Patient Co-Creation Council
Twenty-two patients and caregivers with veto power over how this experience speaks and behaves. They get paid for their time, and they use it.
- Members
- 22 patients and caregivers
- Meets
- Four times a year, paid
- Term
- 18 months, renewable once
- Applications
- Open twice a year
What changed because they said so
Four examples where council feedback rewrote something we'd already shipped or were about to.
The question we were asking backwards
What was wrong
Every form opened by asking for a diagnosis. Caregivers told the council they'd bail out at the first question because none of the answers were theirs.
What the council did
The council rewrote the opening as an optional 'who is this for' toggle, with plain language that changes throughout the experience.
What happened
Caregiver drop-off on the first screen fell by roughly two thirds in council testing rounds.
I'm not the patient and I'm not nobody. Give me a door that admits I exist.
Council member, caregiver seat Money before medicine
What was wrong
Cost and coverage help sat three levels deep under 'Resources,' behind clinical content nobody was reading first.
What the council did
Council members mapped their own first 72 hours after diagnosis and insisted cost be the first thing offered, not the last.
What happened
Financial assistance pre-checks are now reachable in one tap from every screen, including mid-conversation.
The first night, I wasn't googling the drug. I was googling whether we'd lose the house.
Council member, patient seat Stop hiding the phone number
What was wrong
An earlier draft put the assistant front and center and tucked human contact into a footer link.
What the council did
The council vetoed it. Human access became a persistent, equally-weighted rail with live availability and an always-available call back.
What happened
People now reach a specialist without proving themselves to a chatbot first — and after hours they can book a time instead of hitting a dead end.
If a person is available, say so where I can see it. Don't make me earn them.
Council member, patient seat Words that sound like a human wrote them
What was wrong
Copy was full of 'eligibility determination,' 'patient journey,' and 'adherence support.'
What the council did
The council holds veto power over language. Every screen is read aloud in session; anything that sounds like a brochure gets rewritten on the spot.
What happened
Reading level dropped to roughly 7th grade across the experience without losing any accuracy.
Nobody has ever described the worst year of their life as a journey.
Council member, caregiver seat
Who sits on it
Seats are held for lived experience, not credentials. No medical or professional background required.
- Living with a diagnosis now
- Post-treatment or in remission
- Family caregiver
- Rural or long distance to care
- Uninsured or underinsured experience
- Diagnosed under 40
Members meet four times a year for two hours, are paid for their time, and can bring a caregiver or interpreter to any session.
Concept prototype. Council details and case studies are illustrative placeholders.