Past Work and Publications | NAMI

Advancing Discovery Summit Series

Beginning in 2014, NAMI partnered with the Stanley Center for Psychiatric Research at the Broad Institute of MIT and Harvard to lead the Advancing Discovery Summit series. Inspired by the need for large-scale collaborative research in serious mental illness, the series was a concentrated effort to bring together stakeholders from many sectors – advocacy, academia, industry, and government – to “think big” about what might be possible. The series concluded in 2019 after achieving its ultimate advocacy goal, the establishment of the Accelerating Medicines Partnership for Schizophrenia (AMP-SCZ).

Time for New Schizophrenia Rx (2014)
This compelling editorial from Dr. Steve Hyman, Director of the Stanley Center for Psychiatric Research provided the initial motivation for the Advancing Discovery Summit.

Working Together to Advance Discovery and Reignite Hope (2018)
NAMI’s Dr. Ken Duckworth, Dr. Teri Brister, and Elizabeth Stafford, along with the Broad Institute’s Dr. Rosy Hosking, developed this white paper to celebrate the progress of the Advancing Discovery Summit and place it in an important historical context.

Research Reports

On Pins & Needles (2016)
Mental health research often focuses on individuals with mental health conditions or on providers, so this study on caregivers – people who act as regular unpaid care providers for an adult with a moderate-to-significant mental health condition – fills an important knowledge gap. This study was conducted by the National Alliance for Caregiving with support from Mental Health America and NAMI.

Seeking Treatment in an Emergency Department During a Psychiatric Emergency (2015)
Receiving mental health care at an emergency department (ED) can sometimes feel like an unpredictable and imperfect experience. This study collected responses from several thousand people to identify the most important factors that can make an ED encounter better or worse in order to help educate health care providers and improve care in the future.

Resource And Implementation Guides

Navigating a Mental Health Crisis (2018, English and Spanish)
Like any other health crisis, it’s important to address a mental health emergency quickly and effectively. This guide outlines what can contribute to a crisis, warning signs that a crisis is emerging, strategies to help de-escalate a crisis, available resources, and more.

Circle of Care: A Guidebook for Mental Health Caregivers (2017, English and Spanish)
NAMI has partnered with the National Alliance for Caregiving (NAC) to create this guidebook, which provides resources and information to help friends, family, and others who care for an adult with a mental health condition.

Starting the Conversation: College and Your Mental Health (2016)
To help put a thoughtful plan into place should a mental health condition arise, NAMI and The Jed Foundation have created this guide to help start the conversation. It offers parents and students the opportunity to learn more about mental health, including details on privacy laws and how mental health information can be shared.

Academic Publications

Securing Direct Stakeholder Feedback to Inform Clinical Research in Serious Mental Illness: Results of a Patient and Family Perspectives Survey (2023)
In this article, co-authors, including Susanne Jakob of the Stanley Center for Psychiatric Research and NAMI’s Elizabeth Stafford, find that individuals diagnosed with schizophrenia spectrum conditions and their caregivers are generally interested in engaging with clinical research. While survey respondents expressed significant discomfort with certain research procedures, the authors demonstrate that educational materials tailored to the concerns voiced by these populations may increase meaningful engagement.

Lived Experience-Led Research Agenda to Address Early Death in People with a Diagnosis of a Serious Mental Illness (2023)
In this consensus statement, co-authors, including Dr. Karen L. Fortuna of Dartmouth’s Geisel School of Medicine and NAMI’s Elizabeth Stafford, discuss the findings of the Early Mortality in People with SMI Roundtable – a first-of-its-kind effort to create a research agenda addressing non-biological causes of early death in people with SMI directly informed by those most impacted by these conditions.

Impact of Major Depressive Disorder on Comorbidities: A Systematic Literature Review (2022)
In this systematic review, co-authors, including Alix Arnaud of Sage Therapeutics and NAMI’s Dr. Teri Brister and Dr. Ken Duckworth, highlight previous research finding that depression is significantly associated with increased incidence or worsening of comorbid conditions, such as dementia, cardiovascular disease, and drug and alcohol use – emphasizing the need for both early treatment of depression and improved integration of mental and general health care.

Strategies and Foundations for Scientific Discovery in Longitudinal Studies of Bipolar Disorder (2022)
In this article, co-authors, including Dr. Melvin McInnis of the University of Michigan and NAMI’s Dr. Teri Brister, describe considerations for developing a global network of longitudinal cohort studies to better understand what causes bipolar disorder, what influences a person’s experience of the condition, and how we may improve treatment outcomes. Recommendations include data collection on clinical domains such as neurocognitive function, as well as related to personality and life story.

Needs and Experiences of Users of Digital Navigation Tools for Mental Health Treatment and Supportive Services: Survey Study (2021)
In this peer-reviewed article co-authored by NAMI’s Elizabeth Stafford, Dr. Teri Brister, and Dr. Ken Duckworth, and Natali Rauseo-Ricupero and Sarah Lagan of Beth Israel Deaconess Medical Center, results from a public survey identify challenges faced by individuals and family members when searching online for mental health services and suggest a need for improved digital navigation resources to meet user needs.


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