Who gets to define minoritised experience in mental health research?
At a participatory action research workshop I participated in, white organisers had already defined the problem and the solution for an issue that affects everyone, but particularly people of the Global South. All participants had some or all of their ethnic origins in the Global South. The invitation assumed we shared the mission and asked us to respond emotionally through creative work. But I wanted us to be involved from the outset, helping to define the problem and consider possible responses – and I did not feel invited to question the assumptions shaping the organisers’ approach.
That distinction has stayed with me as a contributor to mental health research with mixed Global South heritage. I have a voice. What I want from co-production is a say in what happens, beginning with how we decide what needs to change.
What does the research system make possible?
Co-production has a specific promise. Guidance from the National Institute for Health and Care Research (NIHR) describes researchers, practitioners and the public sharing power throughout a project, including ownership of key decisions and the knowledge produced.
Yet the way research is funded can narrow that promise. NIHR’s Kent, Surrey and Sussex co-production guide acknowledges that contributors’ roles may be determined in advance when involvement plans and budgets are needed to secure funding. By the time someone is invited, the scope for influence may already be limited.
A 2024 review of nine papers on power in mental-health co-production found that researchers and contributors were working within hierarchies that made sharing power difficult. Its authors argued that meaningful change also needed to come from funders, universities and NHS providers. A welcoming workshop cannot, on its own, resolve decisions made elsewhere.
If people can comment on a proposed intervention but are not encouraged to question how distress is understood or explore the assumptions behind the research question, other perspectives and forms of support may never be considered.
Whose understanding counts?
Creative work can express things that ordinary conversation cannot. In that first workshop, though, the invitation never included helping to define the problem or consider possible solutions. Our feelings were welcome within a mission whose premises we were expected to accept. I wanted our understanding to help shape the mission itself.
The racial dynamic mattered in work concerned with racial justice. Survivor researchers Diana Rose and Jayasree Kalathil have questioned whether co-production can share power while institutions retain control over whose knowledge counts. That power can remain difficult to question even when everyone wants the work to help.
In A Ladder of Citizen Participation (1969), Sherry Arnstein described women requesting play areas for their children because a modest request seemed achievable. Would they have chosen differently, she asked, had they known free prepaid health insurance was an option? What people ask for depends partly on what they understand to be possible.
For people of the Global South, there can also be pressure not to seem angry, frustrated or ungrateful towards white researchers who seem to be trying to help. We may worry about making the room uncomfortable by saying that their chosen approach might not benefit us. We can also feel pressure among ourselves, as people of the Global South, to agree about the right path forward for us. An invitation built on assumed agreement makes that harder: disagreement can feel like disrupting the conversation before we have had a chance to shape it.
Our words and images can lend a project the authority of lived experience. They do not automatically show agreement with its conclusions. I bring the time I have spent trying to understand my experiences, the questions they have left me with, and ideas about what might help someone else. I want that thinking to receive the same care as the experiences that made it possible.
What happens when we imagine support together?
A different experience showed me what this could look like. In co-design sessions for a trauma support programme for queer women and gender-diverse trauma survivors, we began with a completely blank slate. There was no existing course to approve. We could ask what support outside psychiatric services might look like and develop the answer together.
We talked about LGBTQ+ history, legal rights and the political context of queer lives. Support could include understanding the world we had to navigate. We could question assumptions about heterosexuality and conventional gender roles while the programme was still taking shape. Our lives helped determine what belonged in it.
I suggested in-person activities requiring different amounts of energy, so neurodivergent people could choose how to take part. The group welcomed the idea, and it went into the final design. Someone might have a way to participate because we had made room to consider different needs.
People of different ethnicities, ages and backgrounds were shaping the programme together. I could not represent everyone with my heritage, and nobody needed to. Our differences could become choices within the programme. We were learning what support could offer by allowing people to want different things from it.
How do we keep that possibility open?
Sharing power needs time and resources before research questions are settled, and must continue as findings are interpreted and support is evaluated. Contributors need a way to challenge how their experiences have been understood, with enough authority to change the account. Involvement should leave a visible record of what people influenced and what remains disputed.
There will be budgets, deadlines and ideas that cannot work. Explain those limits and let us think within them together. I do not expect every suggestion to be adopted. I want to understand decisions and know that disagreement will be considered without putting my place in the conversation at risk.
I return to my energy-level suggestion because I can follow it from a thought I offered, to a choice someone else may one day have. I wonder what possibilities we might have discovered in the earlier workshop if we had helped define the problem together. That is the hope I bring to co-production: being involved while those possibilities are still open.
About the author
Francesca is a writer and community organiser whose work explores power, belonging and whose knowledge counts. Drawing on experience of research involvement and community-led spaces, she writes about the difference between being invited to speak and having a real say in what happens next.