EUPATI’s vision for 2020 is of a society where patients are active “from A to Z”. The key outcomes will be better health for all, making sure that investment goes “to the right place at the right time”, a true partnership of all stakeholders, and patients “actively and systematically involved” in all stages of medicines research.
Before the workshop split into smaller break-out groups to look at specific aspects of developing the EUPATI presence at the national level, it heard three case studies: from Italy, Spain and Romania. Each dealt with a different kind of experience. Italy and Spain are both core countries of the EUPATI project and both have established National Networks. But although EUPATI has had to limit the scope of its funded operations – the money simply isn’t there for complete European coverage at this stage – this has not stopped other countries from seeking to set up their own Teams and Platforms. Romania is one such country.
“We had a very vibrant discussion,” said rapporteur Karin Holm, Patient Advocate for Cancer Research and Treatment (PARCT), Switzerland. The group looked at some of the benefits of having a National network and found it could be a central point for national policy and regulatory organisations to ask questions. Networks are also a way to bring a diverse group of national partners together, to speak with one voice, to “connect the dots between organisations”. And the existence of a national network itself eases the path to multi-sectorial cooperation between academia, government and pharma. Other benefits include having one group to address key issues across the nation, and getting all the funders around one table.
This meeting was about taking concrete actions that help support patient involvement in research and development (R&D), said Nicola Bedlington, Executive Director, European Patients’ Forum at the opening address of the workshop. Nicola outlined the explicit and implicit objectives of EUPATI as the starting point for our discussions. Through empowering patients to be involved at all stages of R&D and building capacity among the advocate community there is an opportunity to make patient centricity in R&D a reality. View the meeting summary report and the case studies developed.
On 2 April 2014, more than 150 representatives from patient organisations, industry, academia and the world of regulation met in Warsaw, Poland, to lay plans for a key part of the EUPATI project – the European Patients’ Academy for Therapeutic Innovation. In what is probably the first – and certainly the most ambitious – attempt to broaden understanding among tens of thousands of European patients about the medicines development process, delegates spent a day discussing how best to reach this key audience.
EUPATI’s first full conference with a 183 participants, held in Rome on 19 April 2013, was a revelation. View videos and presentations from the event.
The goal of this first EUPATI Workshop on 5 September 2012 was to discuss EUPATI’s strategic approach to patient information and education on the new medicines development process with experienced patient representatives from different European countries and other stakeholders in the information and communication process’s like investigators, members of ethics committees and representatives from competent authorities.