Patient experience evidence for NICE and value work.
In members' own words, broken down by stage of the condition and background, from the same people over time.
What you'd use us for
- Patient-reported burden, treatment acceptability and the experience of particular groups, written up as an appendix or as briefing for patient experts.
- Ask our data first, to see what members have already told us about your condition.
"What does living with COPD cost people day to day, in time off work, travel and caring, and how does that differ by deprivation?"
What comes back
A survey of 150 to 300 members with COPD, built to match everyone who has it, with voice notes and video diaries for depth. Every finding is broken down by age, sex, ethnicity, deprivation and stage of the condition, in a dated, version-numbered report with its methods and limits, ready to describe in a submission.
What it is, and isn't
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.
Methods
How we collect and report patient experience evidence, so you can describe it in a submission and an assessor can check it.
How members are recruited
Members join through Equity Engine, our member platform, owned and run by Unwritten Health. We recruit by presenting Equity Engine at community hubs across the UK, attending health fairs and being in the community. Every new member goes through sign-up checks against bots and fake accounts, and counts as active only once they've finished onboarding. Members are paid for their time, never for their answers.
The sample
Members living with the condition. Conditions are self-declared, with qualifying questions, or screened to your stricter criteria if you need them. We build each group to match everyone who has the condition, using published data on who has it. Surveys typically reach 150 to 300 members, and detailed on-screen reviews around 40. Every report describes its sample: how many took part, and their breakdown by age, sex, ethnicity, deprivation, stage of the condition and where they live, set against everyone who has the condition. Where we're short of a group, the report says so.
How we ask
Questions are written with you for your evidence need, including any measures you specify. Surveys give scale; voice notes and video diaries give depth, in members' own words; live interviews go further where you need them. Members see what a task pays before they start.
How findings are reached
Survey answers are counted and broken down by age, sex, ethnicity, deprivation, stage of the condition and where people live. What members say in voice notes, video diaries and interviews is grouped into themes, and each theme is reported with how many raised it and who, alongside de-identified quotes. Recordings are never shared. Our AI is built only on what our members have told us: no synthetic patients and no outside data filling the gaps. Every answer links to the members' own answers it came from, and shows who gave them, so you can check it rather than trust it. It runs under Footnote, our own framework that sets what it may and may not do.
Limits
Conditions are self-declared, not confirmed from medical records. Members chose to join, so this isn't a random sample: findings describe the members who answered, set against everyone with the condition, rather than estimating rates for the whole population. It's patient-reported data collected for your question, not medical records data, and members are in the UK. Every report states these limits.
Over time, and citing it
The same members can be asked again, so you can see whether a finding holds, and for whom. Each report is dated and version-numbered, so it can be cited.