Patient experience evidence that holds up.
Teams need patient experience evidence that holds up, and one-off surveys only find what you thought to ask. We go back to the same people over time, in their own words, broken down by who said it.
What you can ask for
Patient experience evidence for NICE and value work.
What you get
Evidence in members' own words, by stage of the condition and background.
What it is
When a submission needs patient-reported burden, treatment acceptability or the experience of a particular group, we ask members through surveys, video diaries and voice notes and break the answers down by age, sex, ethnicity and deprivation. It's patient-reported data collected for your question, written up as an appendix or as briefing for patient experts. It isn't medical records data, and every report says so. A survey of 300 members with video diaries is quoted per piece of work.
Why the same people matter
We know what each member told us before, at their stage of the condition, and we ask them again. So a finding isn't a snapshot: you can see whether it holds, and for whom.
Regulators ask for it by name
In the UK, the MHRA says "the views of patients and patient representatives on benefit thresholds and risk ratios must be considered" (Rare therapies and UK regulatory considerations, November 2025), and its draft rare disease therapies framework (May 2026) makes patient-centred benefit-risk evaluation a founding principle. NICE invites patient and carer input on what living with a condition and its treatment is like. In Europe, the EMA's draft reflection paper on patient experience data (2025) says it can shape research questions, clinical trial design and endpoints.
How members tell us
Surveys, voice notes, video diaries, secure on-screen review, and live interviews and groups. Answers can start from what members have already told us, then go to members live.
How it starts
With a first piece of work on your question, quoted before anything starts.