How to establish a lived experience advisory board

A lived experience advisory board gives patients, people who access services and/or carers a regular route into an organisation's work. Unlike a one-off workshop, it can follow issues over time, review how plans develop and return to advice given at an earlier meeting.

That continuity is useful, but it also creates responsibilities. A board needs a clear purpose, suitable membership, a link to decision-makers and a way to show what happens after advice is given. Without those things, it can become a recurring conversation at the edge of the organisation.

The steps below cover the main decisions to make before the first meeting.

1. Decide what the board is for

Start with the organisational need. What will this board advise on, and why is a standing group a better fit than a consultation or short project?

• advising a programme, service or senior team over time
• reviewing policies, plans, pathways or communications
• identifying themes across patient and/or carer experience
• testing ideas before wider development
• following progress on earlier recommendations
• bringing lived experience into governance and improvement work

Avoid a purpose so broad that the board could be asked about anything. A stronger purpose says what the board will advise on, which proposals it will see before decisions are made and how it will receive updates on the organisation's response.

2. Identify its route into the organisation

An advisory board advises. It may not hold formal decision-making authority, but it needs a reliable connection to the people who do. Before recruiting members, decide:

• which board, committee, programme or senior leader receives its advice
• who attends from the organisation
• how recommendations and differing views will be recorded
• who is responsible for responding
• how urgent matters are escalated
• when the advisory board will hear what happened next

Senior contact should be more than an occasional guest appearance. If the board is expected to influence a programme, someone close to that programme needs to understand the discussion and carry it into the relevant decisions.

3. Write terms of reference people can use

Terms of reference should help members understand the board rather than merely satisfy an administrative requirement. They should cover purpose and scope, membership, meeting format, chairing, agendas, papers, confidentiality, reporting, concerns, governance links and review.

Use plain language. Discuss the document with members at the beginning and revisit it when the board's work changes.

4. Think about whose experience is relevant

Membership should follow the board's purpose. A board advising one service may need people with recent and direct experience of that setting. A board working across a wider system may need a broader mix of patient and carer perspectives.

• patient experience, carer experience or both
• the services, pathways or settings involved
• different experiences of access and outcomes
• age, disability, culture, ethnicity, gender and other factors relevant to the work
• people who may face barriers to conventional meetings
• the mix of skills needed for reading papers, discussion, challenge or other tasks

Do not expect one member to represent a whole population. A useful board can identify shared themes and important differences without pretending that its membership captures every experience.

5. Make participation possible

Board papers, meeting habits and organisational language can create barriers even when a meeting is described as accessible. Ask members about practical and communication needs, including format, timing, breaks, accessible venues and technology, plain-English papers, alternative contribution routes, digital support and a named person for practical questions.

Avoid sending a large pack of technical papers and expecting members to identify what matters. A short cover note should explain why each item is coming to the board, what stage it is at and which questions need advice.

6. Design the first meetings carefully

The first meeting should not attempt to solve the organisation's hardest problem immediately. Members need time to understand the purpose, each other's roles and how the organisation will use the board's work.

1. 1.Introductions and the purpose of the board
2. 2.Discussion of the terms of reference
3. 3.An accessible overview of the relevant organisation or programme
4. 4.Agreement on meeting practices and access needs
5. 5.One focused subject that shows how advice will be gathered
6. 6.Confirmation of actions, response routes and the next meeting

7. Build agendas around decisions and learning

A standing board should not become a sequence of presentations from the organisation. For each agenda item, state why it is being brought to the board, what has already been decided, what is open to influence, what members are being asked to do and what will happen after the meeting.

Members should also have a route to suggest subjects. The board is less likely to notice emerging issues if every agenda is set entirely by the organisation.

8. Record themes, recommendations and differences

Traditional minutes may record who spoke without capturing the lived experience insight clearly enough to use. Consider a short advisory summary setting out the question discussed, recurring themes, recommendations, relevant differences in view, unanswered questions, named actions and when the item will return.

9. Close the loop at every meeting

Begin each meeting by returning to earlier advice. Explain what has progressed, what has changed, what cannot proceed and what remains open. Where a recommendation cannot be followed, explain the reason. A clear answer maintains more trust than silence or an unrealistic promise.

10. Review whether the board is working

After an agreed period, review the board itself. Look beyond attendance and number of meetings. Ask whether the right questions reach the board early enough, whether members understand their role and feel able to disagree, whether advice reaches decision-makers and whether the arrangement still fits its purpose.

Common problems to avoid

• Recruiting before the purpose is clear
• Treating the board as a representative sample
• Bringing only finished plans
• Letting the same confident voices dominate
• Failing to report back