Patients’ Academy: many views, varied ideas, one vision

With its first public workshop kick-off event on 5th of September 2012 in Frankfurt, the European Patients' Academy (EUPATI) provided an open forum for stakeholders from all over Europe. More than 120 registered participants from 24 countries attended this event, demonstrating the broad interest and real need for more patient involvement when new treatments are being developed.

“Everybody recognises that there are many unmet needs for most patients with life-threatening diseases,” said Nicola Bedlington, Executive Director of the European Patients’ Forum and project coordinator of EUPATI. “Patients know their needs best but rarely have the broad know-how on how the highly regulated and complex R&D process works. Our Patients’ Academy aims to address this by educating patients about the medicines development processes. We know it can be done.”

In its first 8 months, the Patients’ Academy has not only established the structure and initial processes for this 5 year project, but has also achieved first results in its seven work packages which were presented in Frankfurt. The workshop was designed to open up the discussion on these first results, providing a space for gathering, discussing, exchanging and developing ideas and plans. Covering a huge range of perspectives, participants included patient advocates as well as representatives from academic institutions, not-for profit organisations and industry from all over Europe.

“We need to talk to each other to achieve the best outcome”, added Frank Wells, National Research Ethics Advisor, “communication is the name of the game.”

These are early days for the European Patients’ Academy. Yet the workshop has demonstrated that solid foundation work has been done, and much more will follow through meetings like this one.

Click on the right-hand column to read the press release about the workshop.

A more detailed workshop report will be available soon on www.patientsacademy.eu – please register for the EUPATI Newsletter to hear as soon as it is available.