D., Jeanette Waxmonsky, Ph.D., Mark S. Bauer, M.D., Hyungin Myra Kim, Ph.D., Harold Alan Pincus, M.D., and Marshall Thomas, M.D.
2012, Volume 63, Issue 3, pp. 205–207

 

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