Celebrating lived experience involvement in mental health research

This Research Appreciation Day (5 July 2026), we are celebrating a study highlighting the vital contribution of people with lived experience to mental health research.

The study, How Lived Experience Advisory Groups Contribute to the Design and Conduct of Mental Health Research, examined eight years of feedback, spanning 233 studies, from the NIHR BRC: Maudsley’s Service User Advisory Group and the Young Persons’ Mental Health Advisory Group to explore which issues group members prioritise when reviewing research. It was led by Jo Evans, a lived experience researcher and BRC PhD Student, in collaboration with a patient and public involvement group.

Significant benefits to including advisory group members

It found that members helped researchers create studies that are more inclusive, accessible and relevant to the people they aim to support. They consistently encouraged clearer communication, greater diversity, improved support for participants and stronger attention to privacy and data security. Notably, contributors also challenged researchers to reflect on issues such as stigma, power imbalances and the personal impact of participating in research. They emphasised the importance of treating participants with empathy, respect and transparency throughout the research journey.

It’s really important to get PPI throughout as much of the study as possible so that you can resolve any issues/obstacles as they arise. – Service User Advisory Group member

The study concluded that PPI advisory groups provide a valuable opportunity for reflexivity between researchers and people with lived experience and place a greater emphasis on relational ethics within mental health research practice.