Engaging People With Lived Experience in Mental Health Services and Research

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.

As the collection editors note, lived experience involvement and leadership are crucial to systems transformation but remain underrepresented and underresourced. As the collection suggests, Psychiatric Services has been publishing a significantly higher volume of work related to lived experience involvement in recent years. Moving forward, we expect the journal’s dedicated lived experience column and new lived experience workgroup to play substantive roles in strengthening and expanding involvement in review as well as authorship. Longer term, we hope that these initiatives will help inspire new norms and standards for mental health and psychiatry research journals in the United States.—Nev Jones, Ph.D., Coeditor, Lived Experience Inclusion & Leadership column