Welcome Marco Greco from EPF (European Paitents’ Forum), Pierre Meulien from IMI (Innovative Medicines Initiative) and Roald Nystad (EUPATI Fellow) explain why patient engagement, starting with patient education, is basic, and needs to be instituted throughout the medicines research and development process. Speakers: Marco Greco (EPF), Pierre Meulien (IMI) & Roald Nystad (EUPATI Fellow) Session 1…Read more
With its kick-off event on 5th of September 2012, the European Patients’ Academy on Therapeutic Innovation (EUPATI) provided an open forum for stakeholders from all over Europe. More than 100 registered participants from 24 countries attended the first public workshop of EUPATI in Frankfurt, demonstrating the broad interest and real need for more patient involvement…Read more
The European Patients’ Academy for Therapeutic Innovation (EUPATI) took its first steps towards the development of pan-European and national infrastructures with its inaugural regional workshop, held in Frankfurt, Germany, on 5 September 2012. The project, funded by the European Union’s and EFPIA’s Innovative Medicines Initiative and led by patients, was launched in Copenhagen in March…Read more
Almost 50 participants from regulatory authorities, patient organisations, academia, non-profit organisations and industry gathered for a EUPATI Workshop on July 20, 2016 in Berlin to advance and foster the interaction of all stakeholders on patient involvement and engagement in medicines R&D.
Workshop Presentations Download Download Download Introduction to the breakout sessions & case studies presentations Download Download Download Break-out group Presentations Download Download Download Download Video of Speakers Virtual SnapShots Photos Pre-workshop Evening Conference Social Workshop Review Articles Workshop Final Report
Rob Camp kicked off this plenary session by declaring that he had been sending out tweets for the past couple of days, looking for answers about two questions: What do patients need to communicate? And how do patients need to communicate? He read out a selection of words from the responses as something to think about when considering “messaging to the outside world”:
Why does EUPATI matter? The panel was formed by Róisín Adams from Ireland’s National Centre for Pharmacoeconomics, Simon Denegri, chair of the United Kingdom’s INVOLVE project, Cordula Landgraf from Swissmedic, and Birka Lehmann from BfArM, Germany’s Medicines Agency.
It was left to Nicola Bedlington from the European Patients’ Forum, Belgium, to reflect on the day’s discussion. Graham Love had talked about moving to a more systematic approach, with patient involvement becoming mandatory. “What I really liked about his presentation was the honesty. They’re not there yet but they are on a journey.”
For most of the year, our EUPATI National Teams and Platforms (Networks) work tirelessly on patient involvement issues in their respective countries. Interaction between Networks in different countries is thanks in part to early morning teleconferences, Facebook article sharing, and 140 character tweets to support each others events. But for one day each year, EUPATI organises for the hard-working Network members to come together in person to share their experiences of driving patient involvement nationally and to identify best practice in tackling the challenges and the opportunities for patient advocates in their countries.
EUPATI has already established itself as a key player in the involvement of patients in medicines development in Europe. But Europe is a large continent full of variety, and no two countries have identical approaches to involving patients in this process. The European Patients’ Academy has set itself the goal of developing a country-specific approach, with an initial target of setting up National networks in 12 countries. On 22 April more than 180 people came to Dublin to share experiences and develop new thinking about how to spur progress at the national level – 102 of them from patient organisations.