PPI Conference Galway - Dr Derick Mitchell - April 27th 2016

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Information about PPI Conference Galway - Dr Derick Mitchell - April 27th 2016

Published on May 19, 2016

Author: ipposi

Source: slideshare.net

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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