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

EUPATI in Your Country

Report from Break-Out Group 3

Make it work nationally (for Non EUPATI Countries)

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.

Make it work nationally (for Non EUPATI Countries)

Due to resource constraints EUPATI has no plans to establish more than 12 EUPATI National Platforms. But there are pro-active, enthusiastic and committed supporters interested in driving patient involvement in their country.

It was the objective of this Break-out Group To identify which steps individual supporters of EUPATI

can take in countries where no ENP is foreseen   To clarify for supporters in a country where no ENP is

foreseen which support is available from the EUPATI project

Make it work nationally (for Non EUPATI Countries)

Countries represented in the audience:17

NL, DK, Romania, CZ, Greece, Ireland, Turkey, UK, Germany, Portugal, Cyprus, Hungary, Slovakia, Switzerland, Latvia, Lithuania, US

Make it work nationally (for Non EUPATI Countries)

1. Why do you want to install EUPATI in your country?

What are your drivers, your rationale and your goals? -Patients need to get more and correct information, learn where to find it and how-Patients need to understand their role in research as participant and advisor-Need for a “joint language” between all stakeholder groups, an advantage of the PPP set-up in EUPATI-Improved awareness and understanding of relevance of treatment instructions-Increased respect for patients as partners in the other stakeholder groups

What are your expectations of EUPATI?-Better information makes expectations of stakeholders more realistic-That information provided by EUPATI is and remains absolutely credible

Make it work nationally (for Non EUPATI Countries)

2. What would you need from EUPATI to support your activities?

-Letter of Intent/Introduction to give to Academia-EUPATI Speaker for national events from a needed stakeholder background-Presentations on EUPATI-Support in getting the competent authorities, HTA agencies, MoH, etc. involved-Availability of the toolkit earlier than later-Clarification of the issue of “representativeness”-Clarification of the rules on CoI when representing the IMI project

Make it work nationally (for Non EUPATI Countries)

3. Which hurdles do you foresee in implementing EUPATI on a national level?

-Patients are not very influential yet in my country-Still substantial gaps between patients and industry-Organising the translations-Availability of budget-Need for an organisation who can sign a contract with industry and can open a bank account-A recommendation on how to organise the translation process

How could EUPATI help to overcome these different national obstacles?- Helping to establish more “professional” patient representatives and the understanding of the relevance of a “Patient Key Opinion Leader”

Make it work nationally (for Non EUPATI Countries)

4. How could non-EUPATI countries learn from each other and cooperate effectively?

-How to collaborate with the competent authorities-How to achieve public funding

How could non-EUPATI countries buddy up with EUPATI countries and liaise productively?-Create a twin-partner with a EUPATI country

Make it work nationally (for Non EUPATI Countries)

5. How would you enable sustainability of EUPATI mission/vision beyond 2017 in your country?

We as non-EUPATI countries need to think about sustainability from Day 1 as we have no seed money from EUPATI