Published on May 19, 2016
1. PATIENTS – SCIENCE – INDUSTRY April 27th, 2016 Patients: Experts by Experience
2. IPPOSI Members
3. IPPOSI Members – Science (examples)
4. IPPOSI Members – Industry (examples)
5. Public-Private Partnership • Grant from Department of Health (via Health Research Board) • Industry membership fee
6. 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
7. 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 design Informed consent Ethical review Value assessment Health policy
8. Unique insights
9. 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
10. EUPATI Patient Experts Training Course EUPATI develops patient education targeted towards different audiences 100 patient experts EUPATI Educational Toolbox EUPATI Internet Library English French German Spanish Polish Italian Russian English Patient advocates (12,000) Health-‐ interested public (100,000)
11. 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 …and NOT: develop indication-‐ ortherapy-‐specific information!
12. 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
13. 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.
14. EUPATI Toolbox – Content available Infographics Articles Fact sheets PowerPoints Videos www.eupati.eu
15. Education Platforms EUPATI Austria Belgium France Germany Ireland Italy Luxem-‐ bourg Malta Poland Spain Switz-‐ erland UK Denmark Greece Nether lands Portugal Serbia Slovakia
16. 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
17. Patients: Experts by Experience
18. Who am I? Carer Computer Science Graduate Patient Advocate EUPATI Trainee Clinical Trial Participant Manager Global Traveller Patient MS Ireland Blogger
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