For pharma and life-science companies
Work with patient organisations, on their terms
Patient input comes through patient organisations, under a written agreement, at fair market value, with public disclosure where required. Patient Universe is the shared infrastructure that keeps that work organised and documented.
EU-hosted · Built for GDPR · Non-promotional · Patient organisations stay independent
- Patient input comes through patient organisations, never through direct access to patients.
- Every collaboration runs under a written agreement, at fair market value, with public disclosure where required.
- Your company has no access to member data or member lists.
Working with patient organisations takes care
Companies want patient input earlier and more often. Doing that well, and within the codes, involves many steps.
Coordination takes time
Requests, replies, briefings and follow-up with patient organisations are spread across many e-mails.
Spreadsheets and inboxes
Agreements, consent, availability and compensation are tracked in separate files and threads.
Compliance must be right
Written agreements, fair market value and disclosure must be correct each time, and every review round adds time.
Input gets lost
What patients shared in one project is not easy to build on in the next.
Patient organisations have limited capacity
The same few patient advocates receive most requests, and organisations have little time to coordinate.
Patients want clarity
Unclear briefings, slow compensation and no feedback on how input was used make people less willing to take part again.
Coordination timethat your team could spend on the content.
Compliance riskwhen agreements, consent and compensation live in different places.
Lost insightwhen there is no shared record of earlier collaborations.
One place to work with patient organisations
Patient Universe turns collaboration with patient organisations into a clear, documented workflow that the patient organisation co-governs.
Hear from patients through their organisations
Share a non-promotional request with patient organisations. They decide whether and how to pass it on to their members, who choose to take part.
Everything in one documented flow
Written agreement, intake, e-consent, confidentiality, scheduling and fair-market-value compensation as agreed in writing are handled in one place, with an audit trail.
A consented network the organisation co-governs
People who want to take part again can join a consented network that the patient organisation co-governs. They can leave at any time.
How it works
- 1
Request
Describe your project in a clear, non-promotional request.
- 2
Agreement
Agree scope, compensation and disclosure in writing with the patient organisation.
- 3
Invitation
The patient organisation invites its members on its own terms.
- 4
Selection
Participants are selected against agreed criteria, with the organisation involved.
- 5
Informed consent
Participants sign e-consent and confidentiality online.
- 6
Assignment
Run the advisory board, workshop, interviews or material review.
- 7
Compensation
Fair-market-value compensation as agreed in writing is tracked and confirmed.
- 8
Feedback
Participants and the organisation hear how their input was used.
Every step is logged, so it is clear who agreed to what, and when.
Ways to work together
Single assignments
For advisory boards, material reviews, co-creation workshops, focus groups or user testing.
- A dedicated project space
- Ready-made request, intake and consent forms
- Fee per assignment
- Participants decide whether to be contacted again
Partnership programme
For an ongoing collaboration with one or more patient organisations.
- A consented network co-governed by the patient organisation
- Announcements and events shared by the organisation
- New requests go through the organisation; members choose to take part
- Activity overview and yearly reporting
Run it yourself, or with Esperity
| Self-managed | Managed by Esperity | |
|---|---|---|
| Who runs the workflow | Your team, using the platform | Esperity's patient engagement team |
| Platform, forms, e-consent, overview | ✓ | ✓ |
| Contact with patient organisations | You | Esperity |
| Selection and intake calls, with the organisation | You | Esperity |
| Consent follow-up and participant logistics | You | Esperity |
| Compensation administration | Tracked in the platform | Esperity |
| Project report | Overview | Full report |
Optional services: Scoping, assignment materials and pre-reads, interview guides, individual interviews, survey design, facilitation of advisory boards and workshops, insights reports, support with your internal compliance review.
Compliance
Written agreement
Every collaboration with a patient organisation or individual is set out in a written agreement before work starts.
Fair market value
Compensation is set at fair market value, as agreed in writing, and tracked per participant.
EFPIA and national codes
Designed to support the EFPIA codes and national codes such as mdeon and beTransparent in Belgium. Codes differ per country.
Public disclosure
Records support public disclosure of transfers of value where required.
Independence
Patient organisations keep their independence and full control of their members and communities.
Non-promotional
Calls, requests and community content never contain product information.
No access to member data
Your company has no access to member data or member lists.
EU-hosted
Explicit consent, encryption of sensitive data and strict separation per company.
Why Esperity
Esperity works on the patient side of healthcare, with patient organisations, scientific societies and industry across Europe. We build patient communities and patient education, and we organise patient engagement projects such as advisory boards. Patient Universe brings that work together in one platform.
Costs
A one-off setup, then a fee per assignment or a yearly programme licence, self-managed or managed by Esperity. Participant costs such as fair-market-value compensation and travel are separate and passed through at cost.