EUPATI Launch Meeting, 27 March 2012 - Jan Geissler

1. The European Patients’ Academy
on Therapeutic Innovation
Jan Geissler
EUPATI Director, Germany

2. Window of opportunity in
accelerating medicines R&D
 Great challenges ahead: Personalized medicine,
translational medicine, increasing development cost,
pressure on healthcare budgets
 The regulatory and innovation environment is ready to
involve patients to effectively meet unmet needs

3. Unmet need of patient & public,
great willingness to contribute!
 Patients…
• seek up-to-date, credible, understandable information
about innovation in treatments
• are largely unaware about clinical trials, translational
research, personalized medicine, pharmacoeconomics,
their key role
 Patient advocates…
• like to advise on protocol design, informed consent,
ethical review, marketing authorization, value
assessment, health policy
• lack the education and training required to participate
as a partner in drug research and development
 FP7-funded PatientPartner project demonstrated
a clear need & willingness to contribute

4. A paradigm shift in empowering
patients on medicines R&D
 Launched Feb 2012, runs for 5 years,
29 consortium members,
IMI-funded
 will develop and disseminate
objective, credible,
correct and up-to-date public
knowledge about medicines
R&D

5. EUPATI: European Patients' Academy
on Therapeutic Innovation
IMI-funded EUPATI will
 develop and disseminate accessible, well-structured and
user-friendly information and education on medicines R&D
 build competencies among well informed patients and the
public about pharmaceutical R&D
 build expert capacity in patient advocates
 create the leading public library on patient information in
seven most common languages under public licensing
 establish a widely used, sustainable infrastructure for
objective, credible, correct and up-to-date knowledge
 facilitate patient involvement in R&D to support industry,
academia, authorities and ethics committees

6. Strong Consortium
 Led by pan-EU patient umbrella
organisations
 Strong impetus from key
academic partners and non-profit
organisations
 Key industry expertise in
medicines R&D

7. Ensuring Objectivity, Transparency
and Independence are vital
 Advisory bodies committed to ensure
independence, transparency, good
governance
• EMA, Swissmedic, MHRA, BfArM
• Key experts in bioethics, genetics, HTA,
economics, evidence based med,
patient advocacy
• Ethics Panel
 Ethical Framework, Code of Conduct:
• Ground rules for anonymity, confidentiality,
informed consent, social research, ethical
review, professional integrity, publication
ethics, transparency, independence and trust.

8. EUPATI in 2016:
What 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 at least 5 Regional Workshops
performed. Expert network established.

9. Get to know us!
Web:
www.patientsacademy.eu
Twitter: @eupatients
as well as: