ppi conference galway - dr derick mitchell - april 27th 2016
TRANSCRIPT
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PATIENTS – SCIENCE – INDUSTRY
April 27th, 2016
Patients: Experts by Experience
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IPPOSI Members
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IPPOSI Members – Science (examples)
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IPPOSI Members – Industry (examples)
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Public-Private Partnership
• Grant from Department of Health (via Health Research Board)
• Industry membership fee
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Patient-led activities
Health Hacks
Workshops
Conferences
Consultations
Round-tables
Working Groups
Training Days
Rare Diseases
eHealth
Clinical Research
Health Information
Health Economics
Patient Registries
Biobanking
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Patients have a key role in all aspects ofhealth-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 consentEthical review
Value assessment Health policy
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Unique insights
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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
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EUPATI Patient ExpertsTraining Course
EUPATI develops patient educationtargeted towards different audiences
100patient experts
EUPATI Educational Toolbox
EUPATI Internet Library
English FrenchGermanSpanishPolishItalian Russian
English
Patientadvocates(12,000)
Health-‐interestedpublic(100,000)
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EUPATI objectives directly contributing to paradigm shift
Key objectives:
1. Develop and disseminateobjective, 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
…andNOT:develop indication-‐ or therapy-‐specific information!
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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
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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.
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EUPATI Toolbox – Content available
Infographics
Articles
Fact sheets
PowerPoints
Videos
www.eupati.eu
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Education Platforms
EUPATI
AustriaBelgium
France
Germany
Ireland
ItalyLuxem-‐bourg
Malta
Poland
Spain
Switz-‐erland
UKDenmark
Greece
Netherlands
Portugal
Serbia
Slovakia
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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
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Patients: Experts by Experience
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Who am I?
Carer
Computer Science Graduate
Patient Advocate
EUPATI Trainee
Clinical Trial Participant
Manager
Global Traveller
PatientMS Ireland Blogger
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