The charity sector is waking up to the value of lived experience – the insights of people directly affected by an issue. There’s a growing recognition that involving people with lived experience in decision-making is beneficial for all organisations in the social sector.

But that doesn’t mean it’s easy to make it happen. It can be hard to know how to get started. And it can be even harder to know what exactly you’re aiming for.

Our new research emphasises the importance of involvement being meaningful – actually changing what you do, how you do it, and the impact you have. But we found that you can do this with a strategic approach, spearheaded by senior leaders.

We worked with eight charities leading the way in centring lived experience well to understand what good looks like. We found 12 common themes – the ingredients for getting it right.

Charities centring lived experience meaningfully:

1. Have committed senior leaders, who prioritise involvement work in the organisation and are visibly excited and enthusiastic about this work. Having leaders who advocate for this work, and lead a strategic approach, is crucial to success.
2. Are willing to do things differently to involve users and experts by experience, instead of expecting these people to fit into existing models and then being surprised when involvement doesn’t lead to the results you want to see. This might be changing processes, shifting the format of meetings, or bringing new skills into your team.
3. Have a clear shared purpose for involvement work, that is bought into by trustees, senior leaders, staff and experts by experience alike. This gives clarity around why lived experience is being centred (and what the charity hopes will be different as a result).
4. Have lived experience within their organisational strategies, which emphases its importance, gives staff permission to spend time and resources on involvement work, and ensures that people are held to account for doing this work well.
5. Are ambitious but realistic, allowing limited resources to be prioritised effectively and ensuring that charities are focussing on doing less work but doing it well, rather than overcommitting and damaging trust with experts by experience.
6. Let lived experience influence strategic and operational decisions, rather than restricting involvement to one area of work. This might include experts by experience influencing service design, peer research projects, or board level strategic decision making.
7. Ensure lived experience is shared early on in – and throughout – decision making, when there is still room for their input to make a difference to final outcomes, rather than as a tokenistic add-on towards the end of a process.
8. Value relationships in a way that builds trust between staff and experts by experience, so that everyone can engage fully and feel confident in the shared work. Building relationships takes work, and so time and resources need to be allocated to this.
9. Have a culture of openness and flexibility, prioritising the shared purpose of involvement work over preserving existing ways of work, and feeling comfortable with change.
10. Are transparent about the role of lived experience, ensuring that everyone involved is clear about the level of influence an expert by experience’s input will have on a decision or an output, which in turn builds trust and avoids disappointment and frustration that undermines impact.
11. Support everyone to engage—for example by paying travel expenses, putting in time to prepare for a meeting together, or giving training that allows people to participate in conversations.
12. Place continuous learning and improvement high on the agenda, with clear processes for capturing feedback and learning from experts by experience and staff, and a culture of continuous improvement which increases the impact of work going forwards. No one gets this right the first time – but you will get there quicker with better processes for learning

So if that’s what good looks like – how can you get there? Our recent guidance in this area sets out four key steps for leading this work in a charity.

Each organisation and issue is different, and our steps will need to be adapted to your circumstances and the people you work with.

But one important constant is the need to take a strategic approach that’s open to wider cultural change.

Centring lived experience: a strategic approach for leaders is now available at thinkNPC.org.

Naomi Chapman is a Senior Consultant at NPC, a think tank and consultancy that for more than 20 years has been helping funders, charities, and policymakers to maximise social impact.