From Rhetoric to Action: Justice, Equity, Diversity, and Inclusion in Coordinated Specialty Care for Early Psychosis

CSC outcomes remain inadequate and inequitable. Secondary analyses of RAISE data have revealed that all primary benefits of specialized services, compared with treatment as usual, accrued mainly for individuals in the top socioeconomic status quartile (10). Worldwide data indicate that CSC benefits erode in the years after discharge (11). Recovery rates have remained essentially unchanged for decades across high-income countries (12). Alongside endorsement of involuntary intervention, the stigmatizing belief that individuals with schizophrenia are dangerous has grown in the United States since the 1990s (13). Even though people with lived experience and their families hold critical insights to address these challenges, they remain markedly underrepresented in CSC research. Underrepresentation is even more stark for individuals with lived experience and intersecting minoritized backgrounds (14).

As the chief CSC research structure, EPINET provides a clear illustration. In the first round of EPINET funding, hub leaders, the ENDCC, and the EPINET Steering Committee made decisions about policy and data collection without prominent inclusion of ethnoracial minority leadership or integration of lived experience into research. No formal mechanism for (or requirement of) service user participation was announced. The new call for EPINET funding recommends that applications “promot[e] effective communication and collaboration among service users, clinicians, program administrators, and scientists to boost participation in co-designed practice research”; service user input is “strongly suggest[ed]” (https://grants.nih.gov/grants/guide/rfa-files/RFA-MH-24-105.html). Such statements represent progress, yet precise guidance is needed for investigators in research planning and execution and for reviewers and program officers in proposal review and oversight.

Recommendations without concrete expectations and mechanisms to ensure accountability are unlikely to alter practice. Lack of diversity among national CSC leaders and investigators shapes the services that are prioritized and the questions that are pursued. For example, the literature on adherence to antipsychotic medications in early psychosis far surpasses that on peer support and service user experience of coercion or discrimination.

Policy makers, programs, clinicians, funders, and researchers must prioritize integrating people with lived experience and those from underrepresented ethnoracial and socioeconomic minoritized groups as consultants, trainees, coresearchers, and primary investigators. Individuals with intersectional marginalized experiences are uniquely positioned to contribute to solutions to the interaction between inequities and CSC access, engagement, and outcomes. The research interests of groups historically excluded from research should be nurtured at all levels.

Policy makers, programs, and clinicians can take several immediate steps. In practice, avenues for change include investment in trainees from underrepresented groups, including those with lived experience, across the education-to-practice pipeline. For roles that require formal training (e.g., social worker, counselor, psychologist, nurse, or psychiatrist), schools should foster interest in early psychosis research among students from underrepresented backgrounds and with lived experience. For roles that do not require formal education (e.g., vocational support or peer specialist), fellowships (e.g., the Health Resources and Services Administration’s Behavioral Health Workforce Education and Training program for paraprofessionals) should be leveraged to recruit trainees from underrepresented backgrounds and those with lived experience. Family members from marginalized backgrounds or with lived experience can be recruited as family peer support specialists and offer a distinctive perspective. Because disadvantaged individuals face barriers to many formal training programs, academic-community partnerships, such as those in EPINET, should be leveraged to support providers’ socioeconomic mobility, for example, in transitioning from lower-wage roles to higher education programs in mental health fields. Programs such as the Peers to Higher Education initiative of the Wayne State University School of Social Work provide a blueprint (https://socialwork.wayne.edu/peers). Culturally informed, recovery-oriented training should be provided to all team members, regardless of their background.

Investment in a diverse education and career development pipeline also is essential in research. Dedicated funding for trainees from underrepresented backgrounds and with lived experience will create opportunities for career development. Research staff positions could be used as targeted opportunities to train individuals personally affected by or underrepresented in the research workforce, and special funding could be created to enhance diversity among psychosis research leaders. Within our Connection Learning Healthcare System (CLHS) EPINET hub, we integrate students and researchers with lived experience in leadership roles, employ them as research staff, and provide opportunities to lead CLHS-linked projects. For example, a researcher who worked as a CSC peer specialist now leads research on peer support implementation across CLHS. Service users’ insights into unexplored research topics must be sought after completing CSC. For example, the service user–led Psychosis Outside the Box project (https://rethinkpsychosis.weebly.com) has called attention to aspects of the psychosis experience, including subjective impacts of language and labeling, that have been neglected in research and practice (15). NIMH and NIMH-appointed reviewers should value (and reward) investment in justice, equity, diversity, and inclusion through recognition, funding, and structure of research.

Research institutions must ensure that contributions of underrepresented minority individuals and those with lived experience are valued, not tokenized. Drawing on international work on the impact of participatory research methods (16), funding agencies should provide guidance on these methods and train reviewers to scrutinize participatory plans and reward meaningful involvement and penalize nominal inclusion. For example, advisory boards that offer service users and families no meaningful participation in project development or decision making should be recognized as suboptimal “minimal” inclusion. The U.K. National Institute for Health and Care Research's guidance on coproducing a research project could serve as a model.

Identity alone is not a substitute for sustained critical thought and investment in collective processes of critical consciousness (or conscientization, i.e., the development of a collective awareness and understanding of underlying mechanisms and effects of power, privilege, and oppression). Underrepresented minority individuals, especially those in early career stages, face great pressure to conform, as do lower-status providers in practice settings. Justice, equity, diversity, and inclusion is not simply about “bringing people to the table” but transforming the table through deep engagement with diverse perspectives and a willingness to change the status quo and cede one’s own power and control.

This Open Forum includes three coauthors with personal experience of intervention for early psychosis, four from ethnoracial minority groups, and several with other disabilities or family experiences of serious mental illness, including experiences of disability-related homelessness, poverty, and public sector social welfare services. Service experiences represented within this group include voluntary and involuntary hospitalizations, long-term use of antipsychotic medications, partial hospitalization, and disengagement from mental health services. More than half of the coauthors fall under demographic categories recognized as underrepresented in the NIH workforce. We also acknowledge that we are not diverse enough. We must transform services and policies so that leadership reflects those affected by psychosis.

The new round of EPINET funding represents an opportunity to move from rhetoric to action for justice, equity, diversity, and inclusion in CSC research and practice. Whenever entrenched inequality is at play, courage is required to own what has happened in the past and invest in change that is real, material, and grounded in the present with eyes to the future.

The authors acknowledge senior investigators in the Connection Learning Healthcare System who have taken substantive measures within this hub to make actionable changes.