Press Release / Announcement
Contact: Tamás Bereczky: firstname.lastname@example.org
EUPATI continues into a second phase after demonstrating the importance of patient education, empowerment and engagement
31 Jan 2017 – Brussels – EUPATI, the European Patients’ Academy, closes its first phase as a project of IMI to now become a programme under the aegis of EPF. The European Patients’ Academy provides scientifically reliable, objective, comprehensive information to patients and the general public on the research and development process of medicines. Just 5 years ago, EUPATI set out to educate patients in seven languages (English, French, German, Italian, Polish, Russian and Spanish) via various platforms, principally via its website.
At our most recent conference in Brussels on 14 December, it was concluded that we had reached more than 80,000 individual users of the website. In mid-January 2017 the number of individual users of the EUPATI website surpassed the 100,000 mark. Based on this success, Nicola Bedlington, General Secretary of EPF, has confirmed that although EUPATI had reached its conclusion as an IMI project, it would carry on as a programme under the auspices of the EPF, keeping the public-private partnership spirit.
Celebrated during the conference in December EUPATI has graduated 97 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 in all stages of medicines development has increased with the pharmaceutical industry, regulatory authorities, universities and HTA bodies. This ranges from advising researchers when starting new programs in areas of unmet-medical need through to helping with clinical trial design up to participation in the safety assessment of (new) medicines.
The key assets of EUPATI, the website, the Toolbox, and the Expert Training Course, will be maintained and developed, continuing to 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 started to take up its work. This will include a good collaboration with the EUPATI National Platforms but also other initiatives in the field of patient engagement and will develop a strategy for long-term sustainability.
The website offers more than 200 articles (in 12 categories), 400 glossary terms, almost 250 acronyms, 55 infographics, 40 presentations, all in at least seven languages as stipulated by EUPATI’s vision. Also, as part of the terms of the work, all material is offered under Creative Commons, meaning anyone can use, reuse, adapt the material as long as they do not sell it, just by crediting EUAPTI and the Creative Commons terms.
There are now also 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 start to appear in 2017, including Dutch, Danish, Romanian and Portuguese. The webpage itself is getting a new design, to facilitate easier access to what you need when searching for information at www.eupati.eu, making navigation, downloads, entry points and access easier.
EUPATI is now reaching international audiences. EUPATI has about4000 Twitter followers and on Facebook we have reached in the past month almost 20,000 people.
EUPATI has established a network of EUPATI National Platforms (ENPs) to help people on a national level get more involved. There are currently 18 National Teams set up, in varying phases of evolution. Please find your National Team to hook up with at https://www.eupati.eu/eupati-network/ and learn more about what these teams do and how you can connect with them!
EUPATI has also, jointly with the respective stakeholders, produced Guidance Documents to help in engagement practices of patients in medicines research and development, ranging from the pharmaceutical industry through ethical and regulatory processes to HTA bodies. These practical tools can be found at https://www.eupati.eu/guidance-patient-involvement/
EUPATI has become a strong partnership network in Europe over the last five years and we invite every interested party to join us on our way forward.
*To accompany this article, photos are available at http://www.facebook.com/eupati.eu
About EUPATI - The European Patients' Academy provides scientifically reliable, objective, comprehensive information to patients and the general public on the research and development process of medicines. We increase the capacity of patients and the lay public to be effective advocates and advisors, e.g., in clinical trials, with regulatory authorities and in ethics committees. EUPATI is a team of 33 organisations, led by the European Patients' Forum, made up of a unique combination of patient organisations, university and not-for-profit organisations expert in patient and public engagement, along with European pharmaceutical companies working in research. EUPATI wants to offer information and education to help involve patients and patient advocates throughout the medicines research and development process.
EUPATI aims to make a visible difference to all stakeholders involved in medicines research and development, pushing for a more meaningful involvement of patients in areas like drug discovery, clinical trials planning and conduct, the assessment of safety of medicines, the balance of benefit and risk and health economics.
Find out more about the European Patients' Academy, including our ethics and transparency policies, in seven languages, at: https://www.eupati.eu/eupati-ethical-framework/
The "European Patients' Academy on Therapeutic Innovation" project received support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed of financial contribution from the European Union‘s Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.