This document discusses the role of patients in science, industry, and research. It describes IPPOSI, a public-private partnership between patients, science, and industry in Ireland. IPPOSI members include patient advocacy groups and conduct various patient-led activities. The document also discusses EUPATI, a project to educate patients and the public about medicines research and development through training courses and an online toolbox. EUPATI aims to facilitate greater patient involvement in clinical research and regulatory processes.

1. PATIENTS – SCIENCE – INDUSTRY
April 27th, 2016
Patients: Experts by Experience

3. IPPOSI Members

4. IPPOSI Members – Science (examples)

5. IPPOSI Members – Industry (examples)

6. Public-Private Partnership
• Grant from Department of Health
(via Health Research Board)
• Industry membership fee

7. 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

8. 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
design
Informed
consent
Ethical
review
Value
assessment
Health
policy

9. Unique insights

10. 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

11. EUPATI
Patient
Experts
Training
Course
EUPATI develops patient education
targeted towards different audiences
100
patient
experts
EUPATI
Educational
Toolbox
EUPATI
Internet
Library
English
French
German
Spanish
Polish
Italian
Russian
English
Patient
advocates
(12,000)
Health-­‐
interested
public
(100,000)

12. 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
…and NOT:
develop indication-­‐ ortherapy-­‐specific information!

13. 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

14. 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.

15. EUPATI Toolbox – Content available
Infographics
Articles
Fact
sheets
PowerPoints
Videos
www.eupati.eu

16. Education Platforms
EUPATI
Austria
Belgium
France
Germany
Ireland
Italy
Luxem-­‐
bourg
Malta
Poland
Spain
Switz-­‐
erland
UK
Denmark
Greece
Nether
lands
Portugal
Serbia
Slovakia

17. 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

18. Patients: Experts by Experience

19. Who am I?
Carer
Computer
Science
Graduate
Patient
Advocate
EUPATI
Trainee
Clinical
Trial
Participant
Manager
Global
Traveller
Patient
MS
Ireland
Blogger