'Not just accepted, but expected’: lived experience should be the norm in mental health research

Lived experience in mental health research is the knowledge, insight and expertise that comes from having first-hand experience of mental health challenges, either now or in the past. It’s an increasingly valued approach – and with good reason.  

If we rely on academic expertise without any lived experience insight, we risk missing the opportunity to develop something that has real world impact. When people with lived experience are involved – whether as leads or co-leads, working group members or strategic advisors – research becomes more grounded, more inclusive and more useful.

This is the only way forward for mental health research.

In recent years, we’ve seen more researchers embed lived experience meaningfully in their work. We’re starting to see this expertise shape research from the very outset, and throughout projects. We’ve also made lived experience engagement mandatory in some of our funding calls. And internally at Wellcome, a global team of lived experience advisors now shape everything from strategy to funding and decision-making.

Despite this momentum, there are challenges still holding the field back. Wellcome’s Lived Experience Innovation Fund is supporting projects to help address some of them.

Too often, lived experience involvement is limited to advisory groups or one-off consultations. While these can be valuable, they often don’t go far enough. There’s a blurry line between meaningful engagement and tokenism – and the mental health research community need to be brave enough to cross it.

True engagement means lived experience experts are involved at multiple stages of the project. They may lead, co-design or co-lead the research, own certain workstreams, or inform and shape governance, strategy, delivery and decision-making. It also means fair compensation, equitable partnerships and shared ownership of research outcomes.

One of the Lived Experience Innovation Fund projects tackling this is aves Mental Health, formerly known as the Global Mental Health Peer Network. They are creating an open-access online training course for lived experience engagement. It’s designed for both researchers and lived experience experts, helping to build skills, confidence and community. By investing in leadership development, aves Mental Health is ensuring lived experience becomes a driving force for change, not a side note.

In many low- and middle-income countries, lived experience engagement is still emerging. Researchers may lack the resources, networks or training to embed it meaningfully. And lived experience experts may not have access to the platforms or support they need to contribute.

That’s why building capacity is so important. And why I was especially excited about the Innovation Fund’s partnership with Sangath. By establishing a national collaborative network, their project focuses on embedding young people with lived experience in mental health research across India.

This work could eventually benefit all research in the region, and help inform similar models in other low- and middle-income countries. It’s about making lived experience practical, accessible and locally relevant.

Basic science (for example, genetics or neuroscience) has traditionally operated at a distance from lived experience. Researchers often ask why lived experience is needed when they have established animal or computer models. But if we want our findings to be applicable to real people, we need to start with real lives.

The Innovation Fund also hopes to help bridge this gap. A researcher once told us, “we don’t know why we weren’t doing this before.” That’s the kind of shift we need: where lived experience becomes not just accepted, but expected in these fields.

Wellcome has played a leading role in pushing for lived experience engagement through funding, forums, policy and partnerships. But we’re also clear that we don’t have all the answers. This is a developing field, and we’re learning as we go.

That’s why we’ve built lived experience into our internal teams, created space for experimentation through the Innovation Fund, and continue to work closely with advisors and partners to refine our approach. We’re also exploring how to foster more collaboration across organisations globally, because progress will be faster and stronger if we build this field together.

A colleague recently asked what I hope for the future of lived experience in research, I said: “It should be standard, basic and boring.” That might sound strange, but it’s exactly what we need. Lived experience should become the norm.

I want to see a research field that’s collaborative, inclusive and grounded in reality. One where lived experience experts are leading alongside academics. One where mental health research reflects the complexity, diversity and humanity of the people it’s meant to serve.

We’re not there yet. But with the right tools, funding and mindset, we can get there. Lived experience will no longer be the exception, it will be the expectation. And when that happens, I’ll be proud to say: job done.