Announcing a New Lancet Psychiatry Commission on Lived Experience in Mental Health Research: Come and join us

The Commission comes out of decades of lived experience activism around the world. Those of us with lived experience know that integrating lived experience in mental health research is essential for it to be meaningful and impactful.​ And the people who fund, conduct and publish research are recognising this too. In the UK, most health research funders ask research teams to demonstrate how lived experience has influenced the application, and how it is being integrated into the research design. From this, we have seen standards of involvement become established and, in many ways, lived experience involvement and leadership in research is flourishing. But, while there is much in this to celebrate, there are also many complexities and challenges, and much variation in practice.

Lived experience is integral to mental health research

One significant concern is that lived experience involvement can be confined to a small part of the research with limited impact. In the UK, this has supported the narrative that involvement is being achieved, while the old systems of power still remain in place. This means that academic institutions can secure more funding by ‘doing inclusion’ but the money remains held within the institution, rather than being redistributed to people with lived experience to lead or co-lead the work. It also means that institutions can use (tokenistic) involvement to validate their work, sometimes even legitimising harmful practices. Overall, this means that “the same academic systems that once benefitted from exclusion… now benefit from inclusion instead” (Fischer et al, 2024). Health, education and social systems continue to exclude or exploit people, many hierarchies of power remain unchallenged, and much knowledge is still produced within the same old frameworks to the same old agendas.

So, we felt it was time to pause and consider what role lived experience should play, both in and out of research institutions through involvement, but also through leadership and community action. We want to explore the different forms of lived experience involvement and leadership around the world, and consider what we can learn from one another. In doing this, we want to support a shift from tokenistic, ambivalent and marginal involvement to a greater shared understanding of why the involvement and leadership of people with lived experience leads to better science and increased epistemic and social justice.

That’s why survivor-led organisation Traumascapes, the survivor-controlled research group the Service User Research Enterprise (SURE) and the ESRC Centre for Society and Mental Health (CSMH) at King’s College London are teaming up to co-lead this Lancet Psychiatry Commission on Lived Experience in Mental Health Research.

What will this Commission do?

The Lancet Psychiatry Commissions bring together experts from across the world to combine knowledge on the most pressing issues in science, medicine and global health and provide recommendations that are intended to change health policy or improve research. The creation of the Lived Experience in Mental Health Research Commission will span continents, taking around two years to accomplish.

The Commission will consider a range of topics from different perspectives around the world, such as the disparate histories of lived experience in mental health research, and knowledge on contemporary issues, including knowledge gaps. We do not want to produce a one-tone mono-narrative that smooths out or shies away from thorny issues. Instead, we hope to create space to explore the differences and debates among us. To do this, we will draw on values produced with the Commission’s Lived Experience Advisory Board, which we will review with Commissioners (‘Commissioner’ is The Lancet Psychiatry’s name for the people who co-author Commissions). These values will guide our work on the Commission so that we can ensure each person’s needs are considered, everyone feels valued and heard and we can collectively support a culture of kindness and compassion, and of learning and unlearning. You can find out about our evolving values here.

A survivor-artist will capture key moments in our work, supporting us to consider, reflect and review our work together, and document our processes. Artworks – such as visual art, music, dance, film, poetry and so on – from a range of people with lived experience will also be published alongside the final Commission to capture what can’t be conveyed through words.

How can you get involved?

We are now recruiting 12 Commissioners to co-author the Commission. Commissioners will be based around the Globe, and together will have a breadth and depth of knowledge, experiences and perspectives. If you are interested in learning more about the Commissioner role, including how to apply, please click here to read the role description and download an application form.

We can’t do any of this without our community. So, if you have something to say on these topics, please take a look at our website to see whether joining us might be right for you. Your voice could help nourish the culture of mutual care and shared learning we hope to foster together and, collectively, we might just contribute to paving the way toward better mental health research.