Beyond the story: what does it mean to learn from lived experience?

I have been working with someone who has spent more than 25 years in prisons and secure mental health services. He has an extraordinary story, but he isn’t particularly interested in telling it. He wants to change practice.

It has made me reflect on something I’ve encountered repeatedly in my work with organisations. We have become much better at inviting people to share their lived experience. But are we equally good at recognising and working with the knowledge it can produce? 

Beyond the story 

Stories are powerful. They make abstract problems human in a way that data often cannot. 

In my diversity and inclusion work, I have heard colleagues describing their experience of racism, homophobia, disability or exclusion that has made something visible that no employee survey could convey. 

But sharing lived experience can also mean revisiting painful events, making sense of them for others and sometimes being expected to speak for people whose experiences may be very different. Recent literature describes both the emotional labour this can involve (Mah, Dobson and Thomson, 2025) and the risk of “extracted testimony”, where people are invited to contribute because of what they have experienced but have limited control over how their knowledge is used (Bortolotti, 2026). 

There is considerable work on how to involve people with lived experience well, including questions of tokenism, power and meaningful participation (Hopkins et al., 2024). In many public services, involving patients and service users is also increasingly an expectation of good practice. But inviting lived experience in is one thing. Knowing how to work with it is another. 

From experience to expertise

Part of the problem may be language. We tend to use lived experience, experiential knowledge and lived-expertise almost interchangeably. They aren’t quite the same thing.

Lived experience is what someone has actually lived through and encountered from their particular position in the world. 

Experiential knowledge is what they have come to know through that experience: the understanding, insights and patterns that emerge through living it and reflecting on it. 

Lived experience can generate experiential knowledge. That knowledge may, through reflection, learning and application, develop into expertise (Halloy et al., 2023). But expertise is not automatically conferred by having lived through something. 

Equally, professional expertise cannot fully replicate knowledge gained through living an experience (Okoroji et al., 2023). 

Someone who has experienced psychosis knows something a psychiatrist who has never experienced it cannot know in quite the same way. The psychiatrist, in turn, has knowledge and expertise that experience alone cannot provide. 

Neither substitutes for the other. Each brings a different kind of knowledge, and it is through bringing them together that we can develop a fuller understanding of what is happening and what might need to change. 

What experience can bring

Which brings me back to the person I am working with. 

What he brings isn't simply 25 years of experience of prisons and secure mental health care. Over those years he has developed an unusual capacity to examine that experience from more than one position. 

He can remember what was happening internally for him while also examining how his behaviour was interpreted by those around him. He can ask not only what happened to me?, but what was happening between us? What did I think you were doing? What did you think I was doing? What could neither of us see from where we were standing? 

That matters because the same interaction can look very different depending on where you stand. Behaviour that appears provocative, threatening or non-compliant to a professional may have a very different meaning to the person displaying it. Equally, a response intended to establish safety or boundaries may be experienced very differently by the person receiving it. 

This is more than recounting an experience. It is knowledge developed from it. 

“The person with lived experience isn’t simply helping us to understand them better. What they know may help us understand something about our own practice that wasn't visible from where we were standing.”

And that knowledge can turn the lens around. Instead of telling us only about the person and what they experienced, it can reveal something about the interaction itself: the assumptions being made, the meaning attributed to behaviour and the practice surrounding it. 

That is more consequential. The person with lived experience isn’t simply helping us to understand them better. What they know may help us understand something about our own practice that wasn't visible from where we were standing. 

My contribution to our partnership is different: interrogating those insights, connecting them with evidence and professional knowledge, and working out what they mean for practice. 

Neither of us could do the other’s job. Together, we can translate that combined knowledge into interventions people can use and changes that have some prospect of sticking. And perhaps this is where the capability gap lies. Listening to lived experience requires us to make space for someone's story. Working with experiential knowledge asks us to recognise what has been learned from that experience, bring it into conversation with other forms of knowledge, and be prepared to consider what it means for practice. 

Our current work happens to be in secure mental health care. But the question is much wider. 

Whenever an organisation asks patients, service users, employees, citizens or communities to contribute what they know because of something they have lived, perhaps the question isn't simply whether we have listened. But instead, are we prepared for what they know to change what we do? 

References 

Bortolotti, L. (2026) ‘Obstruction of expertise performance as epistemic injustice: the case of lived-experience experts in mental health’, JME Practical Bioethics, 2(2), e000169. 

Halloy, A., Simon, E. and Hejoaka, F. (2023) ‘Defining patient’s experiential knowledge: Who, what and how patients know. A narrative critical review’, Sociology of Health & Illness, 45(2), pp. 405–422. 

Hopkins, I., Verlander, M., Clarkson, L. and Jacobsen, P. (2024) ‘What do we know about sharing power in co-production in mental health research? A systematic review and thematic synthesis’, Health Expectations, 27(5), e70014. 

Mah, H., Dobson, R. and Thomson, A. (2025) ‘The importance of lived experience: A scoping review on the value of patient and public involvement in health research’, Health Expectations, 28(2), e70205.