Lived experience consultancy in research · For research teams
Funders and journals now ask for lived-experience involvement. Too often it ends up as a paragraph added at the end. We help you build it in from the first idea, so your study measures what matters to patients. We call this patient relevance.
What we champion
Scholarly
Outcomes a study can measure and defend, with involvement reported to standards such as GRIPP2. Better involvement makes the research more valid, not only more inclusive.
Psychologist
Shaped by the people closest to the condition, from the first idea, so the study measures what matters to patients.
Watch
Sam at TU Dresden, explaining the patient relevance framework to the International Research Training Group (IRTG) during its 18M grant.
What we offer
We run focus groups using why-what-how-repeat and set up the roles. Then we help you choose outcomes, work out what involvement will cost and write the involvement sections of your application.
Sam on your team as a researcher with lived experience: co-applicant, or PPIE lead on the funded project.
A workshop for your team on patient relevance in practice. More on training and speeches
Help showing what involvement actually changed, reported to standards such as GRIPP2.
Track record
CRiB2 (Cognitive Remediation in Bipolar) · King’s College London
Lived-experience input helped shift the primary outcome to psychosocial functioning (FAST).
Protocol: BMC Psychiatry, 2023. doi:10.1186/s12888-023-05327-1. ISRCTN10362331.
Maudsley Charity · King’s College London
Co-applicant and Research PPIE Lead on a Maudsley Charity grant on recognising and managing bipolar disorder in psychosis pathways.
Related protocol (not peer-reviewed): “Protocol for Diagnostic trajectories of patients receiving unspecified psychosis-spectrum diagnoses”, on ResearchGate.
Imperial College London
Sam has taught patient relevance at Imperial College London.
Read Sam’s Personal View on patient relevance, prepared for The Lancet Psychiatry.
The article
Sam’s Personal View sets out the case: why research should measure what matters to patients, and what it takes to build lived experience in properly. It was prepared for The Lancet Psychiatry. Start here if you want the thinking behind everything on this page.
Our approach
Involvement should keep a study measuring the outcomes that matter to patients. Get that right and the research becomes more valid as well as more meaningful.
We start at the idea stage, before the outcomes are fixed.
Our why-what-how-repeat method turns what matters to people into outcomes a study can measure.
They matter most. What they care about shapes what the study measures.
Acts as translator, turning what people say into questions and outcomes a study can use.
Makes sure the people involved represent the wider community, and helps the work reach it.
Why now
Any team can meet the requirement on paper. We help you make it change the study.
Asks applicants to describe public involvement on its application form.
Expects lived experience to be central to most mental health projects it funds.
Has asked authors to report lived-experience involvement since January 2024.
From the reference list of Sam’s Personal View on patient relevance, prepared for The Lancet Psychiatry.
Planning a grant?
Send us the funder, the deadline, the condition area and where you’re up to. The earlier you ask, the more it can shape the study.
