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