Article
Author: Bright, Nicole ; Storm, Marianne ; Geiger, Pamela ; Walker, Robert ; Nicholson, Joanne ; Morgan, Oscar ; Hill, Julia ; Chefetz, Ilana ; Parks, Joseph ; Rossom, Rebecca ; Kalisa, Joseph ; Lebby, Stephanie ; Daumit, Gail L. ; Pringle, Willie ; Stafford, Elizabeth ; Bohm, Andrew R. ; Gambee, David ; Carney, Tracy ; Wahrenberger, J. Todd ; Cather, Corinne ; Brundrett, Alison ; Butler, Jason A. ; Zisman-Ilani, Yaara ; Ferron, Joelle C. ; Gold, Alisa ; Wright, Maggie ; Solesio, Maria E. ; Deegan, Patricia E. ; Fortuna, Karen L. ; Rhee, Taeho Greg ; Sica, Amie ; MacDonald, Sandi ; Williams, Aaron M. ; Sippel, Lauren M. ; Mestrovic, Tomislav ; Brodey, Denise E. ; Angel, Jessica ; Johnson, Diane ; Pitts, Nakristia ; Rotondi, Armando J. ; Reimann, Brie ; Haragirimana, Claver ; Manion, Ian ; St George, Lisa ; Bradford, Daniel W.
ImportancePeople 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.ObjectiveTo develop the first-ever lived experience–led research agenda to address early mortality in people with SMI.Evidence ReviewA 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.FindingsThe 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 RelevanceThe 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.