Research managers jan 14th, 2016 - ipposi presentation
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The document discusses the role of IPPOSI, a unique partnership that includes patient groups, industry, and science to enhance patient involvement in research and access to innovative therapies. It emphasizes the need for education and training for both patients and researchers to improve the quality of clinical trials, while highlighting successful initiatives in Ireland. The presentation outlines various programs aimed at increasing patient engagement in the clinical research process.
Research managers jan 14th, 2016 - ipposi presentation
- 1. PATIENTS – SCIENCE – INDUSTRY Derick Mitchell Jan 14th, 2016
- 2. My presentation today • IPPOSI? • Patient involvement in Research • Clinical Research / Clinical Trials • Patient Training • European Patients Academy (EUPATI)
- 3. IPPOSI? Who?IPPOSI Unique partnership of Patient Groups, Industry and Science Expedite the development of and patient access to innovative therapies Priorities • Bring a patient perspective to clinical research, connected health, health economics • Actively influence policy that impacts on research + access to innovative therapies “Putting patients in policy and medicines development”
- 4. IPPOSI Members – Patients’ Organisations
- 5. IPPOSI Members – Science
- 6. IPPOSI Members – Industry
- 8. IPPOSI Funding • Grant from Department of Health (via Health Research Board) • Industry membership fee
- 9. Patient involvement in research Distinct from: • Raising awareness • Sharing knowledge • Creating a dialogue with the public • Recruitment of people as participants in research Active partnership between members of the public and researchers in the research process
- 10. Unique insights
- 11. Patient involvement in research can: • Provide a different perspective • Make language + content of information clear and accessible • Help to ensure study methods are acceptable and sensitive • Help ensure that research uses outcomes that are important to the public • Help increase participation in research
- 12. What’s happening in Ireland?
- 13. Good Shepherd “Involving patients in all your research from design to implementation increases your chances of success” Graham Love, CEO Health Research Board
- 14. Clinical Trial Activity in Ireland? *Including only open studies, excluding studies with unknown status Data Source: Clinicaltrials.Gov 14
- 15. Irish public perception Irish general public’s attitude towards clinical research, Nov. 2009
- 16. Conclusion • Limited understanding of how one can participate • (i.e. donating blood/tissue, medical information) • Ethical concerns • Unnecessary Risk
- 18. • Patient‘s organisations have unique insights in “real life“ and “real needs“ of patients: • Clinical trial design • Priority setting • Research policy • Training required to get the expertise required to contribute to research & development projects Building a new environment for research 18
- 19. Real solution? - The ‘Expert’ Patient IPPOSI Training for Members • Clinical Research • Health Technology Assessment • Pharmaceutical Code of Practices • Health Informatics (coming soon!) IMI-EUPATI produces Expert Patients on Medicines R&D • Training & Education • Disseminates through national platforms
- 20. EUPATI Patient Experts Training Course EUPATI develops patient education targeted towards different audiences 53+50 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)
- 21. Three years of EUPATI: Much has been done! … Reflection, consensus, dialogue, community building, Engagement at EUPATI workshops in Frankfurt, Barcelona, Rome, Warsaw, Dublin 103 Patient Expert Trainees Online Toolbox available in January 2016
- 22. Areas covered by the Patients’ Academy 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 and health technology assessment 5. Design and objectives of clinical trials (& roles of stakeholders) 6. Patients roles & responsibilities in medicines development …and NOT: develop indication- or therapy-specific information!
- 23. IPPOSI = Irish National 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 8 Irish Trainees 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.
- 24. 2016 – Expert Patients on the road….. April NUI Galway June 21st Univ. of Limerick October 4th Dublin Castle August Belfast (tbc) July Cork (tbc)
- 25. Where can we go from here? More Patient & Researcher TrainingMore Public Information Improve Research Environment
- 26. Take Home Messages Patient involvement can improve research quality Education + Training of both patients & researchers is key @IPPOSI www.ipposi.ie