PATIENT ACCESS +

EMPOWERMENT

IPPOSI Members

Over 100 Patient Organisations

IPPOSI Members – Science (examples)

250+ Scientific / Academic

IPPOSI Members – Industry (examples)

17 Companies

Patient-led activities

Health HacksWorkshopsConferencesConsultationsRound-tablesWorking GroupsTraining Days

Rare DiseaseseHealthClinical ResearchHealth InformationHealth EconomicsPatient RegistriesBiobanking

Patients have a key role in all aspects of health-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 consent

Ethical reviewValue assessment

Health policy

Are there enough patient

advocates to engage in R&D?

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 education targeted towards different audiences

100patient experts

EUPATI Educational Toolbox

EUPATI Internet Library

English FrenchGermanSpanishPolishItalian Russian

English

Patientadvocates(12,000)

Health-interestedpublic(100,000)

EUPATI contributing to paradigm shift

Key Objectives:

1. Develop and disseminate objective, 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

…and NOT: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