Bringing patient education to the national +
disease-specific level…
Derick Mitchell
Chief Executive, IPPOSI
Why?
Impact of EUPATI felt on multiple levels on medicines R&D in Europe
Need training + education at the national level with material relevant to the national or regional context
Stakeholders in medicines R&D (patient communities, academia, industry and public authorities) need to become more engaged and encouraged to support patient training initiatives within their country
IPPOSI? Who?IPPOSI
A patient-led organisation
that works with patients,
government, industry,
& science to put patients at
the heart of health innovation
Irish Platform for Patient Organisations, Science & Industry
www.ipposi.ie
@IPPOSI
Some of our resources…
INFORM ENGAGE EMPOWER
IPPOSI in EUPATI
Provides the public-private
partnership model for EUPATI
Establishes ‘IPPOSI-like’
EUPATI National Platforms
across Europe
What is a EUPATI National Platform (ENP)?
Patient-led, national network of volunteers
Patients, academia, industry & other partners (government, regulatory, doctors, nurses, media)
Public-Private-Partnership Model
Executive Committee
Advisory Committee
Terms of Reference
EUPATI National Platforms
Bringing all stakeholders
together in countries
Address educational needs of patients+ lay public in R&D
Disseminate EUPATI material + resources
Raise public interest at national level
Identify faculty, logistics, support fornational –level training and education
EUPATI Fellows – our greatest asset!
■ ENPs working with EUPATI Fellows & Trainees■ to share their knowledge with others and to put their training into practice!
20142017 = Eighteen
Interest from Brazil,
Cyprus, Finland, Hungary,
Israel, Russia, Serbia,
Sweden and Turkey
EUPATI Countries
Legal Entity
ENP Network + Governance
Derick Mitchell, IE
Beatriz Silva-Lima, PT
Thierry Escudier, FR
Roald Nystad, NO
Sue Pavitt, UK
Rozalina Lapadatu, RO
Gemma Killeen, IPPOSI
1st AGM, June 2017, Berlin
EUPATI Countries 2017
Regional Groups
Education / Training opportunities
Leverage existing infrastructure, resources at national level
Translating Toolbox – www.eupati.eu
Tailored training initiatives on specific areas of Medicines R&D
• e.g. Train the Trainer
Replicating EUPATI-like training courses
• Both face-to-face and e-learning
EUPATI Mini-Course Starter Kitsto run training days
EUPATI Mini-Course Starter Kitsto run training days
Core set of PPT slides in specific area of patient involvement,plus links into EUPATI Toolbox, Case Studies + Trainers Manual!
Research design
and Planning
Research
Priorities
Research conduct and
operations
Dissemination Communication Post-approval
Setting researchpriorities
Protocol synopsis
Protocol design
Trial Steering Committee
Information to participants
Data MonitoringCommittee
Investigator meetings
Regulatory Affairs
Fundraising for research
Practical Considerations
Patient Information
Informed Consent
Ethics Review
Study Reporting
HealthTechnology Assessment
Post-Study Communication
Train-the-Trainer Event - June 2017
Taking the toolbox to national and disease specific levels
44 EUPATI Fellows and ENP members
Training with practical exercises
How to use a ‘starter kit’
EUPATI-like courses at national level
Pilot Irish Patient Education Programme
7 months – ends on March 21st, 2018
3 x 6-week Modules
Understanding Clinical Trials
Regulatory, Medicines Safety, PV
HTA Principles + Practices
Irish Education Partners
2 Universities, 1 Regulator, 1 HTA Agency
1 LMS website: www.patientsinvolved.ie
21 Patient Students
Synergies with ISPOR, ISPOR Chapters?
Pre-existing
ISPOR Central
ISPOR Italy – Rome
ISPOR Slovenia
ISPOR Serbia
Future?
Existing or New EUPATI Countries?
New Training + Education Initiatives?
Communication + Collaboration?
Identification of faculty, logistics?
Ensuring neutrality of national content?
Sustainability of national platform?
