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Lived Experience-Led Research Agenda to Address Early Death in People With a Diagnosis of a Serious Mental Illness: A Consensus Statement.
Fortuna KL, Lebby S, Geiger P, Johnson D, MacDonald S, Chefetz I, Ferron JC, St George L, Rossom R, Kalisa J, Mestrovic T, Nicholson J, Pringle W, Rotondi AJ, Sippel LM, Sica A, Solesio ME, Wright M, Zisman-Ilani Y, Gambee D, Hill J, Brundrett A, Cather C, Rhee TG, Daumit GL, Angel J, Manion I, Deegan PE, Butler JA, Pitts N, Brodey DE, Williams AM, Parks J, Reimann B, Wahrenberger JT, Morgan O, Bradford DW, Bright N, Stafford E, Bohm AR, Carney T, Haragirimana C, Gold A, Storm M, Walker R. Lived Experience-Led Research Agenda to Address Early Death in People With a Diagnosis of a Serious Mental Illness: A Consensus Statement. JAMA Network Open. 2023 May 1; 6(5):e2315479.
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.
To develop the first-ever lived experience-led research agenda to address early mortality in people with SMI.
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.
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.