Youth engagement in digital public health: from visibility to influence, accountability, and reach

Adolescents and young adults are among the age groups most exposed to digital technologies worldwide, and the tools they encounter—health apps, algorithmically curated health information, AI chatbots, and digital mental-health services—now shape the health information, recommendations, and services available to them. Yet these technologies remain poorly governed and poorly evaluated, and the young people with the highest stakes hold the least structural power over how the tools are designed, deployed, and held to account. That is the stark diagnosis of a new perspective article published in Frontiers in Public Health, in which a team of researchers from the Digital Transformations for Health Laboratory at the University of Geneva and partner institutions argues that the gap between participatory rhetoric and governance reality in digital public health is largely structural—and that the mechanisms now in place tend to make youth engagement visible without converting it into influence over what is actually decided.

The risks these tools carry are not evenly spread. Digital mental-health tools are often promoted for low-resource settings where other routes to care are scarce, but a systematic overview of 18 reviews found that the underlying studies came mostly from high-income countries and that none reported participants’ socioeconomic background, leaving little evidence on how such tools perform elsewhere. Data handling is a further problem: when researchers intercepted the traffic of 36 top-ranked apps for depression and smoking cessation, 33 transmitted user data to third parties, often without disclosing it, and detecting this depended on users’ own privacy literacy. A young person who uses a free app because no service is nearby has little way of knowing how well it works or where their data goes. These findings give the governance question its urgency: the populations most exposed to poorly governed tools are often the least represented when the rules are written.

At the same time, calls for meaningful youth engagement have multiplied. The Lancet and Financial Times Commission on Governing Health Futures 2030 took an explicit position that youth and youth organizations should be embedded within institutions of power, that structures for meaningful participation should be built, and that the health and wellbeing issues affecting young people should be defined by young people themselves. Multilateral bodies have since created mechanisms of this kind, among them the WHO Youth Council, youth delegate schemes at the World Health Assembly, and youth advisory councils across UN agencies. The vocabulary of co-design, co-production, and youth-led innovation now circulates across research, policy, and funding. Yet the WHO Global Strategy on Digital Health 2020–2025, which calls for person-centered, inclusive governance, does not mention young people anywhere in the document.

This shift has produced a visible institutional infrastructure. Young people are increasingly invited into design workshops, appointed to advisory boards, represented at high-level meetings, and cited in reports as evidence of inclusive practice. Under the right conditions, their involvement has measurable value: an umbrella review of 99 reviews found positive effects on young people themselves and on the relevance and conduct of research. But the same literature reveals a paradox. Fewer than 1% of studies on child and adolescent health report any adolescent involvement, and where participation occurs it often remains concentrated in design and co-creation, while the literature continues to call for more sustained engagement through implementation and evaluation. Participation has widened as a practice while the decision-making structures around it have changed far less.

The Geneva team traces this pattern through three tensions, each a place where participatory language and governance practice come apart. The first is visibility without influence. Advisory boards, delegations, and forums generate participation that can be documented and readily cited by host organizations, but they rarely confer the formal decision rights that would turn presence into power. A 2026 scoping review of youth advisory boards since the UN Convention on the Rights of the Child finds that they engage young people more often in training and data collection than in setting research direction or making decisions. An invitation to co-create and a seat at the governance table are described in the same institutional language, even though the two differ fundamentally in power. Tokenistic participation is not merely ineffective; it can harm the young people involved and erode their trust.

The second tension is consultation without accountability. Participatory methods have entered the mainstream of digital and public health, and consulting young people is in many settings now a condition of funding rather than an aspiration. But the near-universal adoption of participatory language has not been matched by any obligation on institutions to respond. Where no institution must act on, acknowledge, or explain its treatment of youth input, and no record is kept of whether that input changed anything, the contribution stays decorative—not through bad faith, but because no rule requires more. A process can satisfy every participation guideline and still change nothing about what the institution does. Accountability, the authors argue, is that missing duty: an institution required to justify how it used youth input differs from one that merely takes it under advisement, because the requirement can turn a one-off event into a relationship that can be traced over time.

Mechanisms of this kind already exist. In health systems, “you said, we did” or “closing the loop” practices build a response obligation into a required feedback step. At the level of global commitments, Resolution WHA77.2—the first World Health Assembly resolution devoted to social participation—calls on Member States to implement, strengthen, and sustain regular and meaningful social participation in health-related decision-making, and its companion handbook translates this into guidance on linking participation to decision-making and on the legal frameworks that sustain it. A comparable duty could be made explicit for adolescents and young adults in digital health. The authors also point to the second Lancet Commission on adolescent health and wellbeing, which appointed 10 youth commissioners who co-led workstreams, were remunerated for their contributions, and are named among the report’s authors—an illustration that power in these settings is not zero-sum, and that young people can gain a say over specific decisions without other participants losing theirs.

The third tension is global rhetoric with local exclusion. Calls for youth leadership are loudest in global institutional spaces, while many of the young people most exposed to poorly governed tools live in the contexts with least access to those spaces. Among 194 WHO Member States, the number of youth delegates at the World Health Assembly rose from 9 in 2022 to 13 in 2023, but 11 of the 13 countries represented were classified as high-income by the World Bank. Funding constraints, unequal North–South relations, displacement, poverty, and poor internet and mobile connectivity keep a wider range of young people off the global stage. The imbalance is particularly consequential in digital health, because the harms of poorly governed tools—misinformation, algorithmic exclusion, online abuse, and unsafe data practices—can fall disproportionately on the populations absent when the rules are written. Reviewing national digital health strategies across 10 African countries with young populations, researchers found that the strategies overlooked young people’s specific needs and risks, and called for inclusive processes to protect their say in decisions that affect them.

Institutions commonly justify limited youth influence by raising repeated concerns: that young people lack the technical expertise governance needs, that formal decision rights raise financial and legal liability, and that no individual can represent a group as broad as “youth.” None of these is baseless—limited training, unequal power relations, and the pull toward tokenism are documented barriers—but left unexamined, each concern justifies itself. Where expertise is treated as the price of entry rather than something built through participation, young people stay permanently junior. Where liability keeps influence at arm’s length while visibility is still encouraged, the outcome is the very mix that breeds tokenism. Closing the gap, the authors argue, is a question of reach: governance capacity built where the consequences are felt. One delegate flown to a global forum cannot stand in for the world’s youth, and it is a design error to expect them to. The United Nations Population Fund has invested in youth-led networks such as AfriYAN and established national Youth Advisory Councils, routing influence through local and national structures rather than the global stage.

How participation is designed also affects how much influence it carries. A scoping review of 38 health studies involving marginalized children and young people found that the most common rationale for involving them—making an output more useful or acceptable—was associated with the lowest average participation, while empowerment of a marginalized group was associated with the highest. Participation was higher where studies combined several modes of contribution, such as drawing, photography, video, and writing, instead of relying on verbal accounts that favor the most articulate participants. The Committee on the Rights of the Child presumes capacity: it is not up to the child to prove it, and age alone cannot determine the weight a view receives. Timing gives the argument practical weight too. Decision WHA78, adopted in May 2025, extended the WHO Global Strategy on Digital Health to 2027, and a successor strategy for 2028–2033 is now being drafted. Whether that strategy gives young people real influence, requires institutions to answer them, and extends both to the settings that need them most—or reproduces the more visible but shallower arrangements already in place—is a question youth-engagement scholarship is well placed to inform. The strategy now in force does not mention young people at all; whether the next one gives them a position is a reasonable test of how much has changed.

Subject of Research: Youth engagement in digital public health: from visibility to influence, accountability, and reach

Article Title: Youth engagement in digital public health: from visibility to influence, accountability, and reach

Article References: Pascon Filho, A., Goeschl, S., Dietram, P., Kuhrn, M. M., Thapaliya, S., & Bytyqi, A. (2026). Youth engagement in digital public health: from visibility to influence, accountability, and reach. Frontiers in Public Health, 14, Article 1993809. https://doi.org/10.3389/fpubh.2026.1993809

Image Credits: AI Generated

DOI: 10.3389/fpubh.2026.1993809

Keywords: Youth, engagement, digital, public, health, visibility, influence, accountability, reach, scientific research