PATIENTS – SCIENCE – INDUSTRY

Biobanking from the patient perspective

Derick MitchellJan 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?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”

Leadership

Consensus

Inform

Scien

ce

Industry

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) Need national oversight / centre of

excellence

Round-table with Secretary General

Patients must believe their data is secure

National Register of Health Identifiers

Privacy Impact Assessment

• Data Security, Privacy and Access

• Guidelines to outline responsibilitiesImportance of good, clear communication

Where can we go from here?More Patient & Researcher TrainingMore Public Information Improve Research Environment

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

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

AugustBelfast (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!

@IPPOSIwww.ipposi.ie