PATIENTS – SCIENCE – INDUSTRY

April 27th, 2016

Patients: Experts by Experience

IPPOSI Members

IPPOSI Members – Science (examples)

IPPOSI Members – Industry (examples)

Public-Private Partnership

• Grant from Department of Health (via Health Research Board)

• Industry membership fee

Patient-led activities

Health Hacks

Workshops

Conferences

Consultations

Round-tables

Working Groups

Training Days

Rare Diseases

eHealth

Clinical Research

Health Information

Health Economics

Patient Registries

Biobanking

Patients have a key role in all aspects ofhealth-related research

Public

Research  Ethics  Committees

Competent  authorities

Policy makers/  Research  Policy

HTA  agencies&  committees

Research  subject

Info  provider

Advisor

Reviewer

Co-­‐researcher

Driving force

Clinical  Research

Research  designInformed  consentEthical  review

Value  assessment  Health  policy

Unique insights

Educated Patient Communities

IPPOSI Training for Members

• Clinical Research• Health Technology Assessment• eHealth (coming soon!)

IMI-EUPATI develops Patient Education on Medicines R&D

• Training & Education• Disseminates through national platforms

EUPATI  Patient  ExpertsTraining  Course

EUPATI develops patient educationtargeted towards different audiences

100patient  experts

EUPATI  Educational  Toolbox

EUPATI  Internet  Library

English  FrenchGermanSpanishPolishItalian  Russian

English  

Patientadvocates(12,000)

Health-­‐interestedpublic(100,000)

EUPATI objectives directly contributing to paradigm shift

Key  objectives:

1. Develop  and  disseminateobjective,  credible,  correct  and  up-­‐to-­‐date  public  knowledge  about  medicines  R&D

2. Build competencies  &  expert  capacity  among  patients  &  public

3. Facilitate  patient  involvement  in  R&D  to  collaborate  in  academic  research,  industry  research,  authorities  and  ethics  committees

…andNOT:develop indication-­‐ or therapy-­‐specific information!

Areas covered

1. Medicines development process from research to approval

2. Personalized and predictive medicine

3. Drug safety and risk/benefit assessment of medicines

4. Pharmaco-economics, health economics, health technology assessment

5. Design and objectives of clinical trials (& roles of stakeholders)

6. Patients roles & responsibilities in medicines development

EUPATI Toolbox – www.eupati.eu

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.

EUPATI  Toolbox  – Content  available

Infographics

Articles

Fact  sheets

PowerPoints

Videos

www.eupati.eu

Education Platforms

EUPATI

AustriaBelgium

France

Germany

Ireland

ItalyLuxem-­‐bourg

Malta

Poland

Spain

Switz-­‐erland

UKDenmark

Greece

Netherlands

Portugal  

Serbia  

Slovakia  

IPPOSI = Irish 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• Noirín O’Neill, General Advocate

9 Irish Trainees

Patients: Experts by Experience

Who am I?

Carer

Computer  Science  Graduate

Patient  Advocate

EUPATI  Trainee

Clinical  Trial  Participant

Manager

Global  Traveller

PatientMS  Ireland  Blogger