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
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.
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.