1. EUPATI – European Patients Academy
Matthew May
EUPATI Programme Coordinator 05 May 2017

2. Mission: Empowering patients for their key role in health-related research
Competent authorities
Policy makers /Research Policy
Public
Research subject
Info provider
Advisor
Reviewer
Co-researcher
Driving force
Clinical Research
Research Ethics Committees
HTA agencies & committees

3. Patient involvement in medicines R&D
Protocol synopsis
Trial Steering Committee
Information to participants
Setting research priorities
Data MonitoringCommittee
Protocol design
Regulatory Affairs
Investigator meetings
High expertise in disease area required
Research
Priorities
Research design
and Planning
Research conduct and operations
Dissemination Communication Post-approval
Ethics Review
Study Reporting
Patient Information
Fundraising for research
Post-Study Communication
Medium expertise in disease area required
Informed Consent
Practical Considerations
Health
Technology Assessment

4. Public-Private-Partnership

5. EUPATI is addressing three audiences: The plan
EUPATI Patient Experts Training Course -- for expert patients
100 patient
experts
> users to date
2 courses done, 96 Fellows
Different approach
10 languages
English
EUPATI Educational Toolbox -- for patient advocates
patient advocates
English French German
Spanish Polish Italian Russian
EUPATI Internet Library -- for the health-interested public
individuals

6. Training leaders and creating a movement…

7. Two EUPATI Courses: Mission accomplished!
96 graduates completed the two courses
58 disease areas, 31 countries
3rd course to start in September 2017
Ingrid K

8. EUPATI Fellows has created influencers and leaders
Role
Before Course
EUPATI
Post Course
Member of patient organisation, not actively involved
17% 2%
Active role in a patient organisation
62%
71%
Leadership role in a patient organisation
Employee of a patient organisation
25%
23%
Volunteer role in a patient organisation
60%
67%
Presenting at conferences, workshops etc.
63%
83%
Advising a pharmaceutical company
13%
44%
Advising a regulatory agency
21%
42%
Advising a reimbursement agency 4% 8%
We have surveyed 52 of the 83 fellows that had completed the two courses until last week. If you compare their roles and activities before they started with our course, and after they completed the course, you can see that the course has encouraged them to take a leadership role in advocacy, and many of them have then started to advise pharma companies, regulatory agencies or HTA bodies as patient experts.
Source: The EUPATI Fellow Experience Poll, December 2016, 52 respondents (83 fellows)

9. Educating the wider community…

10. EUPATI Toolbox on Medicines R&D in 10 languages: Huge demand
In English, French, Italian, Spanish, German, Polish, Russian, Dutch (2 more to come)
> unique users from 149 countries (Jan 16 –May 2017)

11. EUPATI Toolbox on Medicines R&D: >3.500 content items
PowerPoints
Articles
The Toolbox is not just a medicines R&D Encyclopedia, it can be a tool for self-learning, or it can be a tool for teaching others, for trainers.
With this in mind, we’ve included tools in a range of formats, to try and suit as many audiences as possible. As a result you will find:
Articles [short description]
PowerPoints [short description]
Infographics [short description]
Factsheets [short description]
In the coming months, we hope to also add XX, XX, and XX.
Infographics
Fact sheets

12. EUPATI Mini-Course Starter Kits to run training days
Core set of PPT slides in specific area of patient involvement, plus links into EUPATI Toolbox, Case Studies + Trainers Manual!
Research design
and Planning
Research
Priorities
Research conduct and operations
Dissemination Communication Post-approval
Setting research priorities
Protocol synopsis
Protocol design
Trial Steering Committee
Information to participants
Data MonitoringCommittee
Investigator meetings
Regulatory Affairs
Fundraising for research
Practical Considerations
Patient Information
Informed Consent
Ethics Review
Study Reporting
Health
Technology Assessment
Post-Study Communication

13. EUPATI Mini-Course Starter Kits to run training days

14. Making sure it’s right…

15. EUPATI Production & Review Process: Don’t tell us we’ve made our lives easy!

16. Creating networks on the country level…

17. 18+ EUPATI National Platforms
bring all stakeholders together in countries
address educational needs in R&D
disseminate EUPATI’s training material to patient organisations
National platforms set up in AT, FR, DE, IE, IT, LU, MT, PL, ES, CH, UK, DK, SK, PT
Additional platform initiatives ongoing in BE, NO, GR, RO, SRB

18. Providing guidance and frameworks…

19. EUPATI Guidance for patient involvement and interaction – Why?
Overarching guidance on meaningful and ethical interaction is missing in many areas, especially in R&D
Existing codes/regulations hold mostly legal & ethical content, i.e. collaboration, communication, funding
Do not cover patient involvement in R&D
e.g. EFPIA, EATG code, PCWP framework, ECAB, EMA framework, HTAi
Language needs to be more directive towards patient involvement
Clear default statement that collaboration is allowed unless expressly forbidden

20. EUPATI Guidances are supporting patient interaction in R&D and regulatory affairs
Following an extensive consultation of the community, EUPATI has developed guidances for the interaction of patient organisations…
in industry-led R&D
with HTA bodies
in regulatory processes
in ethics committees
See EUPATI.eu > Resources > Guidances or

21. The “New” EUPATI Programme
EPF-led, permanent programme in the PPP spirit
3rd EUPATI Patient Expert Training Course
EUPATI Toolbox in all languages
“Mini-Course Starter Kits” and capacity building
Content updates (~10 Toolbox elements updated p.a.)
National Platforms
Evolution!
Jan G
IMI Call 1: not funded
2-stage application, consortium building
EUPATI IMI Project : patient-led PPP of patients, academia, NGOs and industry
EUPATI Programme
2010
2011
2012
2013
2014
2015
2016
2017
2018

22. A new PPP

23. Web:
as well as: