Coproduction Without Youth? Closing the Participation Gap in Digital Mental Health Research

Clinical Snapshot

Key Findings

• Effect Size: Not applicable — conceptual/position paper; no quantitative effect sizes reported

• Primary Outcome: Identification of three interrelated drivers of the participation gap in digital youth mental health research: (1) conceptual and linguistic fragmentation across disciplines regarding what 'participation' means; (2) uneven distribution of youth involvement across the research life cycle, concentrated in early ideation or usability testing but absent from upstream decision-making and downstream evaluation; (3) institutional barriers including ethics review processes, consent requirements, funding constraints, and adult-centric research norms

• Nnt Or Sensitivity: Not applicable — normative recommendations proposed include: 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 youth-informed governance mechanisms for GenAI systems

Clinical Application

The recommendations are feasible in principle but require systemic change: dedicated funding streams, revised ethics frameworks, and institutional commitment to youth partnership infrastructure. Individual clinicians have limited capacity to implement these changes unilaterally; the primary audience is researchers, funders, ethics committees, and health technology developers. The minimum expectations proposed (e.g., life cycle mapping, reporting of youth influence) are low-cost and immediately actionable for research teams. Highly relevant to the Australian context. Australia has a substantial digital youth mental health infrastructure including headspace, ReachOut, Beyond Blue, and the Black Dog Institute's digital programs. The TGA regulates Software as a Medical Device (SaMD) under the Therapeutic Goods Act 1989, and the rapid emergence of GenAI-enabled mental health tools (e.g., chatbot-based support) raises urgent regulatory and co-design questions. The RACGP's Standards for General Practices and the National Mental Health and Suicide Prevention Plan both endorse consumer and carer involvement, but youth-specific coproduction standards for digital tools are underdeveloped. The paper's recommendations align with the Australian Government's National Digital Health Strategy 2023–2028, which emphasises consumer-centred design. NHMRC funding frameworks could incorporate the proposed minimum participation standards. The paper's emphasis on proportional ethics frameworks is particularly relevant given HREC processes that can create disproportionate barriers to involving minors in low-risk co-design research. Children and adolescents accessing or being referred to digital mental health tools, including GenAI-enabled applications; clinicians, researchers, and health service designers involved in developing or commissioning digital youth mental health interventions

Abstract

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, resourced, and accountable component of research, design, and governance. In the context of rapidly evolving digital and GenAI technologies, failure to do so risks producing interventions that are scalable but not safe, credible, or responsive to the needs of young people.

References

1. 1.Blease, C., Tibbs, M., Balaskas, A., Liverpool, S., Hagström, J., & Fitzgerald, A. (2026). Coproduction without youth? Closing the participation gap in digital mental health research. JMIR Mental Health. https://doi.org/10.2196/91739