G4 report from breakout group 4

EUPATI 2015 Workshop, 22 April 2015, DublinEUPATI TAKING OFF IN YOUR COUNTRY – An Interactive Workshop on

Implementing EUPATI in Your CountryReport 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.

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

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

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.)

BACK UP SLIDES

4 ENP sustainability Chair: Matthias GottwaldRapp: 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?

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)

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

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

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

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

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

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

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?

• (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

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

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

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