Bridging Science and Hope: integrating and Communicating Lived experience in Accelerating Medicines Partnership® Schizophrenia Program

Ameneh Asgari-Targhi; Beier Yao; Lisa Brown; Suzanne Garcia; Arundati Nagendra; Kota Chin; Tashrif Billah; Nora Penzel; Omar John; Nicholas Prunier; Simone Veale; Elana Kotler; Grace R Jacobs; Ming Zhan; Michael J Coleman; Sylvain Bouix; Ofer Pasternak; Guillermo Cecci; Justin T Baker; Daniel H Mathalon; Sinead M Kelly; Cheryl M Corcoran; Abraham Reichenberg; Inge Winter-van Rossum; Marek Kubicki; Jessica Spark; Dominic Dwyer; Celso Arango; Paolo Fusar-Poli; Monica Calkins; Jai L Shah; Vijay Mittal; Andrew Thompson; Patrick D McGorry; René S Kahn; John M Kane; Carrie E Bearden; Scott W Woods; Barnaby Nelson; Martha E Shenton; Brandon Staglin; Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ); Carlos A Larrauri; Kathryn Eve Lewandowski; Tina Kapur

doi:10.1038/s41537-025-00572-7

Bridging Science and Hope: integrating and Communicating Lived experience in Accelerating Medicines Partnership® Schizophrenia Program

Schizophrenia (Heidelb). 2025 Apr 7;11(1):57. doi: 10.1038/s41537-025-00572-7.

Authors

Ameneh Asgari-Targhi^#¹, Beier Yao^#^{2

3}, Lisa Brown¹, Suzanne Garcia⁴, Arundati Nagendra⁵, Kota Chin⁶, Tashrif Billah⁷, Nora Penzel^{6

7}, Omar John⁶, Nicholas Prunier⁷, Simone Veale⁵, Elana Kotler⁶, Grace R Jacobs⁷, Ming Zhan⁴, Michael J Coleman⁷, Sylvain Bouix^{7

8}, Ofer Pasternak^{1

6

7}, Guillermo Cecci⁹, Justin T Baker^{3

10}, Daniel H Mathalon^{11

12}, Sinead M Kelly⁷, Cheryl M Corcoran¹³, Abraham Reichenberg¹³, Inge Winter-van Rossum¹³, Marek Kubicki^{1

7}, Jessica Spark^{14

15}, Dominic Dwyer^{14

15}, Celso Arango¹⁶, Paolo Fusar-Poli^{17

18}, Monica Calkins¹⁹, Jai L Shah^{20

21}, Vijay Mittal²², Andrew Thompson^{14

15}, Patrick D McGorry^{14

15}, René S Kahn¹³, John M Kane^{23

24}, Carrie E Bearden^{25

26}, Scott W Woods^{27

28}, Barnaby Nelson^{14

15}, Martha E Shenton^{1

6

7}, Brandon Staglin²⁹; Accelerating Medicines Partnership® Schizophrenia (AMP® SCZ); Carlos A Larrauri^{30

31}, Kathryn Eve Lewandowski^{2

3}, Tina Kapur³²

Affiliations

¹ Department of Radiology, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.
² Psychotic Disorders Division, McLean Hospital, Belmont, MA, USA.
³ Department of Psychiatry, Harvard Medical School, Boston, MA, USA.
⁴ National Institute of Mental Health, Bethesda, MD, USA.
⁵ Schizophrenia and Psychosis Action Alliance, Virginia, USA.
⁶ Department of Psychiatry, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA.
⁷ Department of Psychiatry, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.
⁸ Department of Software Engineering and Information Technology, École de technologie supérieure, Montreal, QC, Canada.
⁹ IBM T.J. Watson Research Center, New York, NY, USA.
¹⁰ Institute for Technology in Psychiatry, McLean Hospital, Belmont, MA, USA.
¹¹ Department of Psychiatry and Behavioral Sciences and Weill Institute for Neurosciences, University of California San Francisco, San Francisco, CA, USA.
¹² Mental Health Service 116D, Veterans Affairs San Francisco Health Care System, San Francisco, CA, USA.
¹³ Department of Psychiatry, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
¹⁴ Orygen, Parkville, VC, Australia.
¹⁵ Centre for Youth Mental Health, The University of Melbourne, Parkville, VC, Australia.
¹⁶ Department of Child and Adolescent Psychiatry, Institute of Psychiatry and Mental Health, Hospital General Universitario Gregorio Marañón, IiSGM, CIBERSAM, Instituto de Salud Carlos III, School of Medicine, Universidad Complutense, Madrid, Spain.
¹⁷ Department of Psychosis Studies, King's College London, London, UK.
¹⁸ Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy.
¹⁹ Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
²⁰ Douglas Research Centre, Montreal, QC, Canada.
²¹ Department of Psychiatry, McGill University, Montreal, Quebec, Canada.
²² Department of Psychology, Northwestern University, Evanston, IL, USA.
²³ Department of Psychiatry, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, USA.
²⁴ Institute of Behavioral Science, Feinstein Institutes for Medical Research, Northwell Health, Manhasset, NY, USA.
²⁵ Departments of Psychiatry and Biobehavioral Sciences & Psychology, Semel Institute for Neuroscience and Human Behavior, University of California, Los Angeles, CA, USA.
²⁶ Department of Psychology, University of California, Los Angeles, CA, USA.
²⁷ Department of Psychiatry, Yale University School of Medicine, New Haven, CT, USA.
²⁸ Connecticut Mental Health Center, New Haven, CT, USA.
²⁹ One Mind, Rutherford, CA, USA.
³⁰ National Alliance on Mental Illness, Arlington, VA, USA.
³¹ University of Michigan Law School, Ann Arbor, MI, USA.
³² Department of Radiology, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA. Tkapur@bwh.harvard.edu.

^# Contributed equally.

Abstract

The Accelerating Medicines Partnership Schizophrenia (AMP® SCZ) program integrates lived experience into psychosis research, leveraging over three decades of foundational studies to improve research quality, promote community engagement, and ensure ethical implementation of precision psychiatry. Lived experience is embedded in the program’s governance, shaping study protocols, recruitment strategies, and digital tools such as the mindLAMP platform. Study sites also integrate lived experience through youth advisory boards, peer support specialists, and advisory committees, ensuring diverse perspectives inform research design and implementation. These efforts aim to develop predictive tools and therapeutic strategies while maintaining ethical and participant-centered practices. Advocacy organizations, such as the National Alliance on Mental Illness (NAMI), have fostered collaboration among government, industry, and academic partners, shaping outreach and engagement strategies. Dissemination efforts, led by the Website and Outreach Workgroup (WOW), include an accessible, Section 508-compliant website and co-designed resources, building trust and engagement within communities. By integrating lived experience at every stage, the program aims to foster trust, enhance research outcomes, and inform future strategies for treatment and prevention. Watch Dr. Tina Kapur, Dr. Kathryn Eve Lewandowski, and Dr. Carlos A. Larrauri discuss this article and their work at: https://vimeo.com/1050068801.

Abstract

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