Lived experience in mental health research

Lived experience is the unique form of knowledge, insight and expertise that comes from experiencing mental health challenges. 

When we refer to ‘people with lived experience’ or ‘lived experience experts’, we are referring to people who identify as having experienced anxiety, depression and/or psychosis, either now or in the past. Lived experience experts do not need to have been diagnosed by professionals or have accessed formal mental health services, and we recognise it may not always be safe or possible for them to do so. 

There are many reasons why including people with lived experience in mental health research is important. These include, but are not limited to: 

• capturing knowledge and experience that has been historically excluded 
• contextualising research in real life  
• identifying and prioritising new areas to explore  
• strengthening and increasing trust in research and outputs  
• increasing potential applicability and relevance in the real world 
• improving the likelihood of uptake of interventions
• improving the diversity in research 

We expect lived experience to be central to most research projects funded by our Mental Health programme. This helps to ensure that any resulting interventions align with the needs and priorities of the people who will use them. 

For your research project, this collaboration may take various forms, whether in setting research priorities, informing governance or leading studies.

There is a long history of collaboration with lived experience experts in mental health science. Many researchers now use well-established methods and models in their work, and there has been significant development in these practices over recent years. 

However, there are still challenges to overcome. 

In some areas of mental health science, we still don’t know the best ways to involve lived experience expertise. The capacity for this collaboration is also limited in many lower-resource settings. And lived experience leadership remains under-resourced and under-valued. 

That’s why, alongside our own research funding, we’re working to build a more positive and enabling research environment that promotes lived experience expertise. We believe it should be an essential part of mental health science – informing research priorities, how research is conducted and how it is communicated. 

Achieving this will mean more nuanced debates, new ideas and ultimately interventions that are more suitable to the people who need them. It will bring us closer to a world in which no one is held back by mental health problems.