Lived Experience-Led Research Agenda to Address Early Death in People With a Diagnosis of a Serious Mental Illness: A Consensus Statement.
Journal: JAMA network open
Volume: 6
Issue: 5
Year of Publication: 2023
Affiliated Institutions:
Geisel School of Medicine, Department of Psychiatry, Dartmouth College; Concord, New Hampshire.
Collaborative Design for Recovery and Health, Nashua, New Hampshire.
Optum/UnitedHealthcare, Minneapolis, Minnesota.
The Hormel Institute, University of Minnesota, Austin, Minnesota.
OPROMAMER, Rwanda, Africa.
HealthPartners Institute, Minneapolis, Minnesota.
Institute for Health Metrics and Evaluation, University of Washington, Seattle, Washington.
The Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts.
Centerstone, Clarksville, Tennessee.
Center for Behavioral Health, University of Pittsburgh, Pittsburgh, Pennsylvania.
Riverside Community Mental Health, Dedham, Massachusetts.
Rutgers University, Department of Biology, Camden, New Jersey.
Families in Trauma and Recovery, PeerLed, Lived Experience Social Enterprise, Fife Renewables Innovation Centre, Ajax Way, LEVEN, Fife, Scotland.
Temple University, Department of Social and Behavioral Sciences, College of Public Health, Philadelphia, Pennsylvania.
The Bridge, New York, New York.
Department of Psychiatry, Massachusetts General Hospital, Boston, Massachusetts.
VA New England Mental Illness, Research, Education and Clinical Center (MIRECC), VA Connecticut Healthcare System, West Haven, Connecticut.
Johns Hopkins University School of Medicine, Baltimore, Maryland.
VA New England Mental Illness, Research, Education and Clinical Center (MIRECC), VA Pennsylvania Healthcare System, Pittsburgh.
Pat Deegan and Associates, LLC.
Uncompagre Band of the Ute Indian Tribe from the Uintah and Ouray Agency in Fort Duchesne, Utah.
Seven Counties Services, Inc, Louisville, Kentucky.
Forbes Senior Contributor and, Rebel Talent.
The National Council for Mental Wellbeing, Washington, DC.
Pittsburgh Mercy, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania.
The Danya Institute, Silver Spring, Maryland.
Office of Mental Health and Suicide Prevention, Department of Veterans Affairs, Washington, DC.
L.E.A.R.N. (Lived Experience Academic and Research Network) Queensland, Australia.
National Alliance on Mental Illness, Arlington, Virginia.
Community Care Behavioral Health, UPMC Insurance Services Division, Pittsburgh, Pennsylvania.
Health Science, University of Stavanger, Stavanger, Norway.
Abstract summary
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.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.
Authors & Co-authors:
Fortuna Karen L KL
Lebby Stephanie S
Geiger Pamela P
Johnson Diane D
MacDonald Sandi S
Chefetz Ilana I
Ferron Joelle C JC
St George Lisa L
Rossom Rebecca R
Kalisa Joseph J
Mestrovic Tomislav T
Nicholson Joanne J
Pringle Willie W
Rotondi Armando J AJ
Sippel Lauren M LM
Sica Amie A
Solesio Maria E ME
Wright Maggie M
Zisman-Ilani Yaara Y
Gambee David D
Hill Julia J
Brundrett Alison A
Cather Corinne C
Rhee Taeho Greg TG
Daumit Gail L GL
Angel Jessica J
Manion Ian I
Deegan Patricia E PE
Butler Jason A JA
Pitts Nakristia N
Brodey Denise E DE
Williams Aaron M AM
Parks Joseph J
Reimann Brie B
Wahrenberger J Todd JT
Morgan Oscar O
Bradford Daniel W DW
Bright Nicole N
Stafford Elizabeth E
Bohm Andrew R AR
Carney Tracy T
Haragirimana Claver C
Gold Alisa A
Storm Marianne M
Walker Robert R
Study Outcome
Source Link: Visit source