research managers jan 14th, 2016 - ipposi presentation
TRANSCRIPT
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PATIENTS – SCIENCE – INDUSTRY
Derick MitchellJan 14th, 2016
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My presentation today
• IPPOSI?
• Patient involvement in Research• Clinical Research / Clinical Trials
• Patient Training • European Patients Academy (EUPATI)
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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”
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IPPOSI Members – Patients’ Organisations
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IPPOSI Members – Science
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IPPOSI Members – Industry
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Leadership
Other Stakeholders
Patient Experts
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IPPOSI Funding
• Grant from Department of Health (via Health Research Board)
• Industry membership fee
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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
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Unique insights
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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
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What’s happening in Ireland?
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Good Shepherd
“Involving patients in all your research from design to implementation increases your chances of success”
Graham Love, CEO Health Research Board
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Clinical Trial Activity in Ireland?
*Including only open studies, excluding studies with unknown statusData Source: Clinicaltrials.Gov
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Irish public perception
Irish general public’s attitude towards clinical research,
Nov. 2009
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Conclusion
• Limited understanding of how one can participate • (i.e. donating blood/tissue, medical information)
• Ethical concerns
• Unnecessary Risk
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Public information campaignclinicaltrials.ie
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• 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
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Real solution? - The ‘Expert’ PatientIPPOSI 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
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EUPATI Patient ExpertsTraining Course
EUPATI develops patient educationtargeted towards different audiences
53+50patient experts
EUPATI Educational Toolbox
EUPATI Internet Library
English FrenchGermanSpanishPolishItalian Russian
English
Patientadvocates(12,000)
Health-‐interestedpublic(100,000)
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Three years of EUPATI: Much has been done! …
Reflection, consensus, dialogue, community building, Engagement at EUPATI workshops in Frankfurt, Barcelona, Rome, Warsaw, Dublin103 Patient Expert TraineesOnline Toolbox available in January 2016
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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!
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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.
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2016 – Expert Patients on the road…..
April NUI Galway
June 21stUniv. of Limerick
October 4thDublin Castle
AugustBelfast (tbc)
JulyCork (tbc)
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Where can we go from here?More Patient & Researcher TrainingMore Public Information Improve Research Environment
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Take Home Messages
Patient involvement can improve research quality
Education + Training of both patients & researchers is key
@IPPOSI www.ipposi.ie