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PATIENTS – SCIENCE – INDUSTRY
Derick MitchellJan 14th, 2016
My presentation today
• IPPOSI?
• Patient involvement in Research• Clinical Research / Clinical Trials
• Patient Training • European Patients Academy (EUPATI)
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”
IPPOSI Members – Patients’ Organisations
IPPOSI Members – Science
IPPOSI Members – Industry
Leadership
Other Stakeholders
Patient Experts
IPPOSI Funding
• Grant from Department of Health (via Health Research Board)
• Industry membership fee
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
Unique insights
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
What’s happening in Ireland?
Good Shepherd
“Involving patients in all your research from design to implementation increases your chances of success”
Graham Love, CEO Health Research Board
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
Conclusion
• Limited understanding of how one can participate • (i.e. donating blood/tissue, medical information)
• Ethical concerns
• Unnecessary Risk
Public information campaignclinicaltrials.ie
• 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
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
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)
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
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!
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.
2016 – Expert Patients on the road…..
April NUI Galway
June 21stUniv. of Limerick
October 4thDublin Castle
AugustBelfast (tbc)
JulyCork (tbc)
Where can we go from here?More Patient & Researcher TrainingMore Public Information Improve Research Environment
Take Home Messages
Patient involvement can improve research quality
Education + Training of both patients & researchers is key
@IPPOSI www.ipposi.ie