Download - Insight 2016 cork
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PATIENTS – SCIENCE – INDUSTRY
Biobanking from the patient perspective
Derick MitchellJan 7th, 2016
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Heart of Biobanking Ecosystem?
“People perform better when they are informed
better”
Dave deBronkart
@EpatientDave
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My presentation today
• IPPOSI?
• Patient Advocate Perspective on Biobanking
• ‘Patient Experts’
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IPPOSI? Who?IPPOSIUnique 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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Leadership
Consensus
Inform
Scien
ce
Industry
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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Irish public perception
Irish general public’s attitude towards clinical research,
Nov. 2009
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EU Public Perception
Source: Eurobarometer: Europeans and Biotechnology in 2010: Winds of change?
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IPPOSI and BBMRI• IPPOSI managed BBMRI Stakeholder’s Forum for the preparatory
phase (FP7-BBMRI-PP) 2008-2011
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“Basic Principles for Patient Participation”
Endorsed by European / National Patient Organisations:
• International Alliance of Patient Organisations (IAPO)• European Genetic Alliance Network (EGAN)• European Federation of Neurological Associations (EFNA)• Europa Donna – The European Breast Cancer Coaltion• European Network for Research on Alternating Hemiplegia (ENRAH)• Dutch Genetic Alliance (VSOP)• Genetic Alliance UK• European Organisation for Rare Diseases (EURORDIS)• European Cancer Patients Coalition (ECPC)• European Patients Forum (EPF)• Europa UOMO
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Roles, Infrastructures, Outcomes
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Value of BBMRI involvement for IPPOSI • Strategic + Economic value
• Formed collaborative partnerships and networks• Translated into long-term joint research + education initiatives• Targeting IMI / H2020 / Marie Curie calls
• Governance value• SF on steering committee for Prep. Phase - business plan, statutes • Patients a central part of BBMRI - setting the agenda, quality, minimum standards
• ‘National Policy’ value• Briefing Dept. of Health and biobanking community on progress• Patient Registries• Health Information• Data Protection• eHealth
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Realising full potential of patient registries• Current challenges are stark:
• Patient consent• Data Management• Governance• Cost of capturing data• Sustainability
• Under Health Info Bill, Minister will be able to insist that people mandatorily return to a limited number of gold standard registries
• 109 ‘national data collections’ (HIQA, 2014) Need national oversight / centre of
excellence
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Round-table with Secretary General
Patients must believe their data is secure
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National Register of Health Identifiers
Privacy Impact Assessment
• Data Security, Privacy and Access
• Guidelines to outline responsibilitiesImportance of good, clear communication
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Where can we go from here?More Patient & Researcher TrainingMore Public Information Improve Research Environment
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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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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 26th
NUI Galway
June 21st Univ. of Limerick
October 4th Dublin Castle
AugustBelfast (tbc)
Cork?
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Heart of Biobanking Ecosystem?
“Just because a system has patient data at its core does not mean it
is patient-centric”
Jane Grimson
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Thank you!
@IPPOSIwww.ipposi.ie