Lived Experience-Led Research Agenda to Address Early Death in People With a Diagnosis of a Serious Mental Illness: A Consensus Statement.

Importance: People with serious mental illness (SMI), defined as a diagnosis of schizophrenia spectrum disorder, bipolar disorder, or disabling major depressive disorder) die approximately 10 to 25 years earlier than the general population. Objective: To develop the first-ever lived experience-led research agenda to address early mortality in people with SMI. Evidence Review: A virtual 2-day roundtable comprising 40 individuals convened on May 24 and May 26, 2022, and used a virtual Delphi method to arrive at expert group consensus. Participants responded to 6 rounds of virtual Delphi discussion via email that prioritized research topics and agreement on recommendations. The roundtable was composed of individuals with lived experience of mental health and/or substance misuse, peer support specialists, recovery coaches, parents and caregivers of people with SMI, researchers and clinician-scientists with and without lived experience, policy makers, and patient-led organizations. Twenty-two of 28 (78.6%) of the authors who provided data represented people with lived experiences. Roundtable members were selected by reviewing the peer-reviewed and gray literature on early mortality and SMI, direct email, and snowball sampling. Findings: The following recommendations are presented in order of priority as identified by the roundtable participants: (1) improve the empirical understanding of the direct and indirect social and biological contributions of trauma on morbidity and early mortality; (2) advance the role of family, extended families, and informal supporters; (3) recognize the importance of co-occurring disorders and early mortality; (4) redefine clinical education to reduce stigma and support clinicians through technological advancements to improve diagnostic accuracy; (5) examine outcomes meaningful to people with an SMI diagnosis, such as loneliness and sense of belonging, and stigma and their complex relationship with early mortality; (6) advance the science of pharmaceuticals, drug discovery, and choice in medication use; (7) use precision medicine to inform treatment; and (8) redefine the terms system literacy and health literacy. Conclusions and Relevance: The recommendations of this roundtable are a starting point for changing practice and highlighting lived experience-led research priorities as an option to move the field forward.

Peer Support Specialists' Perspectives of a Standard Online Research Ethics Training: Qualitative Study.

BACKGROUND: Certified peer support specialists (CPS) have a mental health condition and are trained and certified by their respective state to offer Medicaid reimbursable peer support services. CPS are increasingly involved as partners in research studies. However, most research ethics training in the protection of human subjects is designed for people who, unlike CPS, have had exposure to prior formal research training. OBJECTIVE: The aim of this study is to explore the perspectives of CPS in completing the Collaborative Institutional Training Initiative Social and Behavioral Responsible Conduct of Research online training. METHODS: A total of 5 CPS were recruited using a convenience sample framework through the parent study, a patient-centered outcomes research study that examined the comparative effectiveness of two chronic health disease management programs for people with serious mental illness. Participants independently completed the Collaborative Institutional Training Initiative Social and Behavioral Responsible Conduct of Research online training. All participants completed 15 online modules in approximately 7-9 hours and also filled out a self-report measure of executive functioning (the Adult Executive Functioning Inventory [ADEXI]). Qualitative data were collected from a 1-hour focus group and qualitative analysis was informed by the grounded theory approach. The codebook consisted of codes inductively derived from the data. Codes were independently assigned to text, grouped, and checked for themes. Thematic analysis was used to organize themes. RESULTS: Passing scores for each module ranged from 81%-89%, with an average of 85.4% and a median of 86%. The two themes that emerged from the focus group were the following: comprehension (barrier) and opportunity (facilitator). Participants had a mean score of 27.4 on the ADEXI. CONCLUSIONS: The CPS perceived the research ethics online training as an opportunity to share their lived experience expertise to enhance current research efforts by nonpeer scientists. Although the CPS completed the online research ethics training, the findings indicate CPS experienced difficulty with comprehension of the research ethics online training materials. Adaptations may be needed to facilitate uptake of research ethics online training by CPS and create a workforce of CPS to offer their lived experience expertise alongside peer and nonpeer researchers.

Co-production of the quality of patient-centered outcomes research partnerships instrument for people with mental health conditions.

Mounting scientific evidence over the past decades in the field of psychiatry has shown community engagement in research produces more relevant research, increased uptake of research findings, and better clinical outcomes. Despite the need for the integration of community engagement methodologies into the scientific method, doctoral and master's level competencies in the field of psychiatry commonly do not include dedicated training or coursework on community engagement methodologies. Without appropriate training or research experience, attempts to facilitate community engagement are often ineffective and burdensome and leave stakeholders feeling disenfranchised. The goal of this study was to co-produce an instrument designed to improve the quality of community engagement research practices by measuring the degree to which researchers have partnered with psychiatric patient stakeholders. The development of the Quality of Patient-Centered Outcomes Research Partnerships Instrument included an iterative co-production process with psychiatric patient stakeholders and scientists, including item formulation, followed by two phases of cognitive interviews with psychiatric patient stakeholders to assess and refine instrument items. A pilot study was conducted to assess acceptability and feasibility. The pilot study of the Patient-Centered Outcomes Research Partnerships Instrument suggested feasibility and acceptability among psychiatric patient stakeholders. The Quality of Patient-Centered Outcomes Research Partnerships Instrument may be a valuable tool to enhance the quality of community engagement research practices within the field of psychiatry.