Why lived experience matters for mental health innovation
Time
In mental health, delays worsen outcomes. Every extra month waiting for diagnosis or treatment increases the burden on individuals and society. Startups face similar pressures: a short runway can mean the difference between life and death for a product. Even in academia, research is constrained by funding cycles.
Integrating lived experience may take more time at the beginning, but it prevents wasted effort later. Identifying issues early in the study or product design process can save significantly more time and resources than trying to fix problems later when mistrust or barriers arise.
Trust
Research is only as strong as the trust it earns. Without it, people will not participate in studies or adopt interventions, however effective they may seem on paper.
“The biggest difference lived experience input makes is around trust. In mental health, and particularly psychiatry, there’s a long history of people reacting to interventions with mistrust. When people with lived experience are involved, it shifts the field from being reactionary to being proactive, by designing things that are trustworthy from the start.” – Dhriti Sarkar, Lived Experience Expert Advisor, Wellcome Trust.
“Trust comes from learning by doing together. Some things will work, some will fail, so we need to build in pauses to reflect and adapt. Saying ‘we don’t know the best way, so let’s figure it out together’ creates shared ownership.” – Kate Martin, Head of Lived Experience, Wellcome Trust.
Lived experience doesn’t erase mistrust, but it surfaces concerns early and builds credibility by showing that decisions are being made with people, not just for them.
Accessibility
A tool that works in principle but is impractical to use will fail. Industry sometimes responds better to user needs, but many products have still flopped by ignoring what people actually want. The same applies to research where a flawless study design is useless if no one will take part.
“If you truly want to connect with your audience, you have to reach them emotionally, and that’s hard to do without direct input from people living the experience you’re trying to support… If you’re not involving people with lived experience early and often, you’re not just missing an ethical opportunity, you’re likely missing the mark.” – Dr Laura Beavin Yates, Chief Marketing Officer at Immersion Neuroscience.
By centring lived experience, accessibility issues can be identified before they become barriers, from unrealistic study demands to product features that don’t resonate with users.
New models for translational collaboration
If time, trust, and accessibility are the benchmarks of good mental health research, then the structures we use to deliver it need to change. However, many of our current models overlook the voices and connections that make collaboration effective.
The Zinc VC Behavioural Research Report highlights this gap: scientists in startups are doing important work, but often in isolation. Knowledge gets stuck inside individual organisations, commercial sensitivities make it hard to share, and there is no central community bringing people together.
More flexible, cross-disciplinary networks are one potential solution. By creating spaces where ideas and evidence flow more freely, and connecting researchers, clinicians, industry innovators, creatives, community organisations, and experts by experience, we can build collective knowledge about what actually works.
At Sci-translate, our community is one example. We bring together scientists, clinicians, creatives, and industry specialists across mental health and behavioural science to share lessons across traditional boundaries. The mission is simple: to ensure that research and interventions are grounded in the real-world priorities of the people they are meant to serve, with lived experience being a core part of the process.
These kinds of networks are not yet the norm. But if the UK’s life sciences ambitions are to succeed, particularly in mental health, they could form the foundation of a translational infrastructure that is more agile, inclusive, and genuinely impactful.
Looking ahead: towards a stronger translational infrastructure
For the UK’s life sciences ambitions to succeed, growth must be more than financial. It must mean ethical innovation, meaningful public involvement, and collaboration across sectors.
Lived experience plays a vital role in this shift. It grounds research in human priorities, builds trust in innovation, and ensures that accessibility is designed in from the start. But it can’t be left to chance; it needs to be built into the way innovation happens.
We must prioritise models of collaboration that put lived experience at the centre and break down siloes between academia, industry, and communities. Only then will we create solutions that are credible, accessible, and truly impactful.
