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EUPATI National Platform Network AGM 2018 Berlin, 9 May, 9am - 4pm

EUPATI National Platform Network AGM 2018de.eupati.eu/wp-content/uploads/sites/4/2018/05/Slide...2018/05/09  · EUPATI sustainability –the story so far Core mandate of the futures

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Page 1: EUPATI National Platform Network AGM 2018de.eupati.eu/wp-content/uploads/sites/4/2018/05/Slide...2018/05/09  · EUPATI sustainability –the story so far Core mandate of the futures

EUPATI National Platform Network AGM 2018

Berlin, 9 May, 9am - 4pm

Page 2: EUPATI National Platform Network AGM 2018de.eupati.eu/wp-content/uploads/sites/4/2018/05/Slide...2018/05/09  · EUPATI sustainability –the story so far Core mandate of the futures

Welcome

Beatriz Silva-Lima & Derick Mitchell

ENP Network Co-Chairs

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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

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EUPATI Central Update

Session 1

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EPF-EUPATI 2018 and Beyond

Radu Costin Ganescu

EPF Board

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Matthew May

EUPATI Programme Coordinator

The European Patients’ Academy

(EUPATI)

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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

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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)

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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)

Page 10: EUPATI National Platform Network AGM 2018de.eupati.eu/wp-content/uploads/sites/4/2018/05/Slide...2018/05/09  · EUPATI sustainability –the story so far Core mandate of the futures

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

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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

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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

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Thank you for making EUPATI the success it is today

25,152Number of users we exceeded

our hosting plan by last month

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National Platform Coordination Update

Gemma Killeen

EUPATI National Coordinator

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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

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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

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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

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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

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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.

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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

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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.

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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.

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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,

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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

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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

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There will always be challenges…

Engaging Partners

Maintaining Momentum

Sustaining ENP

Activities

Page 27: EUPATI National Platform Network AGM 2018de.eupati.eu/wp-content/uploads/sites/4/2018/05/Slide...2018/05/09  · EUPATI sustainability –the story so far Core mandate of the futures

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

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Ireland Case Study:Developing and Implementing a

National Patient Education Programme

Derick Mitchell

CEO IPPOSI, Ireland

Page 29: EUPATI National Platform Network AGM 2018de.eupati.eu/wp-content/uploads/sites/4/2018/05/Slide...2018/05/09  · EUPATI sustainability –the story so far Core mandate of the futures

National Platform Executive Committee &

Steering Group Elections

Derick Mitchell and Beatriz Silva-Lima

Co-Chairs ENP Network

Page 30: EUPATI National Platform Network AGM 2018de.eupati.eu/wp-content/uploads/sites/4/2018/05/Slide...2018/05/09  · EUPATI sustainability –the story so far Core mandate of the futures

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

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Proposed 2018 ENP Executive Committee

Derick Mitchell

Roald Nystad Merete

SchmiegelowBeatriz Silva-

LimaSandrine Lavalle

Thierry Escudier

Gemma Killeen

Patient Academic IndustryENP

Co-ordinator

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Results of the Steering Group Elections

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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.

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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.

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Break

15 Minutes

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The Future of ENPs and the ENP Network

Session 2

Page 37: EUPATI National Platform Network AGM 2018de.eupati.eu/wp-content/uploads/sites/4/2018/05/Slide...2018/05/09  · EUPATI sustainability –the story so far Core mandate of the futures

The Future of the ENP Network

Beatriz Silva-Lima & Derick Mitchell

Co-Chairs of the ENP Network

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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?

Page 39: EUPATI National Platform Network AGM 2018de.eupati.eu/wp-content/uploads/sites/4/2018/05/Slide...2018/05/09  · EUPATI sustainability –the story so far Core mandate of the futures

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?

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Lunch

60 Minutes

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How Can We Learn From Each Other?

Session 3

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Workshop Session

Regional Groups

60 Minutes

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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

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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?

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Group Feedback & Plenary Discussion

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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!

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