European Patients’ Academy
The European Patients’ Academy on Therapeutic Innovation (EUPATI) provides open-source education on medicines development and the role of patient engagement in the process. EUPATI has mirrored its Public-Private Partnership of diverse stakeholders to create networked clusters of collaboration throughout Europe.
EUPATI focuses on education and training to increase the capacity and capability of patients to understand and contribute to medicines research and development and also improve the availability of objective, reliable, patient-friendly information for the public. EUPATI hosts all their content on EUPATI.eu in English, French, German, Italian, Spanish, Polish, and Russian for anyone to use.
EUPATI launched at the DIA EuroMeeting 2012 in Copenhagen as a pan-European project under the Innovative Medicines Initiative (IMI). The project consortium, led by the European Patients Forum (EPF), with DIA leading education and content development, included: European AIDS Treatment Group, European Genetic Alliance Network, EPF, European Organization for Rare Diseases, DIA, The European Organization for Research and Treatment of Cancer, The Irish Platform for Patient Organizations, Science and Industry, International Society For Pharmacoeconomics and Outcomes Research, Biopeople (University of Copenhagen), Hibernia College, The University of Manchester (Nowgen), Amgen, AstraZeneca, Bayer, Boehringer Ingelheim, Bristol-Myers Squibb, Chiesi, Esteve, Farmaindustria, Genzyme, GlaxoSmithKline, Janssen, Lilly, Merck, MSD, Novartis, Novo Nordisk, Pfizer, Sanofi, UCB, and Verband Forschender Arzneimittelhersteller.
DIA lead the development of the EUPATI Expert Training Course, which launched in 2014, providing a unique opportunity for patients and patient advocates to gain expert-level training in medicines research and development. The course is a mixture of independent eLearning coursework and face-to-face training events over 14 months. The course has been released under a Creative Commons license and can be downloaded for free here.
EUPATI has leveraged the networks to create public-private partnership clusters in Austria, Denmark, France, Germany, Greece, Ireland, Italy, Luxembourg, Malta, Norway, Poland, Portugal, Russia, Serbia, Spain, Sweden, Switzerland, and the United Kingdom. It is with the support of the project and these networks that EUPATI has developed guidance frameworks for patients’ involvement in:
- Industry-led R&D
- Health technology assessment (HTA) bodies
- Regulatory processes
- Ethics committees
The guidance framework are publically available from on the EUPATI website: https://www.eupati.eu/advocacy/consultation/
DIA continues to be a partner in the EUPATI program that is run by EPF from February 2017.-
DIA-CTTI
DIA and the Clinical Trials Transformation Initiative (CTTI) conducted a joint survey in 2014 with multiple stakeholders.
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DIA-PCORI
DIA and the Patient-Centered Outcomes Research Institute (PCORI) collaborated in 2015 to develop a visual model of Patient Engagement in Benefit-Risk Assessment through the Medical Product Life Cycle.
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