NCPE Annual Training Day - March 10th 2016 - Derick Mitchell
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IPPOSI Chief Executive outlines the role of IPPOSI in terms of medicines development
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NCPE Annual Training Day - March 10th 2016 - Derick Mitchell
- 1. March 11th, 2016 PATIENTS – SCIENCE – INDUSTRY NCPE Training Course on HTA Derick Mitchell
- 2. Patient Involvement in Healthcare Decision-making Why? Who? When? How?
- 3. IPPOSI? Who?IPPOSI Mission We expedite development of and patient access to innovative therapies Unique partnership of Patient Groups, Industry and Science 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. Partnership Approach Other Stakeholders Patient Experts • Encourage open, constructive dialogue and interaction • Highlight value that patients can bring • Develop new opportunities for patients to influence decision-making
- 5. IPPOSI Funding • Grant from Department of Health (via Health Research Board) • Industry membership fee
- 6. Goals for patient involvement in HTA? • Democratic • Scientific • Instrumental • Developmental
- 7. IPPOSI Partnership with HIQA + NCPE • HIQA have patient involvement on the advisory board of individual HTAs • Annual HTA Training for patients through IPPOSI • List of products under NCPE rapid review available on IPPOSI website • Irish patient groups exploring measuring patient outcomes with the NCPE
- 8. Annual HTA & Decision Training 2016: “incorporating the patient perspective”
- 9. Submission of patient org information
- 10. Other jurisdictions? • European Patients Forum Survey • SMC • Patient Group Partners • Submission Form • Patient Org. Registration Form • Guidance (Good Example) • Public Involvement Network Advisory Group
- 11. Values and Quality Standards for PPI • HIQA • Guidelines for Stakeholder Engagement in HTA • EUnetHTA • Stakeholder Forum • HTAi • Vision: that patient and citizen perspectives improve HTA http://www.htai.org/interest-groups/patient-and-citizen- involvement/pcig-resources/hta-resources.html
- 12. Irish Educational Platform • John Dowling, Men Against Cancer • Caitriona Dunne, Fighting Blindness • Joan Jordan, MS Ireland • Katie Murphy, CF Ireland • Rachel Lynch, FibroIreland • Damien Peelo, COPD Support Ireland • Julie Power, Vasculitis Ireland Awareness • Sharon Thompson, Rare Dis. + Palliative care 8 Irish Trainees The 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. Why?, Who?, When?, How? EXAMPLES: • In clinical trial methodology / outcomes • Incorporate patient preferences in QALY • Adjusting clinical / review criteria • In between NCPE recommendation + HSE decision
- 14. Take Home Messages • Develop clear policies for PPI • Early & Ongoing Involvement • Need Education/Training for all @IPPOSI www.ipposi.ie
Editor's Notes
- There is little resistance to the fact that patients should be involved, but how, at what stage, and why?
- Foster the early engagement of patient organisations in clinical trials to integrate quality of life, social and ethical information into the evidence-collection for HTA agencies. Involve patient organisations in gathering data post-marketing authorisation to inform long-term relative effectiveness assessments.