What does good lived experience involvement look like?

Good lived experience involvement is not defined by how many people attend a meeting or how moving a presentation feels. It is defined by whether people have a clear and appropriate role in work that can make use of what they contribute.

That role may be large or small. A service might need focused feedback on a patient information leaflet. A programme board may need lived experience advice throughout a two-year change process. What matters is that the approach fits the question, starts at the right point and gives the contribution somewhere to go.

The following principles can help an organisation judge whether its approach is ready.

Begin with a real question

We need lived experience in the room is an intention, not yet a brief. Before inviting anyone, the team should be able to explain what it is trying to understand, decide, design or improve. It should also know why direct experience is relevant and which parts of the work are open to influence.

This does not mean the organisation must have every detail settled. It means there is an honest reason for involving people and a willingness to be clear about any limits.

A focused question might be:

• How do patients experience the transition between two services?
• What could make this information easier for carers to use?
• Which parts of this proposed pathway may create avoidable barriers?
• What should a service review pay attention to beyond the available performance data?

Involve people early enough to affect the work

An organisation may technically involve people while leaving them very little room to contribute. This happens when a near-final plan is presented for comments after the important decisions have been made.

Early involvement does not always mean starting with a blank sheet. It means bringing people in while their input can still affect the relevant part of the work. If some decisions are already fixed, say so. People can then focus their time on the areas where there is a genuine choice.

Choose people for relevance, not convenience

Lived experience is broad. Having used one service does not automatically make someone the right contributor for every project in health and social care. Think about the experience relevant to the question, the people affected, the setting and the type of contribution required.

A project may need patient experience, carer experience or both. It may need people with different experiences of access, communication, culture, disability, age or care settings. One person's presence should never be used to claim that a whole community has been represented.

Make the role understandable

People need to know what they are joining. Before the work begins, explain:

• the purpose of the activity
• why they have been invited
• what they will be asked to do
• who else will be involved
• what is and is not open to change
• how information will be used
• any confidentiality or consent requirements
• what will happen after their contribution

The explanation should be written in accessible language and discussed rather than simply sent as a long document. Staff need to understand the role of Experts by Experience, how it relates to their own responsibilities and how the contribution will enter the decision process.

Remove avoidable barriers to taking part

Accessibility is wider than providing a ramp or offering an online link. It includes the timing, length, pace, language and format of the work. It also includes whether people have the information and preparation they need.

• Can people access and understand the papers?
• Is there more than one way to contribute?
• Does the schedule allow breaks and time to process information?
• Have communication or sensory needs been discussed?
• Is the technology suitable and is help available if needed?
• Are people being asked to revisit difficult experiences without a clear reason?

Create room for different views

Lived experience is not one agreed position. Patients and carers can experience the same service differently and may disagree about what should change. Good involvement records common themes where they exist and makes important differences visible.

The organisation should also resist asking one Expert by Experience to validate a decision. Their role is to contribute knowledge, questions and judgment, not to provide a stamp of approval.

Connect the contribution to a decision or piece of work

People are more likely to have an effect when there is a clear route between the activity and the organisation's work. That route may be a report to a board, recommendations to a project team, changes to a draft, themes included in a service review, or questions that inform a later research stage.

Someone needs responsibility for bringing the contribution together, distinguishing personal examples from wider themes and placing it in front of the people who can respond.

Return to what people have said

Closing the loop does not mean promising to adopt every suggestion. It means showing that the contribution has been considered.

• what was heard
• what the organisation has decided
• what will change
• what will not change and why
• what needs further work
• when the subject will be revisited

Support honest contribution

People need to be able to raise concerns without being treated as difficult or ungrateful. They also need clear boundaries around the role. This means explaining routes for questions or concerns, discussing confidentiality, and making sure contributors know when an issue needs to move into a clinical, safeguarding, employment or complaints process.

Do not treat every form of involvement as co-production

Consultation, engagement, co-design and co-production can all be useful. Problems arise when a limited opportunity to comment is described as co-production. Honest language helps set realistic expectations.

A practical check before you begin

1. 1.Is there a clear question or decision?
2. 2.Can lived experience still influence it?
3. 3.Have we considered whose experience is relevant?
4. 4.Is the role and its boundary clear?
5. 5.Have access and preparation needs been discussed?
6. 6.Is there a way to record different views accurately?
7. 7.Who will receive and respond to what is learned?
8. 8.How will we return to contributors afterwards?