What is an Expert by Experience in health and social care?

An Expert by Experience is someone who contributes knowledge gained through direct personal experience. In health and social care, that usually means experience as a patient, as someone who has accessed services, or as a carer.

The word expert does not suggest that one person knows everything about a condition, service or community. It recognises that direct experience creates a form of knowledge that is different from clinical, professional, academic or operational knowledge.

That knowledge can help an organisation see how a policy, environment, conversation or service is experienced in practice. It can also draw attention to questions that would be easy to miss from within the organisation.

What makes lived experience a form of expertise?

People using health and social care services notice things that may not be visible in a procedure or performance report. They experience how information is explained, whether a space feels safe, what it is like to wait, how choices are offered and what happens when different parts of a service do not join up.

Carers can bring another important perspective. They may see changes over time, support communication, help someone navigate services and understand what happens between appointments or outside a care setting.

An Expert by Experience draws on what they have encountered and learned. In some roles, they may also listen to patient and/or carer feedback, review information from several sources, identify themes or work alongside people with different experiences.

The contribution is most useful when the purpose is clear. Asking someone to share their story is not the same as giving them a defined role in a service review, research project or decision-making process.

What can an Expert by Experience do?

The role depends on the work. Experts by Experience may:

• visit a service and contribute to a review or assessment
• listen to and help gather patient and/or carer feedback
• sit on an advisory board, steering group or project group
• review policies, pathways, training materials or public information
• contribute to research design, interviews, focus groups and analysis
• test products, services, resources or digital processes
• help plan or co-deliver training
• contribute to a panel, event, film or facilitated discussion
• work in an agreed role within an organisation

These activities require different things. Someone who is well suited to reviewing written information may not want to speak at a large event. Someone with relevant experience of one setting may not be right for a project about another. Good involvement starts by defining the work, then considering what experience and way of contributing fit it.

Is an Expert by Experience the same as a patient representative?

The terms can overlap, but they are not always used in the same way. Patient representative can suggest that a person is expected to speak for a wider group. An Expert by Experience should not be assumed to represent every patient or carer. They bring their own knowledge and may be able to identify wider themes, particularly when they have listened to others, but their personal experience remains their own.

This distinction matters. It allows people to contribute honestly without being asked to make claims on behalf of communities they do not represent.

Do Experts by Experience need professional qualifications?

Not simply because they are Experts by Experience. Their starting point is direct experience, not a clinical or academic qualification. Some assignments may need additional skills, such as interviewing, chairing a discussion, analysing information or contributing to a particular governance process. Those requirements should be connected to the actual role rather than used to make lived experience sound like a conventional professional credential.

Professional and lived experience knowledge can sit alongside each other. One does not need to imitate or replace the other.

Does someone have to tell their full personal story?

No. People should be able to decide what they share within the agreed purpose of the work. Some personal detail may be relevant, but useful involvement does not depend on disclosing the most difficult parts of someone's life. A clear brief helps the contributor understand what the organisation needs to learn and which parts of their experience may be helpful.

It is also important to agree boundaries, confidentiality and routes for support before the activity begins. This is particularly relevant when the subject may be distressing or when other people's personal information could arise.

How is the role used in health and social care?

There is no single model used by every organisation. The Care Quality Commission, for example, describes Experts by Experience as people with recent personal experience of using or caring for someone who uses health and social care services. It uses their knowledge in activities including evidence gathering, conversations, document review, design work and events.

That is one public example of the role. Other organisations use Experts by Experience in research, service design, workforce activity, quality improvement, education and governance. The responsibilities and boundaries should always be set for the particular work rather than assumed from the title alone.

What does a well-structured role look like?

A useful starting point is to answer six questions:

1. 1.What is the organisation trying to understand, decide or improve?
2. 2.Why is lived experience relevant to that question?
3. 3.What will the Expert by Experience be asked to do?
4. 4.What information, preparation and support will they need?
5. 5.How will their contribution be recorded and considered?
6. 6.What will happen after the activity?

These questions protect the value of the role. They also reduce the risk that someone is invited late, asked to speak without context or left unsure about whether their contribution went anywhere.