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PATIENT ACCESS +
EMPOWERMENT
IPPOSI Members
Over 100 Patient Organisations
IPPOSI Members – Science (examples)
250+ Scientific / Academic
IPPOSI Members – Industry (examples)
17 Companies
Patient-led activities
Health HacksWorkshopsConferencesConsultationsRound-tablesWorking GroupsTraining Days
Rare DiseaseseHealthClinical ResearchHealth InformationHealth EconomicsPatient RegistriesBiobanking
Patients have a key role in all aspects of health-related research
Public
Research Ethics Committees
Competent authorities
Policy makers/ Research
Policy
HTA agencies&
committees
Research subject
Info provider
Advisor
Reviewer
Co-researcher
Driving force
Clinical Research
Research designInformed consent
Ethical reviewValue assessment
Health policy
Are there enough patient
advocates to engage in R&D?
Unique insights
Educated Patient Communities
IPPOSI Training for Members
• Clinical Research• Health Technology Assessment• eHealth (coming soon!)
IMI-EUPATI develops Patient Education on Medicines R&D
• Training & Education• Disseminates through national platforms
EUPATI Patient ExpertsTraining Course
EUPATI develops patient education targeted towards different audiences
100patient experts
EUPATI Educational Toolbox
EUPATI Internet Library
English FrenchGermanSpanishPolishItalian Russian
English
Patientadvocates(12,000)
Health-interestedpublic(100,000)
EUPATI contributing to paradigm shift
Key Objectives:
1. Develop and disseminate objective, credible, correct and up-to-date public knowledge about medicines R&D
2. Build competencies & expert capacity among patients & public
3. Facilitate patient involvement in R&D to collaborate in academic research, industry research, authorities and ethics committees
…and NOT:develop indication- or therapy-specific information!
Areas covered
1. Medicines development process from research to approval
2. Personalized and predictive medicine
3. Drug safety and risk/benefit assessment of medicines
4. Pharmaco-economics, health economics, health technology assessment
5. Design and objectives of clinical trials (& roles of stakeholders)
6. Patients roles & responsibilities in medicines development
EUPATI Toolbox – www.eupati.eu
The EUPATI 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.
EUPATI Toolbox – Content available
Infographics
Articles
Fact sheets
PowerPoints
Videos
www.eupati.eu
Education Platforms
EUPATI
AustriaBelgium
France
Germany
Ireland
ItalyLuxem-bourg
Malta
Poland
Spain
Switz-erland
UKDenmark
Greece
Netherlands
Portugal
Serbia
Slovakia
IPPOSI = Irish Platform
• Rachel Lynch, FibroIreland• Damien Peelo, COPD Support Ireland • Julie Power, Vasculitis Ireland Awareness• Sharon Thompson, Rare Dis. + Palliative care• John Dowling, Men Against Cancer• Caitriona Dunne, Fighting Blindness• Joan Jordan, MS Ireland• Katie Murphy, CF Ireland• Noirín O’Neill, General Advocate
9 Irish Trainees
Patients: Experts by Experience