Centring Lived Experience: a strategic approach for leaders
Lived experience will be having a meaningful impact on your organisation when it changes what you do, how you do it, or the impact you have—and when taking part benefits the experts by experience involved.
For this to be a significant change, centring lived experience in a strategic and systemic way across your organisation is key.
But what are the traits of a charity doing this well? From our conversations with Research Partners, we identified twelve common themes that felt like ingredients for charities centring lived experience meaningfully.
Related to Step 1
1. Senior leaders are committed to meaningfully centring lived experience
Lived experience is prioritised by organisational leaders, who are excited and enthusiastic about centring lived experience within the organisation. Lived experience is recognised and celebrated regularly by leaders.
2. The charity is willing to adapt and do things differently to be accessible
It alters existing processes and structures, such as the time and format of a meeting or how skills required are shared between a team. It is open to trying different ways to centre lived experience depending on the needs of certain individuals.
Related to Step 2
3. Centring lived experience has a clear shared purpose
At a strategic level and operational level, there is clarity around why lived experience is being centred (and what the charity hopes will be different as a result). Staff and experts by experience are engaged and working towards the same goal.
4. Lived experience is an important feature of the charity’s strategy
Its importance is emphasised, staff have permission to spend time and resources on it, and people are held to account for doing it well. It contributes towards a mindset of being committed to centring lived experience, and ensures lived experience is visible, present and on peoples’ minds
5. The charity is ambitious but realistic about what it can achieve
Limited resources are prioritised effectively. Where resources are limited, less is done well rather than over commitments made.
Related to Step 3
6. Lived experience influences strategic and operational decisions
Such as service design, peer research and Board level strategic decisions.
7. Lived experience is shared early
Experts by experience are included early on in decision making when there is still room for their input to make a difference to the outcome to strategic and operational decisions. ¬
8. The importance of trust and relationship building is recognised
Building relationships so that everyone can engage fully and feel confident to provide input and challenge is a priority, and time and resources are allocated to this. There are clear and transparent mechanisms for closing the feedback loop on decision-making, which builds trust.
9. There is a culture of openness and flexibility
There is an organisational mindset of being open to change and adapting, which makes change and flexibility the norm. Approaches to centring lived experience are constantly evolving, with a high degree of flexibility and fluidity.
Related to Step 4
10. The charity is honest and transparent about the role of lived experience
Clarity over the level of influence an expert by experience’s input will have on a decision or an output builds trust and avoids disappointment and frustration.
11. The charity supports everyone to engage
Including staff and experts by experience—for example by paying travel expenses, putting in time to prepare for a meeting together, training, or providing a safe space.
12. Continuous learning and improvement are high on the agenda
There are processes to capture learning, and a culture of continuous improvement which increases the impact of centring lived experience. An organisational mindset of being happy to engage with critiques, learning from mistakes, and constantly thinking about how to improve supports this.
Meaningfully centring lived experience could be a big change for your charity. Step 1 is about laying the foundations for this work. This will help you define an ambitious but realistic approach that is tailored to your charity, and doesn’t have you re-inventing the wheel. Make this step proportionate to your charity: This could be an in-depth rigorous exercise or a series of short conversations.
- Build buy-in and excitement about meaningfully centring lived experience across the organisation with fellow senior leaders and other colleagues.
- ‘Walk-the-talk’ by regularly sharing commitment to doing this well, through words and actions. Involve experts by experience in the process.
- Reflect honestly on your organisation and its current capabilities and resources. Be curious about the approaches of your sector peers, so that you have good information on which to base the strategic decisions you will need to make in step 2.
- Listen and learn.
|Question to ask
|What might help you answer?
|What unique needs do experts by experience have in our sector that we will need to consider in our strategy design? How are these needs changing?
|Desk research analysing needs data. Speaking to experts by experience.
|What are the established power dynamics within our sector?
|Speaking to experts by experience.
|Who else is centring lived experience in our sector, and what have they learnt?
|Consultation with peers via interviews, surveys or a roundtable.
|What opportunities for collaboration are there?
|Consultation with peers via interviews, surveys or a roundtable.
- Shaping strategic decisions about centring lived experience for your organisation.
- Ensuring that your approach to centring lived experience aligns with the organisation’s overall strategy.
Once you are clear on what you want to achieve and why, step 3 is working out how to get there. This is the longest step, and there are likely to be several iterations and revisions to your approach as you test and learn. You will want to carefully consider what to do when—it is OK to have an ambitious goal but take small steps towards progressing it.
There is no ‘right’ approach, and what is right for your organisation and the people it supports might take some time to work out. It will also change over time. You will want to regularly sense- check whether your approach is working.
This guidance suggests the different elements of your approach you will need to consider, and the questions you’ll need to ask yourselves.
- Support and encourage those working on Step 3, allocating the time and resource they need.
- Be clear about how decisions on the approach will be made and by who. Set clear lines of accountability and responsibility for each activity and decision.
- Ensure that you can match decisions made in Step 3 with sufficient resources. If you can’t, scale it back so it is more realistic.
- Listen to feedback from colleagues about what is working and not working, either in the design or delivery of your approach, and commit to responding to it.
- Set clear expectations around the timeline to develop and implement the approach.
Once you’ve got structure and processes in place to support your approach, you’ll want to put these into practice. While this will not always be done by senior leaders, senior leaders should make sure that delivery is meaningful and safe for everyone by setting clear policies and principles around delivery.
These considerations will be highly dependent on your charity and its context, but in this guide, we’ll explore some examples that will apply to most charities. It is likely you will have other considerations.
For particular groups, there will be additional considerations—for example, for children and vulnerable adults, additional safeguarding measures should be in place.
- Set clear expectations around how certain situations will be navigated.
- Be clear about the principles and values that should underpin the delivery of involvement work.
- Support your colleagues to make decisions that result in meaningful and safe delivery of involvement work.
Applying Step 4 to your charity’s governance
- Ethical considerations: Questions to consider might be: what safeguarding procedures, and policies might you need to introduce to your governance? How will you ensure a safe space in Board Meetings?
- Diverse input: Where and how might you be recruiting for new trustees? What skills are you specifying in your job description? How are you making your governance accessible so that you attract a diverse range of trustees?
The best way to approach centring lived experience will inevitably vary depending on the groups your charity works to support.
Many specialist organisations have shared learning / advice for particular groups which may be useful as you consider this within your own organisation, for example:
- Welsh Women’s Aid guidance on involvement with survivors of violence against women, domestic abuse and sexual violence
- The Alzheimer’s Society’s toolkit for involving those with dementia
- UK Youth’s EmpowHER Toolkit contains resources to use when capturing the voices of young people.
- Six “how to” guides developed as part of the evaluation of the #IWill Fund, including on supporting senior leaders to commit to youth voice and connecting young people with decision-making