European Patients' Academy - Presentation at IMI Patient Focus Meeting on 12 June 2013, presented by Jan Geissler (@jangeissler), Director EUPATI (@EUPATIents) at the IMI's "Patient Focus" meeting, convening patient leaders from across Europe

1. Jan Geissler – EUPATI Director
http://www.patientsacademy.eu – jan@patientsacademy.eu
IMI Patient Focus Meeting, 12 June 2013
European Patients’ Academy
on Therapeutic Innovation
The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed
of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.

2. Medical landscape is changing
at a fast pace
Innovation transforms the lives of
patients with serious, lifelong conditions:
 Molecular targets/pathways
 Genome sequencing,
 Translational research
 Personalized medicine
• Small trial populations
• Biomarkers, companion diagnostics
 Need for post-marketing data
 Health Technology Assessment,
QoL, endpoints, comparators
 BUT long term pressure on health budgets
– here to stay
Window of
opportunity
 trial design
 relationship
between
researchers,
regulators,
industry,
patients
2

3. Public
Research Ethics
Committees
Competent
authorities
Policy makers
HTA agencies
& committees
Research subject
Info provider
Advisor
Reviewer
Co-researcher
Driving force
Clinical
Research
For patient-centric medicines R&D,
we need more trained patient advocates
Trial protocol
design, informed
consent, ethical
review, marketing
authorization, value
assessment, health policy

4. The Patients’ Academy: Paradigm shift in
empowering patients on medicines R&D
 Launched Feb ’12, runs for 5 years,
30 consortium members,
Funded by IMI JU
 will develop and disseminate
objective, credible,
correct and up-to-date public
knowledge about medicines
R&D
 will build competencies
& expert capacity among patients & public
 will facilitate patient involvement in R&D to collaborate in academic
research, industry research, authorities and ethics committees

5. Areas covered by
the European Patients’ Academy
Example: EUPATI Face2Face Training Courses
1. Discovery of Medicines & Planning of Medicines Development
2. Non-Clinical Testing and Pharmaceutical Development
3. Exploratory and Confirmatory Clinical Development
4. Clinical Trials
5. Regulatory Affairs, Medicinal product Safety, Pharmacovigilance
and Pharmaco-epidemiology
6. Health Technology Assessment and the
economics
…and NOT:
develop indication-
or therapy-specific
information!

6. Reflecting European diversity:
7 languages, 12 countries
 7 most frequently spoken languages:
English, French, German, Spanish, Polish,
Italian, Russian
 Serving 12 European countries
AT
BE
CH
DE
ES
FR
IT
IE
LU
MT
PL
UK

7. EUPATI Internet Library
EUPATI Educational Toolbox
EUPATI Training Programme
To bring this to life, EUPATI develops
education targeted at different levels
100
“expert”
patient
advocates
12.000
patient
advocates
100.000
individuals

8. Project led by 4 key pan-European
patient associations
◦ EUPATI Project Coordination
◦ >50 umbrella patient organisations.
◦ Linking national and regional patient
alliances
◦ >550 rare disease organisations in
>45 countries
◦ >100 members in over 30 countries
Additional
partners in other
patient
organisations
and "members
of members"
via
"EUPATI
Network"

9.  Led by pan-EU patient umbrella
groups. EPF coordinates.
 Strong impetus from key academic
partners and research organisations
 Industry expertise in medicines R&D,
IT, capacity building
 Advisory bodies & codes committed to
ensure independence and good
governance
• EMA, Swissmedic, MHRA, BfArM
• Bioethics, genetics, HTA, economics, evidence
based med., patient advocacy
• Ethics Panel
Working in partnership
with strong governance

10. EUPATI – achievements by end of 2016
Launched in 2012. First trainings in 2014. All languages in 2016.
By 2017 we will have achieved:
 EUPATI platform fully loaded with training, education, information
material in multiple languages
 EUPATI Patient Ambassador, Patient Journalist,
Train-the-Trainer Programme in place
 Good practice guideline for patient involvement released
 Annual Conferences and Regional Workshops performed.
Expert network established.

11. To address unmet needs and make
research patient-centric,
more patient advocates need
to be involved as partners in R&D.
EUPATI will help
to make that happen.

12. Thank you!
Web:
www.patientsacademy.eu
Twitter: @eupatients
as well as: