A recent brief from the Global Mental Health Action Network (GMHAN) on the future of the global health architecture argues that civil society, young people and people with lived experience are still too often treated as sources of information rather than as experts involved in shaping health systems. GMHAN calls for more consistent involvement in setting priorities, developing services and evaluating how they are delivered, rather than limiting participation to consultation at selected points in the process.
This reflects the approach set out in the World Health Organization's Framework for Meaningful Engagement of People Living with Noncommunicable Diseases, and Mental Health and Neurological Conditions. Published in 2023, the framework aims to move meaningful engagement from intention into practice by involving people with lived experience in the co-creation and improvement of policies, programmes and services (WHO, 2023).
The same discussion applies to digital mental health. Terms such as user-centred design, co-design and lived-experience involvement are now common in the development of digital interventions, but the level of participation behind those terms varies considerably.
From consultation to collaboration
Fisher et al. (2026) examined 29 studies involving people with lived experience in the design and development of digital mental health interventions. Most engagement took place through consultation, including activities such as focus groups, while involvement and collaboration were less common. Across the studies, lived-experience input contributed to changes in content, design and delivery, including adjustments to language, and was frequently associated by researchers with greater relevance, acceptability and inclusivity.
Why timing matters
Timing is an important part of this. Feedback on an existing prototype can improve an intervention, but it offers less scope to shape decisions made earlier in development. Fisher et al. describe lived-experience engagement as something that can contribute throughout the research lifecycle, beginning with planning and priority-setting rather than only once a product is ready to test. This closely reflects the GMHAN brief, which argues for participation in setting the agenda as well as responding to decisions that have already been made.
There is also a practical reason to involve lived experience earlier. Clinical knowledge, technical expertise and behavioural data each provide important information about a digital intervention, but they do not necessarily capture how it will be experienced in everyday use. People with lived experience may identify problems with language, assumptions about care pathways, accessibility or trust that are less visible from the development side. Fisher et al. found that these contributions resulted in changes to digital interventions rather than remaining limited to general feedback.
Quality over presence
The quality of participation matters as much as the stage at which it takes place. GMHAN highlights remuneration, adequate resourcing and safeguarding as conditions for meaningful engagement, particularly when people are asked to draw on personal experiences of distress or care. Fisher et al. also identify limited diversity among participants and the resources required to sustain engagement as recurring challenges in digital mental health research. A small advisory group can contribute valuable expertise, but it cannot automatically represent the experiences of everyone a service is intended to reach.
What this means for digital mental health
For digital mental health organisations, it becomes necessary to think about where the contribution of people with lived experience is most useful, how it is supported and how teams respond when that contribution challenges an existing assumption. Lived experience may be particularly relevant when defining the problem an intervention addresses, developing language and content, shaping safety procedures, selecting the right outcomes and reviewing how a service works after implementation.
This also suggests that digital interventions continue to change through new features, new evidence and new ways of being used, so the relationship with people with lived experience may also need to continue beyond initial design. Building this well requires organisations to create the time, resources and structures needed to work with lived-experience expertise throughout the life of an intervention.
The WHO framework and the recent GMHAN brief place meaningful engagement within a wider discussion about how health decisions are made. For digital mental health, the practical implication is similar: involving people with lived experience is most valuable when organisations are prepared not only to hear their perspective, but to incorporate that expertise into how products, services and research develop over time.
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