Lived Experience (LEX): the knowledge and understanding you get when you have personally lived through something.

Mind website (2024)

Less money, more problems

Sadly, in the UK, having less money means you’re less likely to have good health or a good education.

This is due to structural inequality.

Structural inequality: when rules, ways or systems make things harder for certain groups, based on race, gender, age, sex etc. Unfairness is built-in to society through schools, jobs, housing and healthcare. E.g. worse treatment and fewer chances.

People with less wealth are more likely to die earlier, face chronic illness, or lack access to higher education. Diagnosis and treatment can be riddled with bias, leaving many without correct support. Unfairly, health and education systems fail those with most need.

Such big issues demand urgent attention. Funders are now directing more money towards health inequalities research and one important way to do this fairly is to involve Lived Experience Experts or as we have termed them, LEXperts.

Involving LEXperts leads to more useful research, saving time and money. But how can we make the process of inclusion smooth?

Mobilising community assets to tackle health inequalities (MCA)

MCA is a pioneering £30m UKRI-funded research programme, led by University College London’s Culture-Nature-Health Research Group, in partnership with the National Centre for Creative Health.

MCA coordinates 40 projects, across three phases, working in some of the poorest parts of the UK. It uniquely centres LEXperts in leadership roles alongside researchers working with LEXperts (LEXademics), from across different academic disciplines.

LEXperts lead with academics, alongside policymakers and partners from:

• health and social care
• local authorities
• community groups and charities  

MCA values lived experience leadership at all programme levels, from the funding process to project implementation. While this approach encourages funders, researchers, and community partners to collaborate in new ways, it also presents the fundamental question of how to be truly inclusive of lived experiences and what the partnership looks like both for the LEXperts and the research partners.

One objective of MCA is to ensure LEXperts can contribute safely, minimising inevitable difficulties brought on by power imbalances, knowledge hierarchies and toxic research cultures. To support this we ask how could research institutions prepare before working with LEXperts? Once in, what changes/adaptations/support helps LEXperts flourish as co-researchers?

Lived experience vs theory

People facing health inequalities can be less likely to end up in academia, so many academic researchers will come to a topic from a distance - they may know the issues in theory but not have lived through them, unlike LEXperts.

Challenges

We LEXperts have lived through them.

We bring deep understanding and first-hand knowledge. Our insights can fill research gaps that academics - ‘coming from a distance’ - might overlook.

This can transform the impact of research.

The thing is, because of our past experiences, we, LEXperts might also carry trauma. Plus, often the work we do generates friction – it can be tricky.

Often, we have had bad experiences around health and education. These can change our whole lives. So, doing health research with higher education institutions can be off-putting. Worse, we can be treated badly due to power imbalances or unhelpful and unclear processes. We might need a bit of extra time to complete stuff because we can be impacted by poor health, not being able to work as a result or taking medication that slows us down with side-effects.

But with the right planning and preparation, and a trauma-competent approach, we can thrive.

It is extremely rewarding knowing that by contributing, your pain can help someone avoid the same problems.

We may just need a little extra care and sensitivity when working with us. However, ‘care’ and ‘sensitivity’ are not usually associated with academia, but ‘pressure’ and ‘power’ are.

The garden analogy: tending to growth

Our work is like tending a garden. Each person collaborating within MCA has unique needs. Some are like vines needing structure – a trellis to climb; others are seedlings requiring gentle care; some need greenhouses to incubate ideas; others just need space to grow.

Healthy gardens need good soil, with microbes that may be small but are essential contributors to growth. In our projects, these microbes are the creative and relational methods that build trust and connection. Without them, nothing flourishes.

Collaboration isn’t always smooth. Like gardens, it’s messy, requires patience, and sometimes yields unexpected results. But with care, even the most challenging environments can produce beauty.

A tap root scouts ahead

In nature, plants grow a single tap root before laying down root systems. Like a scout checking ahead, it assesses which soil has nutrients and obstacles to avoid.  We use a similar approach to test ideas to support LEX inclusion across all our projects.

This is new territory.

During 2023, the first phases of MCA ended. Kiz was appointed as the Lived Experience Producer in March 2023, to uncover the ideal conditions for LEXperts to thrive within health inequalities research. Our Lived Experience Advisory Group (LEAG), where Celeste is a member and co-researcher, was appointed in Autumn 2023 and offers peer-support and guidance.

The advisory group initially co-produced their own pay rate, piloted a podcast and tested LEX workshop models.

We assessed the ground to identify what LEX processes to apply and which to avoid. As the tap root extended we have been able to see which LEX expertise ideas (LEXpertise) can be applied to new projects in the next phase and where we need to adjust our plans.

What did we discover?

We all need to come together to adapt our approaches to build safer, more inclusive research environments because:

• Saying what you need can be hard.
• LEX practice often lacks safe ways to address harmful behaviour. How do you challenge the behaviour of those trying to help you fight injustice?
• Some researchers misunderstand the challenges LEXperts report, leading to flawed solutions.
• Support and understanding around LEXperts individual needs can be inconsistent.
• Power imbalances and shame can further complicate communication.
• Large institutional systems with unfamiliar processes can make us feel small and excluded.

Wider LEX research reframes old problems and links MICROaggressions to LEX, not just race, gender, or bullying.

MICROagressions are subtle, often unintentional behaviours, statements, or actions that communicate bias, prejudice, or negative stereotypes toward a marginalised group.

Barriers within Barriers

Identifying barriers and enablers to LEXpert inclusion in research is one of MCA’s key drivers. But who wants to talk about problems? It is not easy but it has to be done to make things better.

Microagressions are barriers to LEX inclusion but can be subtle and go unnoticed. Recognising the difficulty in raising issues, we created a microaggression table as a research outcome for project LEXperts to:

• Build, collaboratively, during Phase 3.
• Use as a communication tool to help identify/solve issues.

Asking LEXperts to list personally experienced microagressions is risky and could harm working relations within research teams. So, we decided to:

• Anonymise it and make it a collective rather than individual offering: ideas are generalised thus protecting the people involved.
• Include our wider, past and current LEX practice so no one is hurt through implication.

We added our own good practice suggestions based on our general LEX practice.

Example	Alternative
Expecting me to know something without checking my baseline understanding.	Assess my baseline knowledge: before assuming what, I know, ask me then help fill the gaps.
Asking me to adapt to your way of working or your organisational process.	Focus on what works for those we serve: ask me how we can align my approach with yours but consider the needs of those we’re working with. Let’s compare.
Presuming I’m incapable due to illness.	Ask directly if there’s an issue: don’t make assumptions about my capability. Engage in open conversation about how you can support me rather than presuming the problem lies with me.
Presuming I can’t contribute due to my background or social status.	Ongoing training and coaching: provide regular training on biases and ensure coaching to support real-world application. Build in time for reflection and support from peers and mentors.
Belittling aspects of my culture that don’t align with yours.	Acknowledge cultural differences without judgment: recognise that some cultural models have been privileged to justify oppression. Respect differences without diminishing them.
Dismissing feedback about power structures.	Listen actively, even when it's uncomfortable: acknowledge the impact of the environment on dynamics.
Not listening to my ideas but later adopting them when yours don’t work.	Incorporate structured reflection in decision-making: encourage decision-makers to reflect on why ideas are accepted or rejected. This helps identify unconscious biases.

This process is just one way that LEXpertise is centred within MCA.

Celeste reflects:

My experience working in the LEAG has thrown up questions around systems and what is needed to create healthier cultures where creative work can support change and collaboration.

1. How do we create safe spaces where wellbeing can be central to responding to diverse individual needs so meaningful work can take place?

2. How can this contribute to a shifting culture where those with lived experience of health inequalities are empowered through acknowledgement and visibility of both vulnerability and strengths in their skills and expertise?

There are many challenges: being comfortable understanding and working with complexities and uncertainty is key.

Collaborating with others with respect, mutual care and openness to learning builds trust in the possibility for change and strength in togetherness.

Creating an inclusive research environment

Below are some approaches to support an environment where people in health inequalities research can genuinely thrive, whether as LEXperts or LEXademics:

Embrace creativity to build connection and innovation

Creative methods encourage empathy, reduce emotional intensity, and help teams forge deeper connections, making it easier to navigate challenging issues and complex topics together. Our LEAG meetings employ activities designed to reduce burnout and build trust like mindfulness, drawing, and collaborative art-making.

Embed reflection and continuous learning

Building time for reflection helps make our support structures more robust.  Structured debriefs after each meeting, using questions like "What went well?" and "What would be even better if…?" help to gather honest feedback. Teams are encouraged to adapt and improve practices.

Professional psychological supervision

We realised gaps in our own LEX provision and support when we sent our tap root out. So we are currently working with a professional supervisor – a creative therapeutic practitioner - to ensure our own processes evolve in response to the needs of both LEXperts and LEXademics.

Prioritise emotional safety

Embedding emotional safety into every stage of the research process is key to maintaining good wellbeing. We implemented:

• Two-room meeting structure: During in-person sessions, we provide two rooms — one for work and one for rest or decompression. Participants can step away to take medication, rest or if they are feeling overwhelmed.
• ‘Working Well’ agreements: LEAG established a set of behaviour expectations, including mutual respect and listening, to create a safe and inclusive environment. Boundaries are essential. When pain-stories surface, they can trigger the listener. We agreed how we want to manage such issues from the outset, so we are not stung unexpectedly.
• Trauma-competent practices: Meetings begin with mindfulness exercises and check-ins to create a calm, supportive atmosphere.

We want to share more but space is short.

We hope to carry this momentum forward, helping projects build on these ideas with tools like short explainer videos, creative storytelling opportunities, and guides to reflective practices.  By inviting others to co-create—through LEX activity cards and a LEX handbook—we aim to make sharing LEXpertise easy and supportive.

Conclusion

As we move through this work, challenges become clear.

We now know that simply bringing LEXperts into academia is not enough – we need to think carefully about the harms associated with this work and how these are (often unintentionally) perpetuated through power hierarchies.

We want to create a ‘third space’ – neither ‘community’ nor ‘academic’: a safe space and culture where everyone's wellbeing is prioritised over ‘doing the work’.

We are challenging norms, unlearning old habits. Mistakes happen, but this is part of the process: a shared learning journey. 

By pooling our knowledge and building truly inclusive research with LEXperts, health inequalities can be avoided.

As an English teacher, I’d encourage the kids with this:  

First 

Attempt  

In  

Learning  

We will ask projects for ‘F.A.I.L.s’ rather than ‘fails’ to help us grow, together.

A PDF VERSION OF THIS ESSAY IS AVAILABLE HERE

---

This work is licensed under CC BY-NC-ND 4.0  

Disclaimer: The views expressed in this report are not representative of the views of the British Science Association or UK Research and Innovation.