OTHER RARE DISEASE NEWS
EUPATI moves forward! Patient education & empowerment equals better medicines & better health outcomes
EUPATI, the European Patients’ Academy, closes its first phase as a project of IMI to now become a programme under the aegis of the European Patients’ Forum (EPF). The European Patients’ Academy provides scientifically reliable and comprehensive information to patients and the general public on the medicines research and development process to enable their involvement. Just 5 years ago, EUPATI set out to educate patients across Europe in seven languages (English, French, German, Italian, Polish, Russian and Spanish) via various platforms, principally its website.
The key assets of EUPATI - the website, the Toolbox, and the Expert Training Course - will be maintained and developed, continuing to educate and empower patients for a more active role as partner in all aspects of medicines research and development. The funding for the next three years is ensured and the project management has begun its work. This will include strong collaboration with the EUPATI National Platforms (national education/ empowerment teams in 18 countries) as well as other initiatives in the field of patient engagement and will develop a strategy for a long-term sustainability.
At our most recent conference in Brussels on 14 December, our outreach was more than 80,000 individual users of the website. In mid-January 2017 that number surpassed the 100,000 mark. Based on this success, and the clear demand, Nicola Bedlington, Secretary General of EPF, has confirmed that although EUPATI has reached its goals as an IMI project, it will carry on as a programme under the auspices of the EPF, keeping the public-private partnership spirit.
Also during the December conference, EUPATI graduated 96 Expert Patients (now known as EUPATI Fellows) from 31 different countries in 58 disease areas to become future trainers and experts in their patient roles*. A survey among EUPATI Fellows showed that with their new expertise, their engagement as partners in all stages of medicines development has increased significantly - with the pharmaceutical industry, regulatory authorities, universities and HTA bodies. This collaboration ranges from advising researchers when starting new programmes in areas of unmet medical need, input on clinical trial design, and participation in the safety assessment of new medicines. The call for applications for the 2017/2018 EUPATI Expert Patient course has just been released!
The online resources include more than 200 articles (in 12 categories), 400 glossary terms, almost 250 acronyms, 55 infographics, 40 presentations, all in at least seven languages in line with the EUPATI mission. The educational material is offered under Creative Commons, meaning anyone can use, reuse and adapt the material as long as they do not sell it, just by crediting EUPATI and referring to the Creative Commons terms.
At www.eupati.eu, there are now “case reports” and starter kits to help any trainer use the material and make it fit their very specific needs wherever they are. While the focus has been on the original seven languages, new languages will appear in 2017, including Dutch, Danish, Romanian and Portuguese. The webpage will soon be redesigned, to facilitate easier access to what you need when searching for information, making navigation, downloads, entry points and access easier.
EUPATI is now reaching international audiences. As expected, our primary users come from Europe (more than 72,000), but also from the Americas (16,000+). EUPATI users now extend to Asia with more than 10,000 visitors and to Africa more than 2500! 70% of our visitors to date are between the ages of 25 and 44. EUPATI has about 4000 Twitter followers and on Facebook we have reached almost 20,000 people in the past month.
EUPATI has established a network of EUPATI National Platforms to help people on a national level get more involved. There are currently 18 National Platforms set up, in varying phases of evolution. Please find your National group at https://www.eupati.eu/eupati-network/ and learn more about what they do and how you can connect with them!
EUPATI has also produced Guidance Documents to help in engagement practices of patients in medicines research and development, with the pharmaceutical industry, ethical committees, regulatory agencies and HTA bodies. These practical tools can be found at https://www.eupati.eu/guidance-patient-involvement/.
EUPATI has become a strong European partnership in patient education and empowerment in the entire life cycle of medicines and we invite anyone with an interest and commitment in driving this forward to join us.