Adapted from an article by Niharika Maggo, Lived Experience Expert Advisor at Wellcome. Read the original article here.

Why Real-World Experience Matters

Research in mental health becomes most meaningful when it’s shaped by people who’ve lived through mental health challenges themselves. Their insights bring practical understanding and empathy that traditional research approaches sometimes miss.

As Niharika Maggo notes, research that draws only on academic expertise “risks missing the opportunity to develop something that has real world impact.” Including lived experience from the start leads to more grounded and useful outcomes for the people research is meant to serve.

Wellcome’s Lived Experience Innovation Fund

To help make this approach routine, Wellcome has launched the Lived Experience Innovation Fund, which supports projects designed to embed lived experience in every stage of research.

The Fund focuses on three priorities:

• Integrating lived experience into basic science, such as neuroscience and genetics.
• Building capacity in low- and middle-income countries, where opportunities for engagement are still developing.
• Developing leadership among lived experience experts, ensuring they have the tools and confidence to co-lead research.

Through targeted funding and training, these initiatives are helping make lived experience a core element of mental health research rather than an optional addition.

From Consultation to Co-Leadership

Traditionally, lived experience input has been limited to one-off consultations. Maggo argues for a deeper model where people with lived experience co-design studies, influence strategy, and share responsibility for outcomes.

A project led by aves Mental Health (formerly the Global Mental Health Peer Network) embodies this shift. It is developing an open-access training course to help researchers and lived experience experts collaborate effectively and equitably.

Expanding Global Participation

In many regions, especially low- and middle-income countries, there are barriers to meaningful engagement — from lack of training to limited infrastructure. To help overcome these, Wellcome is supporting Sangath, an Indian mental health organisation creating a national network of young people with lived experience to participate in research and decision-making.

This model aims to strengthen capacity locally and provide a blueprint that other countries can adapt.

Bridging the Gap Between Science and Human Experience

Basic science has often been seen as separate from lived experience. Yet, as Maggo points out, making discoveries that matter in people’s lives means grounding research in human realities from the outset.

The Innovation Fund is helping researchers explore how first-hand experiences can inform even highly technical fields, creating findings that are both scientifically sound and socially relevant.

Learning, Adapting, and Building Together

Wellcome continues to refine its approach by embedding lived experience in internal teams and working closely with advisors and partners worldwide. Maggo describes the process as one of “learning as we go”, underscoring that meaningful change depends on shared effort and experimentation.

A Future Where Lived Experience Is Expected

Asked about her hopes for the future, Maggo offered a simple but powerful vision: lived experience in mental health research should become “standard, basic, and boring.”

That’s the ultimate goal — when collaboration between researchers and people with lived experience is so embedded that it’s simply the norm.