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Many charities are trying to involve those with lived experience of the issues they work on in decisions that they make. Whether this is developing an organisation wide strategy, designing a new service, undertaking peer-led research or leading a campaign—as a sector, we are more aware than ever that this is not only the right thing to do, but can make our activity more relevant and more impactful.

But ‘involvement’ is a broad term, and I’ve seen lots of charities do it in different ways. What are the different types of involvement and when is the right time to consider each?

Involvement includes a spectrum of approaches

You are unlikely to involve people with lived experience in the same way in every activity across your organisation. In NPC’s publication Make it count, we talk about five different approaches to involvement, which have been adapted from other frameworks such as Arnstein’s Ladder of Citizen Participation, and Hart’s Ladder of Children’s Participation, to the National Co-production Advisory Group’s Ladder of co-production. These different approaches are best represented across a continuum of involvement and influence.

I’m not too worried about the language used here. I think it’s okay for different organisations to mean something a bit different by ‘involvement’ or by ‘co-production’. But what is important is that you know exactly what you mean by it, and why you are deliberately choosing a particular type of involvement. How you design your approach to involving people affects the type of support and engagement required, the depth and breadth of engagement required, and also the influence the  involvement will have on decision-making.

Five different approaches on the spectrum of involvement are:

  • Research: People with lived experience provide their views or information to help answer a broad set of research questions. Information tends to flow one-way. Many charities use this approach (often in the form of surveys) to ensure they make informed decisions about how to meet need.
  • Consultation and feedback: People with lived experience are invited to submit their views or feedback on a particular question or to test an idea or service. Many charities use this approach when they conduct user testing or when gathering feedback on a service. They then make changes based on their findings.
  • Collaboration and co-design: People with lived experience provide more open input than in a consultation and have sway over what gets decided. As with all approaches, the extent of their influence on decision-making should be agreed and transparent.
  • Co-production: This is a popular word! When NPC talks about co-production, we mean that this goes one step further than collaboration and co-design, when decision-making power is shared between the parties working side-by-side, such as the staff and trustees of an organisation and people with lived experience. This is where people with lived experience have as much of a say on what gets decided on specific aspects of an organisation’s work as those in the organisation.
  • User-led: People with lived experience lead decision-making, and are supported to achieve their goals by others (for example, the staff within an organisation).

There are trade-offs at either end of this spectrum

What kind of approach is appropriate and useful depends on the situation, and also how much people with lived experience want to be involved and what is possible, and so one type is not always better than the other. It should be seen as a horizontal spectrum instead of a vertical hierarchy. But if we want people with lived experience to have more influence and to be strongly involved in shaping, or sharing, decisions, then utilising approaches like co-design and co-production, and those that are user-led, are crucial.

There are also other trade-offs to consider:

  • Breadth versus depth of insight: Consultation is suited to gathering a larger number of views at a high-level. As you move towards collaboration, co-production and user-led approaches, these are more suited to working with fewer individuals but in a more in-depth way. Sometimes breadth is more appropriate than depth—for example where you have a great diversity of views represented.
  • Strong relationships and trust between service users and the organisation: In order to contribute confidently and meaningfully to a more ‘hands on’ involvement approach on the spectrum, people with lived experience will need a good understanding of your organisation. They will also need to feel confident and supported to contribute, and trust that their input will be valued. This is necessary for collaboration, co-production and user-led approaches, and it can often take time to build up this trust. Because of the need for relationships and trust building, approaches towards this end of the spectrum take time and more resource, and cannot be done quickly.

Thinking carefully about ‘how’ to involve people

In reality, when you are working with people with lived experience, what you are doing won’t fit neatly into one of these five categories every time. Even within one activity—say a brainstorming session with experts by experience or a focus group session with young people—there will be a flow between these different approaches.

But I have found that by talking about these different approaches to involvement, it forces charities to think more deliberately about how you are involving people and why you are doing it that way—and to be very transparent about that. Ultimately, it can help charities to think more carefully about user involvement. It also helps some charities realise that it’s okay for involvement work to look different at different times or in different parts of their organisation.

What is important, is that it affects how decisions are made

Whatever the type of involvement, being deliberate about the purpose of the approach, and flexing that approach to the situation, is key. Make sure you are thinking carefully about how you can support people to contribute (there are some helpful toolkits available to give you some guidance, for example the Young Women’s Trust Toolkit for meaningful participation and Mind’s Influence and participation toolkit). And remember, reporting back on the difference a person’s involvement has made is crucial.

What each of these five approaches have in common is that if done well they should have some influence on what and how decisions are made within your organisation. Without this, you won’t be involving people with lived experience in shaping decisions—genuine involvement requires a re-balance of decision-making power.

If you want to talk to me about involving people with lived experience, or think we can work together, please get in touch with me.

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