Future Health Summit - Dr Derick Mitchell - May 26th 2016
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This document discusses patient involvement in health research. It describes how patients can play key roles across various aspects of research including as public advisors, reviewers, co-researchers, and driving forces. It also outlines training programs for patients, such as those developed by IPPOSI and EUPATI, and how patients can be educated on clinical research, health technology assessment, and other areas. The goal is for patients to have objective knowledge about medical research and development processes to facilitate greater collaboration between patients and researchers.
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Future Health Summit - Dr Derick Mitchell - May 26th 2016
- 3. IPPOSI Members – Science (examples)
- 4. IPPOSI Members – Industry (examples)
- 5. 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
- 6. Patients have a key role in all aspects of health 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. 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
- 9. 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)
- 10. 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!
- 11. 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
- 12. 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.
- 13. EUPATI Toolbox – Content available Infographics Articles Fact sheets PowerPoints Videos www.eupati.eu
- 15. 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
- 16. Patients: Experts by Experience