In this blog, Dr Maddy Thompsons shares some of the latest thinking and practice from our work with councils, health and education providers, and partnerships across the UK on embedding lived experience voice in service and policy design.
Policymakers are increasingly aware of the importance of hearing and responding to lived experience voices, particularly in poverty alleviation and health improvement. However, doing this meaningfully and ethically in the design and delivery of policy, commissioning and services is not easy. Here, we reflect on what we have learnt around striking a balance between being non-extractive, trauma informed and sustainable.
Lived experience refers to “the knowledge, insight and expertise that comes from having first-hand experience of” social issues (Wellcome, 2026), such as poverty. It recognises the specific, valuable and unique expertise people with lived experience bring. It also recognises the diversity of lived experience voices, that change according to people’s personal, demographic, geographic lives and histories.
Getting this right is important. With the ability to better reach, understand and analyse lived experiences, it is possible to design services and policies that
Centring lived experience voices needs a variety of tools and approaches to ethically reach people with lived experience. Some of these tools include:
Usually, a combination of tools is best – there is no one size fits all approach to engaging people. It’s important to recognise that communities are diverse, and people have different needs and preferences.
Identifying and speaking to people with lived experience is, on its own, not enough. Our experience has revealed 5 core principles to follow to ensure lived voice is meaningfully, ethically and sustainable embedded.
1/ Act early with a clear mandate. If engagement is too late or there are no routes into action, lived experience voices are unable to shape change.
In our evaluation with For Baby’s Sake, we co-designed the evaluation with care experienced young people before the project began. This ensured lived experience voices shaped each and every element of the evaluation.
2/ Develop trust. Formal consultation processes are not always trusted. New routes are needed, such as using peer researchers and trusted organisations.
We recently trained 10 students as peer researchers in Gateshead College. We supported them (with training, advice, and payment) to design and lead interviews with 97 peers. This developed nuanced understanding about how the college can better support learners with experience of poverty and financial exclusion. The peer researchers also developed skills.
3/ Recognise the value of lived experience voice. People deserve the opportunity, time, fair pay, and training to help them design what works for them.
For example, in Aberdeen we worked intensively with 19 young parents over a 12-week engagement programme. This involved workshops, surveys, group discussions, and co-design activities to shape a new young-parent employability model. We provided payment to participants, as well as support for travel and childcare costs.
4/ Feedback change. If people don’t see how their expertise leads to change, distrust grows.
With Youth Futures Foundation, we created an interactive ripple effect map. The map let young people track their own change, and see theirs and others’ changes across the system.
5/ Avoid duplication. Too often, the same groups are asked to give their views and provide expertise on the similar things. System partners don’t see existing insights.
For Highland Council, we proposed a cyclical approach where strategic partners can regularly collate and reflect on lived experience voices.
