Examples
Worked examples
- Is an instance
A homelessness research project employs lived-experience experts as paid peer researchers.
- Is an instance
A mental-health study cites named lived-experience advisors as co-authors of the paper.
Counter-examples
Looks similar, but isn't
- Not an instance
Inviting a service user as a one-off panel member without remuneration or ongoing role.
- Not an instance
Treating lived experience as anecdote rather than expertise in research dissemination.
Editorial commentary
A lived-experience expert (sometimes ‘expert by experience’) is a person whose personal, first-hand experience of a condition, service, or issue is recognised as expertise contributing to research, policy, or practice — alongside, not instead of, professional training. Common contexts include experience of mental-health services, homelessness, disability, chronic illness, discrimination, or migration. The term originated in mental-health and social-work contexts and has since spread across health and social-science research.
Roles this expertise can take
Lived-experience experts commonly serve as patient partners, peer researchers, community advisors, or co-investigators, depending on how formally the role is structured. Recognising the expertise properly means a named role, compensation, relevant training, and genuine decision-making influence — not token representation on a list that isn’t actually consulted.
How this differs from PPI more broadly
‘Lived-experience expert’ describes the person and their basis of expertise; Patient and Public Involvement (PPI) describes the institutional/funder framework (most formally developed in the UK via NIHR) for structuring how patients and the public are involved in research. A lived-experience expert may contribute within a formal PPI structure, or in settings PPI doesn’t cover — policy panels or community-advisory boards. See patient partner and co-production for related roles and methods.
Compensation and recognition
Established good practice, most explicitly documented in UK NIHR/INVOLVE payment guidance, treats paying lived-experience experts for their time as standard practice, not optional goodwill — the same principle applied to any other expert consultant. Failing to pay while paying academic collaborators is one of the clearest markers of tokenistic involvement.
Related structures
A Community Advisory Board (CAB) is one formal mechanism for structuring ongoing lived-experience input into a research programme. Citizen science is a related but distinct model in which public participants contribute to data collection or analysis.
Frequently asked questions
Is a lived-experience expert the same as a PPI contributor?
Related but not identical — PPI is the funder/institutional framework; lived-experience expert describes the person and their basis of expertise.
Should lived-experience experts be paid?
Yes, per established good-practice guidance (e.g. UK NIHR/INVOLVE) — payment is treated as standard practice.
Where did the term come from?
Mental-health and social-work practice, before spreading into wider health and social-science research.
References
- Beresford P, ‘Public participation in health and social care’, Citizenship Studies, 2002. NIHR/INVOLVE payment guidance. SAMHSA recovery-oriented care framework.
Also known as
Expert by experience · Lived experience advisor
Machine-readable encodings
Use in your systems
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