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More than 150 representatives from patient organizations, industry, academia and the world of regulation met in Warsaw today to plan the next stage of an ambitious European project aimed at increasing the involvement of patients in the development of new medicines.
At the heart of their discussions was the devising of a strategy to reach at least 100,000 European citizens with an interest in health. The idea is to equip them with information and tools to understand how the development process works – and perhaps motivate them to become more involved in it.
The workshop was held by the European Patients' Academy, known as EUPATI, funded by Innovative Medicines Initiative, a partnership of the European Commission with the European Federation of Pharmaceutical Industries and Associations (EFPIA).
The scene was set by Anna Zawada from Poland's Agency for Health Technology Assessment. Patient involvement is written into the agency's operating principles, she said. But in practice, it can be hard to find patients with sufficient expertise and confidence to fill the roles assigned to them.
Anna Zawada's introduction was followed by the first public presentation of EUPATI-sponsored research into public knowledge of and attitudes to medicines development across Europe.
Bella Starling from the University of Manchester and the UK NHS's Central Manchester University Hospitals revealed – perhaps predictably – low levels of knowledge of medicines development across Europe, including about how patients can contribute to the process. But there is also considerable public interest in the area, though accompanied by a lack of trust in the authorities and the industry in some countries.
The research evidence will underpin EUPATI as it develops its plans to communicate with the health-interested public. Those plans will be supplemented by suggestions made at the workshop – and by some of the more than 700 live Tweets coming in to the workshop at #eupati2014.
Top of the list of suggestions is the growing importance of social media as a way of reaching the public generally, especially the young and people with reduced levels of literacy. "We need to be open to the possibilities of technology, not fearful," said Nicola Bedlington from the European Patients' Forum.
The lynchpin of the plan to engage hundreds of thousands of Europeans will be EUPATI's new Internet Library. Project director Jan Geissler explained that this will come online towards the end of 2015, and will be available in seven European languages – English, French, Spanish, Italian, German, Polish and Russian.