Ask the people with lived experience of the condition, before it's final.
Protocols, consent forms and products are often finalised before people with the condition have had a real say. Patient involvement puts your question, document or product in front of members who live with the condition, before it's final, and shows you who said what.
What you can ask for
What living with the condition is like, from before diagnosis to years in. Unmet need. Reviews of protocols, consent forms, materials and products.
What you get
Findings broken down by who said them, and a report of what changed and what didn't.
How it works
Most research still can't show what patients changed.
Patient and public involvement (PPI) groups do good work with very little. The problem is scale: a group of ten can't tell you how a thousand people with the condition would read your information sheet, and it can't be broken down by age, ethnicity or deprivation to show who said what.
And a lot of research still goes ahead without any involvement at all. When the Health Research Authority checked 398 applications given a favourable ethics opinion in 2023, about a quarter hadn't involved the public at all. Clinical trials were less likely to have involved people than other research, and commercial research less likely than non-commercial.
The HRA expects public involvement in all research. Participant information developed without it "will not normally receive a favourable opinion" from an NHS ethics committee.
About 1 in 4 research applications approved in 2023 hadn't involved the public at all.
Sources: Health Research Authority, Public involvement in health and social care research in the UK: report 2023; HRA public involvement guidance.
Tell us what and who
Send us what you want shaped: a question, a protocol synopsis, a participant information sheet, your patient recruitment strategy or site selection plan, an app prototype, a device leaflet, a website. Tell us who it's for.
For recruitment and site selection, we show you where people with the condition live, from the first part of members' postcodes, and ask them what would make taking part possible: travel, time off work, childcare, how far is too far.
We start with a free panel count, the same day: how many people like that we hold, and how they break down.
Ask our data first
Every member has told us about their condition, their treatment and how it affects daily life. Our AI answers only from that: 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. Some questions are answered there straight away, before anyone is asked anything new. How it works
Then ask members live
We choose members to match everyone who has the condition, or your own target population. If you need a group over-represented, for example people whose symptoms show differently on darker skin, we build to that and say so in the report.
Then we go deeper than a survey can. A survey is fixed: it only finds what you thought to ask. So alongside surveys, members keep video diaries and send voice notes, telling us in their own words what a bad week with the condition looks like, where your information sheet lost them, or how they actually use an inhaler or an app at home. That's where the things that fall through the cracks come up: the hesitation, the workarounds, the worry nobody thought to ask about. They're often the ones that matter most.
Surveys can go to hundreds of members. Simple questions come back in hours, complex ones in days. Every answer, written or recorded, is tagged with who gave it, so you can see whether a point came from one group or from everyone.
We never share the recordings themselves. You get what we found in them: the themes, how many members raised each one and who, and de-identified quotes.
If your condition isn't one we count yet, tell us the condition and where your UK sites are, and we'll recruit people who live with it near them, and show you the first count within a month.
We put your material in front of them
For documents and products, members review your material inside our platform. It's never sent to them: download is blocked, browser screenshots are blocked, and the confidentiality agreement every member signs covers photographing the screen. Material is taken down when the work ends. They answer set questions and comment point by point. If you need to go deeper, we add one-to-one interviews.
You decide what changes
We send you what members raised, point by point, with how many raised it and who. You decide what to change and what not to, and tell us why for anything you don't change. If you want, members see the revised version and tell us whether your changes answer their points.
You get the report
What was asked, who answered and their breakdown, every point raised, what you changed, what you didn't and why. Nobody in it can be identified. Members get a short summary of what changed because of them.
See a sample patient involvement reportWhat you need to give us
- The material, in whatever state it's in. Earlier is better.
- Who it's for.
- Anything you already know you can't change, so members are told up front.
- Your confidentiality wording, if you want members to sign it.
For academic trials units and NIHR researchers
Already have a PPI group? Keep it. A group of ten can't tell you how a thousand people with the condition would read your information sheet, or show whether a point comes from one group or from everyone. That's what our members add, alongside your group and your public co-applicant.
For NIHR applicants: the one-document step
Send one document, a lay summary or a draft information sheet. Ten members who live with the condition review it inside our platform. You get a short report: who they were, what they raised, what you changed. It's written for the involvement and inclusion sections of the application, and it says what it is: a consultation with members, to sit next to the involvement you describe elsewhere. It usually takes about ten working days from sending the document to receiving the report, and we tell you the exact number before you pay. Invoiced or paid by card.
For funded research: the advisory add-on
Members join your advisory or steering group as named, ongoing contributors, with their consent, paid in line with NIHR's rate for public involvement for the life of the research. We recruit, brief and support them; you work with them as you would any public contributor. That's involvement in the sense the Standards mean, and it's the rung most PPI leads asked us for.
Costing
Universities usually can't recover VAT, so every quote we send shows the figure with VAT as well as without. We say that here so nobody finds it on the invoice.
Who uses it
Clinical development and recruitment
Protocols, information sheets and invitations, before they're final.
Patient insight
What living with the condition is like, by stage.
Medical affairs
Education materials checked.
Medtech and digital health
IFUs, packaging, prototypes and DTAC evidence.
NHS teams
Equality impact assessments.
Suppliers to the NHS
Evidence for tenders.
Recruiting too? The same members can be referred to your clinical trial once it's recruiting, and we follow every referral through. Clinical trial recruitment in the UK