Bridging Science and Hope: integrating and Communicating Lived experience in Accelerating Medicines Partnership® Schizophrenia Program
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 .
Authors
- Sylvain Bouix (ORCID: https://orcid.org/0000-0003-1326-6054)
- Celso Arango (ORCID: https://orcid.org/0000-0003-3382-4754)
- John M. Kane (ORCID: https://orcid.org/0000-0002-2628-9442)
- Nora Penzel (ORCID: https://orcid.org/0000-0003-1624-386X)
- Jai L. Shah (ORCID: https://orcid.org/0000-0002-7549-6990)
- Nicholas Prunier
- Carrie E. Bearden (ORCID: https://orcid.org/0000-0002-8516-923X)
- Arundati Nagendra (ORCID: https://orcid.org/0000-0003-0347-399X)
- Daniel H. Mathalon (ORCID: https://orcid.org/0000-0001-6090-4974)
- Carlos A. Larrauri (ORCID: https://orcid.org/0000-0002-0948-7009)
- Ming Zhan (ORCID: https://orcid.org/0000-0002-4668-727X)
- Dominic Dwyer (ORCID: https://orcid.org/0000-0003-3949-5867)
- Sinéad Kelly
- René S. Kahn (ORCID: https://orcid.org/0000-0001-5909-8004)
- Tashrif Billah (ORCID: https://orcid.org/0000-0002-3611-6457)
- Ofer Pasternak (ORCID: https://orcid.org/0000-0002-7078-6446)
- Beier Yao (ORCID: https://orcid.org/0000-0002-4842-5206)
- Jessica Spark (ORCID: https://orcid.org/0000-0002-3229-298X)
- Barnaby Nelson (ORCID: https://orcid.org/0000-0002-6263-2332)
- Cheryl M. Corcoran (ORCID: https://orcid.org/0000-0002-8902-4353)
- Patrick D. McGorry (ORCID: https://orcid.org/0000-0002-3789-6168)
- Kristyn Chin
- Kathryn E. Lewandowski (ORCID: https://orcid.org/0000-0003-1477-6187)
- Paolo Fusar‐Poli (ORCID: https://orcid.org/0000-0003-3582-6788)
- Marek Kubicki (ORCID: https://orcid.org/0000-0002-3989-8212)
- Guillermo Cecchi (ORCID: https://orcid.org/0000-0003-1013-8348)
- Monica E. Calkins (ORCID: https://orcid.org/0000-0002-0546-0263)
- Michael Coleman (ORCID: https://orcid.org/0000-0002-1910-7145)
- Scott W. Woods (ORCID: https://orcid.org/0000-0002-3103-5228)
- Justin T. Baker (ORCID: https://orcid.org/0000-0002-6629-2195)
- Omar John (ORCID: https://orcid.org/0009-0008-3745-7270)
- Martha E. Shenton (ORCID: https://orcid.org/0000-0003-4235-7879)
- Grace R. Jacobs (ORCID: https://orcid.org/0000-0001-9961-6507)
- Abraham Reichenberg (ORCID: https://orcid.org/0000-0003-2729-8575)
- Andrew Thompson (ORCID: https://orcid.org/0000-0001-9269-8634)
- Brandon Staglin (ORCID: https://orcid.org/0000-0001-6409-6062)
- Vijay Anand Mittal (ORCID: https://orcid.org/0000-0001-9017-5119)
- Inge Winter-van Rossum
- Ameneh Asgari-Targhi (ORCID: https://orcid.org/0000-0002-1971-3962)
- Tina Kapur (ORCID: https://orcid.org/0000-0003-3646-9508)
- Elana Kotler (ORCID: https://orcid.org/0009-0004-5840-4443)
- Simone Veale
- Lisa Brown
- S. Sánchez García
Institutions
- Northwestern University (US)
- Brigham and Women's Hospital (US)
- ActionAid (US)
- Northwell Health (US)
- Feinstein Institute for Medical Research (US)
- Harvard University (US)
- University of California, Los Angeles (US)
- Douglas College (CA)
- University of California, San Francisco (US)
- King's College London (GB)
- University of Pavia (IT)
- University of Michigan (US)
- McLean Hospital (US)
- Instituto de Salud Carlos III (ES)
- Hospital General Universitario Gregorio Marañón (ES)
- National Alliance on Mental Illness (US)
- Yale University (US)
- Massachusetts General Hospital (US)
- Centro de Investigación Biomédica en Red de Salud Mental (ES)
- Orygen Youth Health (AU)
- Donald & Barbara Zucker School of Medicine at Hofstra/Northwell (US)
- Orygen (AU)
- One Mind (US)
- San Francisco VA Health Care System (US)
- Connecticut Mental Health Center (US)
- National Institute of Mental Health (US)
- McGill University (CA)
- University of Pennsylvania (US)
- École de Technologie Supérieure (CA)
- Icahn School of Medicine at Mount Sinai (US)
Publication Details
- Journal
- Schizophrenia
- Published
- 2025-04-07
- DOI
- https://doi.org/10.1038/s41537-025-00572-7
- Citations
- 3
- Primary Topic
- Mental Health and Psychiatry
- Type
- article
- Field-Weighted Citation Impact
- 51.80
Funders
- Wellcome
- National Institutes of Health
- National Institute of Mental Health