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Coproduction Without Youth?: Closing the Participation Gap in Digital Mental Health Research
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Participatory eHealth and Health Data Research Group. Newark Beth Israel Med Ctr, Dept Psychiat, Digital Psychiat, Boston, MA USA..ORCID iD: 0000-0002-0205-1165
Univ York, Psychol Educ Res Ctr, York, England..
Univ Coll Dublin, Sch Comp Sci, Dublin, Leinster, Ireland..ORCID iD: 0000-0003-3720-4587
Edge Hill Univ, Fac Hlth Social Care & Med, Ormskirk, England..ORCID iD: 0000-0001-6419-8552
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2026 (English)In: JMIR Mental Health, E-ISSN 2368-7959, Vol. 13, article id e91739Article in journal (Refereed) Published
Abstract [en]

Young people are among the most intensive users of digital and generative artificial intelligence (GenAI)-enabled mental health tools, yet they remain underrepresented in the research and design processes that shape these technologies. Although participatory approaches such as co-design and patient and public involvement are widely endorsed as best practices, youth involvement in digital youth mental health (DYMH) research is often inconsistent, superficial, or limited to late-stage consultation. This participation gap risks producing interventions that are misaligned with young people's lived experiences, priorities, and vulnerabilities, particularly in the context of rapidly evolving and scalable GenAI systems. This Viewpoint aims to reexamine the underlying drivers of the participation gap in DYMH research; clarify how participation is conceptualized and implemented across disciplines; and propose concrete, actionable recommendations to support more meaningful and consistent youth involvement across the research life cycle. We draw on interdisciplinary literature from digital mental health, human-computer interaction, child-computer interaction, and health research policy. Our Viewpoint integrates conceptual frameworks (eg, Lundy's model of participation), existing reviews of co-design practices, and emerging evidence on GenAI in mental health. We adopt a life cycle-oriented perspective to examine how youth participation is distributed across stages of research and development, including problem formulation, design, implementation, and evaluation. We identify 3 interrelated drivers of the participation gap. First, conceptual and linguistic fragmentation obscures what participation entails in practice, with terms such as co-design, participatory design, user-centered design, and patient and public involvement used inconsistently across disciplines. Second, youth involvement is uneven across the research life cycle, with participation often concentrated in early ideation or usability testing but largely absent from upstream decision-making and downstream evaluation. Third, institutional barriers-including ethics review processes, consent requirements, funding constraints, and adult-centric research norms-systematically limit meaningful youth partnership. These challenges are amplified in the context of GenAI, where opaque "black box" systems, simulated therapeutic interactions, and rapid deployment cycles introduce distinct risks if youth perspectives are not integrated. We propose a set of minimum expectations to address these gaps, including explicit specification of participatory models, life cycle mapping of youth involvement, reporting of youth influence on decisions, dedicated funding for participation, proportional ethics frameworks, and mechanisms for youth-informed governance of GenAI systems. Closing the participation gap in DYMH research is both an ethical imperative and a practical necessity. Moving beyond aspirational commitments requires embedding youth participation as a standard, technologies, failure to do so risks producing interventions that are scalable but not safe, credible, or responsive to the needs of young people.

Place, publisher, year, edition, pages
JMIR Publications, 2026. Vol. 13, article id e91739
Keywords [en]
digital mental health, youth mental health, co-design, participatory research, patient and public involvement, generative artificial intelligence, ethics, artificial intelligence, AI
National Category
Human Computer Interaction Psychology
Identifiers
URN: urn:nbn:se:uu:diva-594798DOI: 10.2196/91739ISI: 001820550400001PubMedID: 42342243Scopus ID: 2-s2.0-105045177598OAI: oai:DiVA.org:uu-594798DiVA, id: diva2:2089485
Available from: 2026-08-03 Created: 2026-08-03 Last updated: 2026-08-03Bibliographically approved

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Blease, CharlotteHagström, Josefin

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