EUPATI, European Patients’ Academy, launched in February 2012 as a patient-led Innovative Medicines Initiative (IMI) project, teaches patients to become patient experts to be able to include their first-hand experiences and insights in drug development process.
Availability of education and training materials will permit capacity building of patients and their representatives to make a positive contribution to the medicines research and development (R&D) process, in collaboration with industry and academia. At present, more than 75% of Europeans surveyed have little or no knowledge of medicines research and development and the same survey showed the need to specifically target sub-groups by sex, age, etc and adapt information linguistically.
Despite a general lack of collaboration with patients in medicines R&D, the importance of patients’ involvement in the process is now being recognised as essential to the development of better medicines. The role of EUPATI is to encourage collaboration with patients by providing the necessary information and training.
To encourage involvement by patients in the medicines research and development process, EUPATI offers a Expert Training Course. The first course started in October 2014 and gathered approximately fifty students from twenty-one countries. The second group of 50 will start their 13-month course in October 2015. EUPATI will also launch a toolbox, offering up-to-date educational materials, webinars and videos in seven languages to 12,000 patient advocates in January 2016.
The strength of EUPATI is the setting up of national platforms who may adapt the material to local needs in 12 countries to target thousands of people on a local level. These national platforms have a host of possibilities in the future: to offer local trainings, to collaborate with researchers and clinical trials groups, and are already working in six countries (France, Ireland, Italy, Luxembourg, Spain, UK)
As a public-private partnership, EUPATI is in a unique position to get patients more involved and knowledgeable about medicines R&D. Working in parallel with other patient associations, it seeks to offer credible, alternative resources for patient advocates. Ultimately, increased patient involvement in the medicines R&D process will be mutually beneficial for all stakeholders (patients, sponsors, the pharmaceutical industry, academics, universities and other non-governmental organisations and professional societies) and create better therapies