EUPATI National Platform Network AGM 2018
Berlin, 9 May, 9am - 4pm
Welcome
Beatriz Silva-Lima & Derick Mitchell
ENP Network Co-Chairs
Today’s Agenda
➢ Welcome and Introductions
➢ Session 1: EUPATI Central Update
➢ 11:15: Coffee
➢ Session 2: The Future of ENPs and the ENP Network
➢ 12:30: Lunch
➢ Session 3: How Can We Learn From Each Other?
➢ 16:00 Close
EUPATI Central Update
Session 1
EPF-EUPATI 2018 and Beyond
Radu Costin Ganescu
EPF Board
Matthew May
EUPATI Programme Coordinator
The European Patients’ Academy
(EUPATI)
Last 12 months in facts and numbers
3’307
630’831
52’776
216
54
432’089 (613)
6 8
– users on busiest day in April
2018
– total users since launch
– European users of most
used language
– country with the most users
EUPATI trainees in Cohort 3 –
–words in the Toolbox
(number of content pieces)
- ENP run webinars – new sessions developed for
Cohort 3 Event 1
– countries use the Toolbox
Evolving team
Matthew May Programme
Coordinator (EPF)
Ingrid Heyne Course
Coordinator (EFGCP)
????? Alumni Coordinator
Tamás Bereczky Communications
Coordinator (EATG)
Danielle Flores ProgrammeOfficer (EPF)
Gemma Killeen NLT/ENP
Coordinator (IPPOSI)
?????? Content Coordinator
Jan Geissler Futures Team Lead (EPF)
Evolving team
Matthew May Programme
Coordinator (EPF)
Ingrid Heyne Course
Coordinator (EFGCP)
Florian Klett Alumni
Coordinator (EUPATI Fellow)
Tamás Bereczky Communications
Coordinator (Leukanet)
?????
ProgrammeOfficer (EPF)
Gemma Killeen NLT/ENP
Coordinator (IPPOSI)
Joan Jordan Content
Coordinator (IPPOSI)
Jan Geissler Futures Team Lead (EPF)
EFOEUPATI
IMI project
3 objectives:• Sustainability
• Webplatform
• ENP Network
1st September 2018 –
31st August 2020
€365,242.50 in
IMI funding
13 project
partners
Ensuring the Future Of EUPATI
New kid on the block:IMI-PARADIGM
Focus: Patient Engagement
Duration: 1st March 2018 – 31st August 2020
“provide a unique framework that enables structured, effective, meaningful,
ethical, innovative, and sustainable patient engagement (PE) and demonstrates
the ‘return on the engagement’ for all players.”
Objectives:
• Needs and expectations
• Sustainability roadmap
• Maximum synergies
• Agreed metrics
• Systems-readiness
EUPATI sustainability – the story so far
Core mandate of the futures team: Jan Geissler, David Haerry, Wolf See,
Matthew May (programme perspective), Derick Mitchell (ENP perspective)
Meeting with EUPATI Steering Group June 7th for update and decisions
Elaborating 12 models identified as potential funding strategies to ensure
the future of EUPATI on the mid- and long-term
Initial decision on way forward expected in Q3 by Steering Group
Thank you for making EUPATI the success it is today
25,152Number of users we exceeded
our hosting plan by last month
National Platform Coordination Update
Gemma Killeen
EUPATI National Coordinator
National Platforms 2017/2018
ENP Network
AGM
Evolution of the ENP Network
Governance
Bring patients, academic and industry together to discuss patient education & involvement in medicines R&D.
Raise awareness of the important role of patients
Identify challenges and opportunities for joint action
ENP Network Governance
Derick Mitchell: Co-
Chair
Beatriz Silva-Lima: Co-Chair
Rozalina Lapadatu: Executive
Committee Member
Thierry Escudier: Executive
Committee Member
Sue Pavitt: Executive
Committee Member
Roald Nystad: Executive
Committee Member
Gemma Killeen: ENP Coordinator
Sustaining Partners Assembly
National Platforms Network Programme Management Futures Team Advisory Network
EUPATI Steering Group (includes 2 National Platform Representatives)
National Platform Network Executive Committee
National Platform Network (3 representatives from each ENP make up the National Platform Network)
Country ENP Country ENP Country ENP Country ENP Country ENP Country ENP
Governance
5 Executive
Committee
meetings
held 2 ENP Network
Representatives
at Steering Group
level
ENP Proposal
for the IMI
Exploitation Call Elections
held for new
Ex Co and
SGAGM
Planned and
developed content
for the ENP
Network Annual
AGM
ENP Annual AGM…
2017 ENP AGM
• We held our first ENP
AGM along with a
Capacity Building event
for EUPATI fellows
• Last year 39 representatives
attended from 17 different countries
2018 ENP AGM
• This year expanded to two events.
• One capacity building event to delve
deep into 4 key topics important to the
ENPs
• Secondly, our AGM to discuss updates
from a central level and also to focus on
the future sustainability of EUPATI and
the National Platforms.
• This year we have 48 representatives
from 20 countries
Evolution of ENP Network: ENP Countries…
Country Country
Austria Malta
Belgium Norway
Denmark Poland
France Portugal
Germany Romania
Greece Slovakia
Ireland Spain
Italy Switzerland
Luxembourg UK
EUPATI continues to expand …
Next up: Finland, Sweden, Cyprus, Turkey, Brazil
Further interest from: Russia, Hungary, Japan, Israel, Macedonia
18 Established EUPATI Countries
Evolution of the ENP Network: Regionalisation & Synergies…
Cultivating synergies:
◼ At the last AGM we developed key regional groups
◼ EUPATI ENPs have continued to work together over the last year
◼ Examples: Swiss, German & Austrian collaboration, French speaking collaboration, Nordic and Irish/UK collaboration.
◼ We have continued to build on the regional groups by refining the number of groups into 3 main regions.
◼ Regionalisation will progress under the EFO-EUPATI proposal.
Evolution of the ENP Network: Countries in action
Belgium
• First National Congress on Patient Involvement will be held on October 27 2018 in Brussels. Training will focus on clinical trial participation and ethics committees.
Ireland
• The first Irish Patient Education Programme came to an end on 12 March 2018. With 20 students completing the course.
Finland
• The EUPATI Finland website and activity plan will be launched in 22 May in an event hosted by a member of parliament Sari Raassina
Italy
• EUPATI Patient Expert Course in Italian is being finalized and will start in November 2018. It will last 9 months and will have 160 hours in e-learning and 60 face to face hours.
France
• France: ESOF 2018 - “Science in the City” and Patient Information/Involvement July 2018.
• 45 minute film about information needs of patients and relatives on clinical trials. The project was lead my members of the French ENP.
Greece
• 6th Panhellenic Patients Conference, "Patients in Power", which was held in Athens. Christina Georgiadou and Victoria Fonsou, talked about the EUPATI Academy, the EUPATI Toolbox and the EUPATI Network
Evolution of the ENP Network: Spreading the Word
ENP Webinar
Building relationships with
Stakeholders at the local level
79 participants from all over
Europe.
The webinar focused on four key
challenges facing ENPs today
German ENP Webinar
Developing their own webinar
series.
Also joining forces with the Austrian
and Swiss ENPs to develop a
second webinar but also to look
into the possibility of joint courses
for German speaking territories.
Newsletters
7 ENP Newsletters issued with an
average open rate of 40% ENPs such as Italy and Switzerland
issuing newsletters to keep their
members engaged.
Evolution of the ENP Network: Staying front of mind
■ ENP’s continue to maintain visibility in the traditional and social media
through published articles, radio shows, video and social media sharing.
■ Also ENPs and Fellows continue to take part in conferences. EUPATI had a
major presence at this year’s ISPOR congress in Glasgow, Scotland. This
year there were over 30 sessions that had patients on stage talking about
what matters to them.
Evolution of the ENP Network: Toolbox translations
EUPATI Toolbox Translations
• New toolbox translations continue to be added to the website
• Before Christmas 1,066,01 words were translated to
complete outstanding translations
• **New** Toolbox Translation Guide for ENPs
"I would like to say a huge THANK
YOU to all who participated on the
reviews. I appreciate that so many
people worked together on this in
such a short time. I feel very grateful
for all people who offered their help -
Zuzana, Lionbridge Technologies,
ENP achievements – Fellows, your greatest asset!
■ Working with EUPATI Fellows & Trainees: encourage trainees to share their knowledge with others and to put their training into practice!
■ EUPATI fellow Carole Hagan and GSK ENP member Kay Warner, led EUPATI UK’s three toolbox workshops during October and November. Designed to give a basic introduction to the EUPATI toolbox
PwC
◼ New countries continue to join the Network and ENPs continue to expand
◼ Starter Kit Survey:
• 18% surveyed have used a starter kit
to run a training
• 35% have used the toolbox to run a
training
• 71% surveyed intend to run a National Patient Education Training Programme
• with 41% hoping to do so in the next 6 months.
ENP Network: Looking to the future
x
There will always be challenges…
Engaging Partners
Maintaining Momentum
Sustaining ENP
Activities
In Summary…
1. Have a plan
2. Remember your fellows, they are a valuable resource
3. Stay connected
4. Build synergies with your fellow ENP’s
5. Keep spreading the word
Ireland Case Study:Developing and Implementing a
National Patient Education Programme
Derick Mitchell
CEO IPPOSI, Ireland
National Platform Executive Committee &
Steering Group Elections
Derick Mitchell and Beatriz Silva-Lima
Co-Chairs ENP Network
ENP Executive Committee Nominations and Retiring Members
Retiring Executive Committee Members
Sue Pavitt - UK Rozalina Lapadatu - Romania
New Members for Nomination
Merete Schmiegelow
Denmark
Sandrine Lavelle
Luxembourg
Second Term Nominees
Derick Mitchell
Ireland (Co-Chair)
Beatriz Silva-Lima
Portugal (Co-Chair)
Thierry Escudier
France
Roald Nystad
Norway
Proposed 2018 ENP Executive Committee
Derick Mitchell
Roald Nystad Merete
SchmiegelowBeatriz Silva-
LimaSandrine Lavalle
Thierry Escudier
Gemma Killeen
Patient Academic IndustryENP
Co-ordinator
Results of the Steering Group Elections
◼
Extract from the EUPATI 2017 Programme: Work plan & Governance
National Platforms Network
◼ The National Platforms Network consists of an agreed number of representatives of each of the EUPATI National Platforms that have been established. The National Platforms elect 2 co-chairs, which will represent the National Platforms Network in the Sustaining Partners Assembly and the Steering Group. In these committees, the chairs represent all ENPs as a whole, not only their country.
◼ Governance models of the National Platforms Network, the procedures 2 elect its co-chairs, as well as the rotation model for the co-chairs need to be discussed + agreed amongst the National Platforms.
◼ Coordination of the National Platform Network and the wider EUPATI National Platform membership is provided by the National Platforms Coordinator in a paid capacity. The Coordinator will ensure that existing EUPATI National Platforms continue to disseminate EUPATI resources to patient communities, and he/she will support National Platforms to identify new education and training opportunities using these resources. The Coordinator will also endeavour to increase the number of EUPATI National Platforms across Europe, as well as foster the communication between EUPATI National Platforms in different countries.
◼ The National Platform Coordinator may be supervised by one of the Sustaining Partners as an in-kind contribution to the project. The relationship between the Coordinator and e.g. IPPOSI dates from 2014 and is now well-established and effective.
◼ No budget is currently available to support the National Platforms, over and above one annual ENP meeting and staff and travel costs of the National Platform Coordinator. The National Platforms themselves need to be self-sustained activities, collecting their own funding on the national level.
ENP Network Standing Orders
Question: Do we need to revise any portion of our ENP Standing Orders this year?
◼ Standing orders should be reviewed [and if necessary, revised] by the National Platform Network at each Annual General Meeting.
◼ In exceptional circumstances, three or more countries can table a proposed amendment to the Executive Committee.
Break
15 Minutes
The Future of ENPs and the ENP Network
Session 2
The Future of the ENP Network
Beatriz Silva-Lima & Derick Mitchell
Co-Chairs of the ENP Network
ENP Common Goals
According to the EUPATI-IMI terms of reference, ENPs have thefollowing tasks: (version May 2016)
• To make sure EUPATI understands the educational needs ofpatients and the lay public on medicines R&D at a national level,and feed this into EUPATI's development work.
• To disseminate EUPATI training and education material (andinformation like newsletters, potentially translated into the locallanguage) into the community in the 12 countries.
• To raise public interest in EUPATI in the 12 countries.
• To identify training and education faculty, logistics and financialsupport for national training and education opportunities.
Question: Are these ENP goals out of date?
Issues to consider…
1. What are the common goals for the ENP Network moving forward?
• E.g. Common workplans? Working in regional groups? Certain number of training programmes run? Specific national communication plans?
2. How can ENPs contribute to the future sustainability of EUPATI?
Lunch
60 Minutes
How Can We Learn From Each Other?
Session 3
Workshop Session
Regional Groups
60 Minutes
Workshop Table Groups
Group 1
1 France
2 Italy
3 Malta
4 Portugal
5 Spain
6 Turkey
Group 2
1 Austria
2 Germany
3 Poland
4 Romania
5 Slovakia
6 Switzerland
Group 3
1 Belgium
2 Denmark
3 Finland
4 Ireland
5 Luxembourg
6 Netherlands
7 Norway
8 UK
Questions to consider…
1. How will you implement the ENP Network goals discussed in session 2 in your region?
2. What is your regional workplan for the next two years under EFO-EUPATI?
3. How will this regional workplan be implemented?
Group Feedback & Plenary Discussion
Key Takeaways…
1. We have made valuable connections here today remember to stay connected.
2. Remember your EUPATI fellows and alumni – they are a vital resource.
3. Keep building your ENP network, both within your national ENP and within your regional network. Your network is your most valuable asset.
4. Create synergies and alliances with your fellow ENPs - together you can overcome common challenges.
5. Keep spreading the word. We will always need more educated patients!