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PATIENTS – SCIENCE – INDUSTRY
Biobanking from the patient perspective
Derick Mitchell
Jan 7th, 2016
Heart of Biobanking Ecosystem?
“People perform better when they are informed better”
Dave deBronkart
@EpatientDave
My presentation today
• IPPOSI?
• Patient Advocate Perspective on Biobanking
• ‘Patient Experts’
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”
Leadership
Other Stakeholders
Patient
Experts
IPPOSI Funding
• Grant from Department of Health
(via Health Research Board)
• Industry membership fee
Irish public perception
Irish general public’s attitude towards clinical research,
Nov. 2009
EU Public Perception
Source: Eurobarometer: Europeans and Biotechnology in 2010: Winds of change?
IPPOSI and BBMRI
• IPPOSI managed BBMRI Stakeholder’s Forum for the preparatory phase (FP7-BBMRI-PP) 2008-2011
“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
Roles, Infrastructures, Outcomes
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
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)
Round-table with Secretary General
National Register of Health Identifiers
Privacy Impact Assessment
• Data Security, Privacy and Access
• Guidelines to outline responsibilities
Where can we go from here?
More Patient & Researcher Training More Public Information Improve Research Environment
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
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 26th NUI Galway
June 21st Univ. of Limerick
October 4th Dublin Castle
August Belfast (tbc)
Cork?
Heart of Biobanking Ecosystem?
“Just because a system has patient data at its core
does not mean it is patient-centric”
Jane Grimson
Thank you!
@IPPOSI www.ipposi.ie
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