. 2023 May 1;6(5):e2315479.

doi: 10.1001/jamanetworkopen.2023.15479.

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

Karen L Fortuna^{1

2}, Stephanie Lebby^{2

3}, Pamela Geiger^{1

2}, Diane Johnson⁴, Sandi MacDonald^{2

5}, Ilana Chefetz⁶, Joelle C Ferron¹, Lisa St George⁷, Rebecca Rossom⁸, Joseph Kalisa^{7

9}, Tomislav Mestrovic^{10

11

12}, Joanne Nicholson¹³, Willie Pringle¹⁴, Armando J Rotondi^{15

16

17}, Lauren M Sippel^{1

2

18

19}, Amie Sica²⁰, Maria E Solesio²¹, Maggie Wright²², Yaara Zisman-Ilani²³, David Gambee^{1

2}, Julia Hill^{1

2}, Alison Brundrett²⁴, Corinne Cather^{25

26}, Taeho Greg Rhee^{27

28}, Gail L Daumit²⁹, Jessica Angel¹⁷, Ian Manion², Patricia E Deegan³⁰, Jason A Butler³¹, Nakristia Pitts³², Denise E Brodey³³, Aaron M Williams³⁴, Joseph Parks³⁴, Brie Reimann³⁴, J Todd Wahrenberger³⁵, Oscar Morgan³⁶, Daniel W Bradford^{37

38}, Nicole Bright³⁹, Elizabeth Stafford⁴⁰, Andrew R Bohm^{1

2

41}, Tracy Carney⁴², Claver Haragirimana⁷, Alisa Gold^{2

43}, Marianne Storm⁴⁴, Robert Walker^{2

43}

Affiliations

¹ Geisel School of Medicine, Department of Psychiatry, Dartmouth College; Concord, New Hampshire.
² Collaborative Design for Recovery and Health, Nashua, New Hampshire.
³ College of Nursing and Health Sciences, The University of Vermont, Burlington, Vermont.
⁴ Optum/UnitedHealthcare, Minneapolis, Minnesota.
⁵ International Association of Pre-Menstrual Disorders, Boston, Massachusetts.
⁶ The Hormel Institute, University of Minnesota, Austin, Minnesota.
⁷ OPROMAMER, Rwanda, Africa.
⁸ HealthPartners Institute, Minneapolis, Minnesota.
⁹ University of Rwanda, Rwanda, Africa.
¹⁰ Institute for Health Metrics and Evaluation, University of Washington, Seattle, Washington.
¹¹ Department of Health Metrics Sciences, University of Washington School of Medicine, Seattle, Washington.
¹² University North, University Centre Varazdin, Varazdin, Croatia.
¹³ The Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts.
¹⁴ Centerstone, Clarksville, Tennessee.
¹⁵ Center for Behavioral Health, University of Pittsburgh, Pittsburgh, Pennsylvania.
¹⁶ Center for Health Equity Research and Promotion, Veterans Affairs Pittsburgh Healthcare System, Pittsburgh, Pennsylvania.
¹⁷ VA New England Mental Illness, Research, Education and Clinical Center (MIRECC), VA Pennsylvania Healthcare System, Pittsburgh.
¹⁸ Northeast Program Evaluation Center, Department of Veterans Affairs, West Haven, Connecticut.
¹⁹ National Center for PTSD Evaluation Division, Department of Veterans Affairs, West Haven, Connecticut.
²⁰ Riverside Community Mental Health, Dedham, Massachusetts.
²¹ Rutgers University, Department of Biology, Camden, New Jersey.
²² Families in Trauma and Recovery, PeerLed, Lived Experience Social Enterprise, Fife Renewables Innovation Centre, Ajax Way, LEVEN, Fife, Scotland.
²³ Temple University, Department of Social and Behavioral Sciences, College of Public Health, Philadelphia, Pennsylvania.
²⁴ The Bridge, New York, New York.
²⁵ Department of Psychiatry, Massachusetts General Hospital, Boston, Massachusetts.
²⁶ Harvard Medical School, Boston, Massachusetts.
²⁷ VA New England Mental Illness, Research, Education and Clinical Center (MIRECC), VA Connecticut Healthcare System, West Haven, Connecticut.
²⁸ Department of Psychiatry, School of Medicine, Yale University, New Haven, Connecticut.
²⁹ Johns Hopkins University School of Medicine, Baltimore, Maryland.
³⁰ Pat Deegan and Associates, LLC.
³¹ Uncompagre Band of the Ute Indian Tribe from the Uintah and Ouray Agency in Fort Duchesne, Utah.
³² Seven Counties Services, Inc, Louisville, Kentucky.
³³ Forbes Senior Contributor and, Rebel Talent.
³⁴ The National Council for Mental Wellbeing, Washington, DC.
³⁵ Pittsburgh Mercy, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania.
³⁶ The Danya Institute, Silver Spring, Maryland.
³⁷ Office of Mental Health and Suicide Prevention, Department of Veterans Affairs, Washington, DC.
³⁸ Duke University School of Medicine, Durham, North Carolina.
³⁹ L.E.A.R.N. (Lived Experience Academic and Research Network) Queensland, Australia.
⁴⁰ National Alliance on Mental Illness, Arlington, Virginia.
⁴¹ The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine, Dartmouth College, Lebanon, New Hampshire.
⁴² Community Care Behavioral Health, UPMC Insurance Services Division, Pittsburgh, Pennsylvania.
⁴³ Massachusetts Department of Mental Health, Boston, Massachusetts.
⁴⁴ Health Science, University of Stavanger, Stavanger, Norway.

PMID: 37234010
PMCID: PMC11905947
DOI: 10.1001/jamanetworkopen.2023.15479

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

Karen L Fortuna et al. JAMA Netw Open. 2023.

. 2023 May 1;6(5):e2315479.

doi: 10.1001/jamanetworkopen.2023.15479.

Authors

Affiliations

¹ Geisel School of Medicine, Department of Psychiatry, Dartmouth College; Concord, New Hampshire.
² Collaborative Design for Recovery and Health, Nashua, New Hampshire.
³ College of Nursing and Health Sciences, The University of Vermont, Burlington, Vermont.
⁴ Optum/UnitedHealthcare, Minneapolis, Minnesota.
⁵ International Association of Pre-Menstrual Disorders, Boston, Massachusetts.
⁶ The Hormel Institute, University of Minnesota, Austin, Minnesota.
⁷ OPROMAMER, Rwanda, Africa.
⁸ HealthPartners Institute, Minneapolis, Minnesota.
⁹ University of Rwanda, Rwanda, Africa.
¹⁰ Institute for Health Metrics and Evaluation, University of Washington, Seattle, Washington.
¹¹ Department of Health Metrics Sciences, University of Washington School of Medicine, Seattle, Washington.
¹² University North, University Centre Varazdin, Varazdin, Croatia.
¹³ The Heller School for Social Policy and Management, Brandeis University, Waltham, Massachusetts.
¹⁴ Centerstone, Clarksville, Tennessee.
¹⁵ Center for Behavioral Health, University of Pittsburgh, Pittsburgh, Pennsylvania.
¹⁶ Center for Health Equity Research and Promotion, Veterans Affairs Pittsburgh Healthcare System, Pittsburgh, Pennsylvania.
¹⁷ VA New England Mental Illness, Research, Education and Clinical Center (MIRECC), VA Pennsylvania Healthcare System, Pittsburgh.
¹⁸ Northeast Program Evaluation Center, Department of Veterans Affairs, West Haven, Connecticut.
¹⁹ National Center for PTSD Evaluation Division, Department of Veterans Affairs, West Haven, Connecticut.
²⁰ Riverside Community Mental Health, Dedham, Massachusetts.
²¹ Rutgers University, Department of Biology, Camden, New Jersey.
²² Families in Trauma and Recovery, PeerLed, Lived Experience Social Enterprise, Fife Renewables Innovation Centre, Ajax Way, LEVEN, Fife, Scotland.
²³ Temple University, Department of Social and Behavioral Sciences, College of Public Health, Philadelphia, Pennsylvania.
²⁴ The Bridge, New York, New York.
²⁵ Department of Psychiatry, Massachusetts General Hospital, Boston, Massachusetts.
²⁶ Harvard Medical School, Boston, Massachusetts.
²⁷ VA New England Mental Illness, Research, Education and Clinical Center (MIRECC), VA Connecticut Healthcare System, West Haven, Connecticut.
²⁸ Department of Psychiatry, School of Medicine, Yale University, New Haven, Connecticut.
²⁹ Johns Hopkins University School of Medicine, Baltimore, Maryland.
³⁰ Pat Deegan and Associates, LLC.
³¹ Uncompagre Band of the Ute Indian Tribe from the Uintah and Ouray Agency in Fort Duchesne, Utah.
³² Seven Counties Services, Inc, Louisville, Kentucky.
³³ Forbes Senior Contributor and, Rebel Talent.
³⁴ The National Council for Mental Wellbeing, Washington, DC.
³⁵ Pittsburgh Mercy, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania.
³⁶ The Danya Institute, Silver Spring, Maryland.
³⁷ Office of Mental Health and Suicide Prevention, Department of Veterans Affairs, Washington, DC.
³⁸ Duke University School of Medicine, Durham, North Carolina.
³⁹ L.E.A.R.N. (Lived Experience Academic and Research Network) Queensland, Australia.
⁴⁰ National Alliance on Mental Illness, Arlington, Virginia.
⁴¹ The Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine, Dartmouth College, Lebanon, New Hampshire.
⁴² Community Care Behavioral Health, UPMC Insurance Services Division, Pittsburgh, Pennsylvania.
⁴³ Massachusetts Department of Mental Health, Boston, Massachusetts.
⁴⁴ Health Science, University of Stavanger, Stavanger, Norway.

PMID: 37234010
PMCID: PMC11905947
DOI: 10.1001/jamanetworkopen.2023.15479

Abstract

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.

PubMed Disclaimer

Conflict of interest statement

Conflict of Interest Disclosures: Dr Fortuna reported offering consulting through Social Wellness LLC during the conduct of the study. Dr Daumit reported receiving grants from the National Institute of Mental Health (NIMH) during the conduct of the study; and grants from NIMH and the National Heart, Lung, and Blood Institute outside the submitted work. Ms Pitts reported receiving grants from Dartmouth College outside the submitted work. Dr Parks reported receiving personal fees from Boehringer-Ingelheim outside the submitted work. No other disclosures were reported.

Figures

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References

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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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical