EUPATI Dublin 2015

1. EUPATI 2015 Workshop, 22 April 2015, Dublin
EUPATI TAKING OFF IN YOUR COUNTRY – An Interactive Workshop on
Implementing EUPATI in Your Country
Report from Break-Out Group 4 (11:00-12:00 / 13:00)
Keeping it going over the longer term / How to make EUPATI a long lasting
success
The 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.

2. Shared best practise and considerations for the
future steps of national implementation
 Time Now is ready to share national experience
and share best practise
 Next future with EUPATI training material, tool
box and train-the-trainer opportunities

3.  Shared best practise and considerations for
the future steps of national implementation
 “Micro” level
• Engagement of local stakeholders – formalization of
structure recommended
• “Concept paper” used for promotion and funding*
• Transparency
• Activities – events*
• Communication – various options incl. young people.
Option to use participating organizations in
communication, social media
• Challenges: local politics and opinions, language

4. Shared best practise and considerations for the
future steps of national implementation
 “Macro” level
• Access to information, tools
• Credibility of EUPATI, its training and its training
material
• Impacting - link EUPATI into European decision making
(e.g. Commission, European Medicines Agency)
• Collaboration between stakeholders to be expanded
• Challenges...
• Patient leadership as legitimate voice in decision-
making is an important part of the future system
(European leadership model with EUPATI to be further
developed – network of platforms etc.)

5. BACK UP SLIDES

6. 4 ENP sustainability
Chair: Matthias
Gottwald
Rapp: Per Spindler
There is an ENP
established, there is
governance model
in place, there is a
strategic plan to
follow, and national
interest in EUPATI is
gathering pace.
To identify what
steps ENPs need to
take to ensure
EUPATI is
established in their
country in the
long-term i.e post-
2017
To identify what
support might be
provided from
EUPATI centrally to
ENPs nationally to
support
sustainability
efforts?
1. How can National Platforms future-proof
themselves? Have some countries already
started thinking about this? Have the wheels
been put in motion to ensure sustainability?
2. How should an National Platform work to
position themselves as the ‘go-to’ body for
health policy and decision-makers? What are
some of the unique strengths of the National
Platform?
3. What are some of the interventions we hope
National Platforms will have made in five
years? In ten years?
4. Are there strategic alliances the National
Platforms should seek to make? How should
they engage with the media?

7.  Introductions 10:30-11:00 – EUPATI in countries
• Silvano Berioli, EFGCP/Italy
– diversity incl. “prima donnas”, resources/financials, internal politics,
industry collaboration model, media/PR
– initial “nucleus” with mentors, adjustment, local stakeholder support
(e.g. AIFA (MoU), ISPOR), methodology of collaboration
– inclusive and expanding organisation (non-profit establishment),
activities e.g. workshops
• Daniel Gil, Farmaindustria/Spain
– PO+universities+Farmaindustria
– Coordinator (Laura Kavanagh), event(s), government dialogue (health
ministry) – “readiness” is lacking behind
– Executive Board (multiple stakeholder group) established to manage
ENP
– Activities – spreading the news of EUPATI in relevant fora
– Action Plan: content, activities, communication, stakeholders
– EUPATI training course students involved, EUPATI course material
(translation needed) and tool box
– Coordination of patient engagement/involvement nationally (national
regulation)

8.  Introductions 10:30-11:00
• Rozalina Lapadatu / APAA/Romania
“Knowledge is power.”
– Patient involvement in national bodies, law debates, hospitals ethics
committees (not in medicines agency ethical committees, HTA
meetings)
– EUPATI trainees, media, academia, industry, health care
professionals (in progress)
– media articles, presentations at conferences
– Focus on project benefits for patients, patient advocates and partners
– Call for EUPATI Tool Kit

9.  First round de table
• Challenges with collaborating with other organizations
(they were already in the field) – need to convince and
involve
• European added value demonstrated to outside
stakeholders – alignment of platforms
 Switzerland
• National Liaison Team (not yet a platform), language
division, concept paper (vision, strategic intentions,
fundraising), then promotion of national platform, event
in autumn 2015

10.  First round de table
 UK
• Successful NLT
• Very active in network, major event, running start – next
step to be considered (e.g. geography), sharing best
practise with e.g. Italy, certification to accreditation
suggested, tool kit will be useful for national training
sessions

11.  Who are the important national
partners/stakeholders to make NLTs
sustainable?
 (UK)
• Academia-industry-patients links established
• Suggested next step: European Commission,
Parliament, may influence the agenda in establishing
the national platforms

12.  Who are the important national
partners/stakeholders to make NLTs
sustainable?
 (IT)
• Director of AIFA important in support
• Networks established during EUPATI period will sustain
after the project stops in Feb 2017 – may be part of
strategy (important players to involve in the continuum)
• Try not to get “enemies”
• Perhaps a “federation” to be supported by institutions
(endorsement) – probability to fail will be less

13.  Who are the important national
partners/stakeholders to make NLTs
sustainable?
 (BfArM, IT)
• Regulatory agencies strive to involve patient in
activities
• Increase transparency to engage stakeholders (not to
create competition)
• Legal entity may be important, institutionalization is
important for credibility and “winning” other local
stakeholders – provide opportunity for stakeholders to
e.g. present ideas and contributions
• Support by EFPIA companies – also internal
discussions re. best practise

14.  Who are the important national
partners/stakeholders to make NLTs
sustainable?
 (EPF)
• Include neutral and important national stakeholders
(e.g. ISPOR in IT)
• Information to national what is going on at the
European scene
• Influence both nationally and European political level
(e.g. the agenda of personalized medicine)
• Finance – divide btw ordinary operations and activities
• (Austria) Starting on NLT – how was communication to
stakeholders after NLT kick-off event?

15. • (Austria) Starting on NLT – how was
communication to stakeholders after NLT kick-off
event?
• How was resources found to continue?
– interested by national organisation (which was
interested)
– personal contributions without payment
– industry money for web, newsletter etc (IT)
– Using existing patient organisation (UK)
– Activity on Twitter, Newsletter

16.  Media involvement
• (IT) Use institutions communication channels and
resources
• Individual volunteer help from press agencies
• Developing “best practices” and share experience now
(good timing at present stage of EUPATI) – engage key
journalists

17.  Hope for interventions - future
• (CH) KPI – for patients involvement (e.g. UK journals
with patients)
• Groups of train-the-trainers with EUPATI Tool Kit
• (MS) Involvement of young people – how?
• (IT) EUPATI set of forever
• Patients paid for panel contributions
• European Medicines Agency as partner going forward
– already involving patients. Good model with
EUORDIS experience

18.  Hope for interventions - future
• Need for patient leadership – legitimate voice in
decision-making – is an important part of the future
system – equal partners – national groups can help this
process
• Micro – individual empowerment
• Macro access to information, tool, influence, link
EUPATI into European decision making (e.g.
Commission, EMA)
• Continued collaboration between stakeholders needed
and to be expanded