Background: The COVID-19 pandemic has contributed to what national leaders have recently described as a national mental health crisis among youth and young adults, including college students. Despite a growing number of college suicide prevention and student well-being initiatives, research and interventions focused on campus crisis response, hospitalization, and the reintegration and inclusion of students with psychiatric disabilities are underdeveloped. The project team is unaware of any research initiatives focused on actively involving students with the full range of psychiatric disabilities in campus mental health patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER), nor that tracks to patient priorities reflective of those with longer-term psychiatric disabilities.
Proposed Solution to the Problem: The project team proposes a patient-advocate led convening designed to center college students with psychiatric disabilities in the process of identifying priority outcomes and interventions for research, including comparative effectiveness research.
Objectives: Primary objectives are to bring together a large and diverse group of stakeholders centering the perspectives of college students with psychiatric disabilities and develop a multi-stakeholder campus mental health intervention priority report with recommendations including outcomes measurement, target issues, and patient-preferred interventions. The report will be disseminated nationally.
Activities: The project team will convene three multi-stakeholder workgroups, focused on campus mental health crisis response, the integration and inclusion of students who have experienced crisis and/or been hospitalized, and campus accommodations for psychiatric disabilities. Each workgroup will prepare a targeted set of priorities and recommendations. These recommendations will be presented at a larger national convening, and a larger, diverse group of stakeholders will add and refine these recommendations.
Projected Outcomes and Outputs: The project will lead to an overarching set of priority outcomes and interventions as well as methodology-related recommendations for campus mental health research in the areas of crisis response, integration and inclusion, and accommodations. The report, along with additional multi-media deliverables tied to the report such as short videos and briefs, will be widely disseminated to researchers, policy makers, and advocates.
- Short-term outcomes during the project period include: Campus patient-stakeholders are significantly underrepresented in campus mental health research (and policy), particularly those falling under the priority groups for this convening (complex needs, serious mental illness, multiple disabilities, intersecting marginalized racial and sexual/gender identities). The project will help amplify the voices and perspectives of these groups and redirect national research and policy conversations to aspects of campus mental health response that include police involvement in crisis response, involuntary hospitalization, mandated leaves of absence, integration and inclusion following a leave or break, and disability accommodations. Given the ostensible prioritization of the “youth” and “campus” mental health crises, strategic dissemination of convening work in the above areas has the potential for significant impact and increased visibility of these vital topics and issues.
Second, in addition to recommendations and guidance, the project team will compile a (voluntary) list of all participants, their areas of expertise and experience, and contact information. This list will function as a resource for researchers who often do not know who to contact or involve, especially patient-stakeholders with more marginalized and underrepresented experiences and/or backgrounds.
- Medium-term outcomes (0-2 years post-project period) include: Members of the project team, all of whom are champions/advocates for expanded and more meaningful mental health lived experience involvement and leadership in research and policy, view the US mental health community as on the cusp of a more significant shift in terms of involvement policy. At the current time, the United States lags between virtually all other Anglophone and Western European countries and funders in terms of lived experience involvement. For example, the International Association of Mental Health Funders has been pushing for greater and more consistent commitment to live experience involvement, and non-US-based mental health research funders such as the Wellcome Trust have increasingly engaged in partnerships with the National Institutes of Health (NIH)/National Institutes of Mental Health that exert lateral influence on NIH’s currently very underdeveloped involvement policies and standards. The project team sees the proposed convening as one component of a more internal domestic push for greater lived experience/patient involvement in mental health research and policy that, in combination with external pressures, will help push US funders and researchers toward embracing quality involvement practices. Such a shift is needed across the board but arguably particularly pronounced vis-à-vis underrepresented and high-risk groups (i.e., those prioritized within this project).
Specific to PCORI, the project team’s collective experience as consultants within multiple PCORI-funded PCOR/CER projects is that while PCORI’s aspiration is meaningful involvement, this is still not necessarily the reality in funded projects. Hence, even with respect to PCORI-funded research, the project team sees the proposed convening as playing a role in helping shift projects and practice toward meaningful involvement and engagement with priorities generated by primary patient stakeholders, rather than (or at least more inequitably in relation to) non-lived experience researchers and decision makers.
- Long-term outcomes (3+ years post-project period) include: The project team views longer-term outcomes and impact as continuations of the impact noted above (0-2 years), with the additional hope that projects originally formed through, inspired by, or informed by the proposed convening will actually receive funding during this time period and commence. This includes projects the core convening team plans to develop in the future which will also be directly informed by the proposed convening.
The project team also hopes that as the field continues to embrace expanded and more meaningful patient-stakeholder involvement, funders may increasingly look to patient-led priorities such as those developed in this project as essential items for consideration as project teams apply for funding and justify prioritized research approaches and focus topics, including the proposed recommendations and guidance.
Patient and Stakeholder Engagement Plan: The project is patient-led and based at one of the nation's leading mental health advocacy organizations, Mental Health America. The project lead and both co-leads identify as advocates with direct experience of psychiatric disabilities and use of campus mental health and disability services. Fifty percent of workgroup and national convening participants will be college students with psychiatric disabilities. The remaining 50% will represent other stakeholder groups, including policy makers, clinicians, and researchers.
Project Collaborators: Mental Health America is the project lead, in partnership with the University of Pittsburgh (primary research partner) and the Bazelon Center for Mental Health Law, a national leader in campus mental health policy which will bring substantial expertise on legal aspects of campus mental health services and supports to the project.