EUPATI, 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.

EUPATI was established in 2012 as a project funded by the Innovative Medicines Initiative and set out to educate patients across Europe via various platforms, principally its website. EUPATI has since become a programme under the aegis of the European Patients’ Forum (EPF), maintaining the public-private partnership spirit.

The key assets of EUPATI – a Website, a Toolbox, and an Expert Training Course are continuing to educate and empower patients for a more active role as partner in all aspects of medicines research and development. The work of EUPATI includes strong collaboration with the (IPPOSI-coordinated) 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 long-term sustainability.

IPPOSI’s role in EUPATI is to establish EUPATI National Platforms in European countries mirroring the IPPOSI partnership between patients, science and industry. To date, platforms have been established in 18 countries.  The EUPATI National Coordinator is based in IPPOSI.

For more on the EUPATI project, visit the EUPATI website: www.eupati.eu

EUPATI tools & resources

The EUPATI Toolbox on Medicines R&D – www.eupati.eu – includes 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. The webpage will soon be redesigned, to incorporate additional languages, facilitate easier access to what you need when searching for information, making navigation, downloads, entry points and access easier.

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 here.

The EUPATI Patient Expert Training Course – offers patients and patient representatives from across Europe the opportunity to participate in a 14 month, blended learning EUPATI Patient Expert Training Course. Trainees engage in over 250 hours of e-learning and two face-to-face training programmes in order to receive a “EUPATI Fellow” certification. Modules covered include the Discovery of Medicines and Planning of Medicines Development; Non-Clinical Testing and Pharmaceutical Development; Exploratory and Confirmatory Clinical Development; Clinical Trials; Regulatory Affairs, Medicinal Product Safety, Pharmacovigilance; and HTA Principles and Practices. Since September 2014, nine Irish IPPOSI members have undertaken to complete the course and they graduated on 13 December 2016 in Brussels together with peers from over 33 countries. EUPATI Fellows provide an important resource for medicines research and development partners, and it is foreseen that these patient experts will actively contribute both at the national and European level.

EUPATI National Platforms

A network of EUPATI National Platforms has been established across Europe 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 here and learn more about what they do and how you can connect with them.

Based on the IPPOSI model, EUPATI National Platforms are national networks of health partners. Comprising initially of patients, academia and industry representatives, membership is open to government health departments, regulatory bodies, policy and decision makers, healthcare professionals (doctors, nurses, pharmacists), as well as medical journalists. Members explore national patient education and involvement challenges, working together to identify training opportunities and to support patients to become actively involved in R&D.

IPPOSI coordinates the network of EUPATI National Platforms in the following countries: Austria, Belgium, Denmark, France, Germany, Greece, Hungary, Ireland, Italy, Norway, Luxembourg, Malta, Poland, Portugal, Romania, Slovakia, Spain, Switzerland and the UK.

In Ireland, the EUPATI National Platform is supported by IPPOSI (i.e. all IPPOSI members are members). The National Platform is led by the IPPOSI CEO and includes the nine Irish EUPATI Fellows and other national patient, academic and industry representatives. Regular meetings explore untapped opportunities for cooperation/dialogue/partnership in medicines R&D in Ireland, and decide on how to use the EUPATI course and EUPATI Toolbox to enhance national patient education. Learn more about the EUPATI National Platform in Ireland here.

Eupati conference 2016

At the most recent EUPATI conference in Brussels on 14 December 2016, 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.

Go here for more about the event, including presentations and pictures.