IMI patient education project EUPATI has set up an independent, non-profit foundation to build on the project’s work. The creation of the EUPATI Foundation secures the project’s legacy and paves the way for the further development of patient education resources in Europe and beyond.
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Recent years have seen a growing recognition that patients can and should be involved in all aspects of medical research and development (R&D). However, for this to be meaningful patients need to understand how this process works from A to Z, including the different steps, the jargon, and the roles of various stakeholders and committees.
The EUPATI project was launched in 2012 with the goal of delivering well structured, scientifically reliable educational resources on medical research and development designed specifically for patients. Ultimately, the hope was that this would help patients to play a more active role in research and provide patients’ advice and insights to other groups involved in medicines R&D.
The project more than achieved its goals and in 2018, a new IMI-funded project, EFOEUPATI, was launched to build on EUPATI’s results and ensure their long-term sustainability. EUPATI has also received support from the European Institute of Innovation and Technology (EIT Health).
Now, as EUPATI moves on to its next phase as a non-profit foundation in the Netherlands, it is timely to look back on just how much the project has achieved, and what it plans to do next.
For the most active patient representatives, EUPATI has set up and ran a 14-month patient expert training course that equipped students with advanced knowledge and skills to engage in medical research and development. To date, close on 160 patient experts have completed the course and 50 more are in training. Many course participants are actively applying their knowledge and skills in a wide array of organisations, projects and committees.
Looking to the future, EUPATI is revamping the course as an online, on-demand, modular course that will allow students to work at their own pace and select modules that meet their individual needs. Very soon the EUPATI Open Classroom will be made available to ensure that more patients, patient representatives and other stakeholders are trained in medicines R&D. Meanwhile a ‘matchmaking’ service will help bring together research and development projects with trained patient experts.
The multilingual online toolbox is already packed with educational information and resources for patients and has attracted over 4 million individual users since its launch in 2016. EUPATI plans to add new languages as well as new content on medical devices, digital health and other emerging topics.
There are already over 20 EUPATI National Platforms (ENP) bringing together patient, academic and industry partners as well as other stakeholders provide a forum for more local activities designed to raise awareness about the role of patients in research. These will be redeveloped and enlarged in the coming years.
Also in the pipeline are further training events for people from academia or industry who want to learn about how best to involve patients in their research.
EUPATI has also revised its governance structures, to ensure the public-private nature of the initiative remains intact and to guarantee the accuracy and accessibility of the content of the materials produced for the online toolbox and patient expert course.
‘EUPATI is one of the pinnacles of the patient advocacy movement that we started at EPF [the European Patients’ Forum] and other local and European organisations many years ago,’ said Anders Olauson, chair of the EUPATI board and honorary president of the EPF. ‘The establishment of the EUPATI Foundation will secure flexibility and the proper structure to grow and flourish.’
‘The EUPATI team should be incredibly proud of themselves for achieving their goal of launching an independent foundation that will carry on the work begun under the IMI projects EUPATI and EFOEUPATI,’ said IMI Executive Director Pierre Meulien. ‘I am convinced that thanks to EUPATI, more patients will be able to play an even greater role in medical research and drug development, long into the future.’