Written by Jo Brown
“How do we bring in lived experience?”
It’s a question I hear repeatedly, across research, funding, and practice. And it sounds like the right question, doesn’t it?
But what if it’s the wrong question?
What if, instead, we asked: How are we creating the conditions for people with lived experience to have real power, autonomy, and agency in research that affects them?
That shift, from simply ‘bringing in’ to creating conditions for shifting power and enabling meaningful collaboration, has shaped how I think about research and participation, and is central to the work we do at IVAR. But it is not straightforward. Even where there is genuine commitment to doing this well, the systems shaping research and funding often stand in the way, limiting participation to feel-good, tokenistic contributions rather than meaningful influence.
Peer research and power
Research can help us understand people’s lives more honestly and amplify the voices of those who have been ignored or silenced. At the same time, many people have good reason to be wary of institutions and systems. Research is not always a force for good; it can be extractive, damage-centred, and tied to services that stigmatise or exclude. This is why power must be addressed from the outset. Without that, research risks repeating the very dynamics it claims to challenge.
In my previous role at Groundswell, I saw first-hand the power of peer research (research led by people with experience of homelessness who design, conduct, and disseminate the research). Peer researchers were involved in various ways, from developing funding proposals to crafting research recommendations and holding decision-makers to account for their implementation.
We often collaborated with universities, working with academic partners who recognised the importance of doing research differently. But even with the best intentions, power frequently remained with funders or universities. Partners were constrained by institutional and systemic structures that required them to control the budget, comply with lengthy ethics processes, and be assessed by traditional metrics of success. Too often, people with lived experience were being parachuted in rather than shaping work from the ground up.
That imbalance raises essential questions for all of us in the sector (and especially for those whose roles involve embedding participation):
Who holds the power?
Who gets to decide when lived expertise or community partners are valuable?
I saw examples of what can happen when those dynamics shift. One academic partner secured additional funding before a project began, specifically to co-develop the funding bid with lived experience volunteers. That early investment created genuine choice and influence. It laid the foundations for a relationship and approach where both the community and the research benefited as a result.
But more often than not, partners brought in lived experience organisations and community members to support fieldwork – without giving them the chance to shape the approach and, importantly, influence what happened with the insights afterwards.
Research can help us understand people’s lives more honestly and amplify the voices of those who have been ignored or silenced. At the same time, many people have good reason to be wary of institutions and systems. Research is not always a force for good; it can be extractive, damage-centred, and tied to services that stigmatise or exclude. This is why power must be addressed from the outset. Without that, research risks repeating the very dynamics it claims to challenge.”
Participation without power: beyond labels and tick boxes
Over the past few years, lived experience has become a common feature of research and funding conversations. That’s a positive shift; one worth celebrating.
But there’s also a risk. Increasingly often, lived experience involvement is a tick-box exercise – a story to evidence authenticity, or a single name on a steering group or expert panel. Individuals are therefore labelled by others on the basis of their lived experience.
Labels can impact how people experience involvement in both positive and harmful ways. At Groundswell, our research with people working and volunteering in the homelessness sector found that lived experience roles open doors and create opportunities, but they can also bring tensions and perpetuate glass ceilings. Participants sometimes felt their professional skills were overlooked or that their authenticity was misread as unprofessional. They also described experiences where their stories were ‘put on display’ rather than shared on their own terms. As Darren McGarvey argues, even ‘positive’ labels can be reductive:
We’re seen as brave, noble, morally grounded. But the reality is often messier. Many of us are still healing. Many of us are driven as much by unresolved wounds as by strategic intent. And the very visibility that feels empowering at first can quickly become overwhelming.”
Labels can both help and hinder participation and progression, depending on how power, autonomy, and respect are embedded in practice. This research highlights a critical message: lived experience involvement is about reducing power imbalances, not just valuing stories. For lived expertise to be genuinely influential, we need to look beyond just representation. The real challenge is to create conditions where power is shared. Where people with lived experience influence priorities, shape decisions and have agency over how their insights are used.
Embracing complexity and moving towards an intentional practice
Meaningful participation is rarely simple.
There are contradictions, tensions, and structural barriers that make it challenging. When done well, participation can be empowering, turning personal experiences into benefits for others. When it’s done poorly, people can feel constrained or disconnected from their own stories. These challenges aren’t reasons to step back. On the contrary, they highlight why these conversations and explorations are so important.
At IVAR, we are exploring how to better involve people with lived experience in meaningful ways. This is a core focus of our Connecting Health Communities programme. When we bring together cross-sector partnerships to tackle health inequalities, we know that solutions can be effective only if they are informed by individuals and communities with lived experience of the issues we are exploring. For example, in Birmingham, this means ensuring sex workers and the charities that work with them are determining how and when they share their experiences to identify barriers within the system and hold decision makers to account. In Dudley, this meant running workshops in Schools to explore the barriers to healthier eating amongst children and develop solutions together.
As we work across different sectors and locations, we continually ask:
Why are we doing this work? How can we be intentional about our approach and avoid making pre-determined assumptions about how the work will play out?
How do we maximise our influence, resources, and relationships to shift power in meaningful ways? And how do we ensure we are creating the space, time, and trust this work takes?
How do we create the conditions for autonomy, agency, and respect? – even when it disrupts assumptions or planned approaches – so that people are genuinely able to contribute on their own terms.
By asking these questions, we hope to develop and share approaches that genuinely shift power and respect people’s autonomy.
This is very much a learning journey. We are currently developing clear principles to guide our approach to lived experience involvement consistently across projects, and we would love to hear from others exploring their approaches. By leaning into these tensions and learning from experiences across sectors, we can build up – rather than just bring in lived experience. We can build practices that are intentional, equitable, and genuinely empowering.
Blog adapted from a talk given at Co-Pro Futures Inquiry panel.