How EUPATI is helping patients understand their medicines

30 European organizations are collaborating to empower patients and inform the public in all aspects of medicine research and development – including drug discovery, the safety of medicines and access to treatments. By providing comprehensive information to develop patient know-how, they hope to increase patient participation in R&D processes, for example as advocates and advisors, in clinical trials, with regulatory authorities and on ethics committees.

The European Patients’ Academy on Therapeutic Innovation, EUPATI, is led by the European Patients’ Forum, an umbrella organization that works across Europe with patient organizations in public health and health advocacy, as well as universities, research organizations, public bodies, non-profit groups and European pharmaceutical companies. It is a project under the Innovative Medicines Initiative (IMI), a public-private initiative that aims to speed up the development of better and safer medicines for the public.

We spoke to Jan Geissler, director of the European Patients’ Academy. “We are half way through the 5-year project that started in February 2012,” he stated. “It involves four patients organizations, a number of academic institutes, and a number of pharma companies and NGOs – a total of 30 organizations spread over 14 countries.”

Central to the Patients’ Academy’s strategy to reach at least 100,000 European citizens is a new Internet Library due to come online in 2015. The 12-country, seven-language (English, French, Spanish, Italian, German, Polish and Russian) project aims to boost health literacy and provide information on side effects and specific aspects of the medicine development process.

“The EUPATI Internet Library will be like a Wikipedia,” Geissler explains. “It will be for the public as well as patients and patient advocates, and published in seven languages because quite often information is only available in English. We are going to launch it in English by the end of next year and then in the other languages the year after.”

At a recent conference in Warsaw, the team explored how best to represent relatively complex medical R&D topics in a way that is meaningful to the general public. They also discussed the growing importance of social media. Highlighting its value, participants and remote followers sent more than 800 tweets, which were displayed live during the event.

With patients increasingly searching out information about the medicines they take and how they are being developed, there is a clear need for raising awareness and understanding of medicine research and development. People value transparency and hearing facts direct from the source and from those that do research – rather than relying on second-hand information. Projects such as this will build the basis of collaboration between the public, academic researchers, authorities, and the pharmaceutical companies whose innovation processes, up until now, have remained a mystery to many.

Would you welcome being more aware of what is going on behind the scenes in medicine? Or how about in other areas of your life?

In our future blog post, we will be discussing how patients, academic researchers, and drug companies alike can develop better medicines based on the knowledge shared on the EUPATI Patient Expert Training Course.