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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 acce...
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 Allian...
Roles, Infrastructures, Outcomes
Value of BBMRI involvement for IPPOSI
• Strategic + Economic value
• Formed collaborative partnerships and networks
• Tran...
Realising full potential of patient registries
• Current challenges are stark:
• Patient consent
• Data Management
• Gover...
Round-table with Secretary General
National Register of Health Identifiers
Privacy Impact Assessment
• Data Security, Privacy and Access
• Guidelines to outl...
Where can we go from here?
More Patient & Researcher TrainingMore Public Information Improve Research Environment
Real solution? - The ‘Expert’ Patient
IPPOSI Training for Members
• Clinical Research
• Health Technology Assessment
• Pha...
IPPOSI = Irish National
Platform
• Rachel Lynch, FibroIreland
• Damien Peelo, COPD Support Ireland
• Julie Power, Vasculit...
2016 – Expert Patients on the road…..
April 26th
NUI Galway
June 21st
Univ. of Limerick
October 4th
Dublin Castle
August
B...
Heart of Biobanking Ecosystem?
“Just because a system has
patient data at its core does
not mean it is patient-
centric”
J...
Thank you!
@IPPOSIwww.ipposi.ie
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Insight 2016 cork

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Biobanking from the patient perspective

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Insight 2016 cork

  1. 1. PATIENTS – SCIENCE – INDUSTRY Biobanking from the patient perspective Derick Mitchell Jan 7th, 2016
  2. 2. Heart of Biobanking Ecosystem? “People perform better when they are informed better” Dave deBronkart @EpatientDave
  3. 3. My presentation today • IPPOSI? • Patient Advocate Perspective on Biobanking • ‘Patient Experts’
  4. 4. 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”
  5. 5. Leadership Other Stakeholders Patient Experts
  6. 6. IPPOSI Funding • Grant from Department of Health (via Health Research Board) • Industry membership fee
  7. 7. Irish public perception Irish general public’s attitude towards clinical research, Nov. 2009
  8. 8. EU Public Perception Source: Eurobarometer: Europeans and Biotechnology in 2010: Winds of change?
  9. 9. IPPOSI and BBMRI • IPPOSI managed BBMRI Stakeholder’s Forum for the preparatory phase (FP7- BBMRI-PP) 2008-2011
  10. 10. “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
  11. 11. Roles, Infrastructures, Outcomes
  12. 12. 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
  13. 13. 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)
  14. 14. Round-table with Secretary General
  15. 15. National Register of Health Identifiers Privacy Impact Assessment • Data Security, Privacy and Access • Guidelines to outline responsibilities
  16. 16. Where can we go from here? More Patient & Researcher TrainingMore Public Information Improve Research Environment
  17. 17. 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
  18. 18. 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.
  19. 19. 2016 – Expert Patients on the road….. April 26th NUI Galway June 21st Univ. of Limerick October 4th Dublin Castle August Belfast (tbc) Cork?
  20. 20. Heart of Biobanking Ecosystem? “Just because a system has patient data at its core does not mean it is patient- centric” Jane Grimson
  21. 21. Thank you! @IPPOSIwww.ipposi.ie

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