IMI’s EUPATI project delivered a wealth of resources to support and educate patients who wish to become more involved in medical research and drug development. These include the patient expert training course, the online multilingual toolbox, and the network of national platforms. The goal of EFOEUPATI is to develop a viable business model to ensure the viability of these resources in the medium to long term. Among other things, the project will create a patient education and engagement portal that will host relevant information and resources for patients and other stakeholders. This will ultimately replace the current EUPATI website. EFOEUPATI will also strengthen the coordination and impact of the existing EUPATI national platform network by promoting collaboration and knowledge exchange.
FACTS & FIGURES
IMI2 - Call 11
|Grant agreement number||
Type of Action:
|EFPIA in kind||
Achievements & News
Patient education project goes global with Japan national platform
Former IMI patient education project EUPATI is going global with the launch of a national platform in Japan, and the translation into Japanese of its toolbox. The move highlights EUPATI’s role as a global pioneer of patient education.###
EUPATI has already established national platforms in over 20 European countries. Now, the creation of the ‘Patient and Public Involvement Consortium in Japan’ (PPI Japan) marks the first EUPATI national platform outside Europe. The PPI Japan story began in 2016, when Satoshi Miki, Vice-President of UCB Japan, learnt about EUPATI.
‘I was astonished and stunned with its objective and the system that had been already well advanced and up & running in Europe,’ said Mr Miki, who is now a board member of PPI Japan. ‘I felt strongly that patient involvement should be made available in Japan.’
Simply copying and pasting EUPATI was not an option. ‘The background and relationship of patients and medicine as well as cultural aspects in Japan are so different from those in Europe,’ explained Mr Miki. One of PPI Japan’s first tasks was to translate the EUPATI toolbox into Japanese – this went live at the beginning of the autumn. Most of the content of the toolbox is relevant to patients anywhere in the world. However, the PPI Japan team is creating new texts on regulatory systems, pharmacovigilance and health technology assessment (HTA) to reflect how these things work in Japan.
Looking to the future, PPI Japan’s priorities are to continue its collaboration with EUPATI, introduce the EUPATI tools in Japan, and support the involvement of patients and the public in medicines development.
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EUPATI project embarks on a new chapter
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. ###
EUPATI has pioneered patient education in medicines research and development. Close on 160 patient experts have completed the intensive, 14-month EUPATI course, and many graduates are actively applying their knowledge and skills in a wide array of organisations, projects and committees. The project’s 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. And there are already over 20 EUPATI National Platforms (ENP) bringing together patient, academic and industry partners as well as other stakeholders and providing a forum for more local activities designed to raise awareness about the role of patients in research. Looking to the future, the new EUPATI Foundation plans build on these achievements.
‘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.’
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A school for patients? Yes, you can be an expert in that
If patients are to be involved in medicine R&D, it’s to everyone’s benefit that they understand how the process works. Tamás Bereczky is a course coordinator for the IMI-funded EUPATI, an ‘academy’ that helps turn patients into patient experts, so that they can contribute as equals to the drug development process. ###He is also a vocal campaigner for the rights of people living with HIV/AIDS and has a PhD in the social psychology of patient advocacy.
‘The tradition of patient involvement in science and research and development originates to a large extent from the HIV tradition and to some extent, breast cancer,’ explains Tamás in an interview with the IMI Programme Office. ‘These are the two pioneering fields where this kind of work started.’ EUPATI, he says, was a major step forward when it was launched in 2012.
‘EUPATI was the first project where IMI consciously did something with patients, for patients,’ he says. ‘It's not about medicine development or technology, it is specifically for patient education in a public private partnership form, which at the time was very new.’ EUPATI has enjoyed success, with 154 graduates, several courses per year for patients, industry and academia representatives, and expansion into 19 countries.
In the interview, Tamás looks back on his own experiences of patient advocacy, which started when he was diagnosed with HIV 15 years ago. ‘I got very scared, and I suddenly realised that there wasn't any information available in my native Hungarian. So I started by translating stuff and publishing it on my blog and then I made a website… Step by step I became an advocate; I realised that this is actually my calling. So I started by disseminating information and then I became a member of the European Aids Treatment Group and then one thing followed the other.’
Participants Show participants on map
- Abbvie Inc, North Chicago, Illinois, United States
- Bayer Aktiengesellschaft, Leverkusen, Germany
- Glaxosmithkline Research And Development LTD., Brentford, Middlesex, United Kingdom
- Novartis Pharma AG, Basel, Switzerland
- Novo Nordisk A/S, Bagsvaerd, Denmark
- Pfizer Limited, Sandwich, Kent , United Kingdom
- UCB Biopharma SRL, Brussels, Belgium
Universities, research organisations, public bodies, non-profit groups
- European Forum For Good Clinical Practice, Brussels, Belgium
- Forum Des Patients Europeens, 1040, Belgium
- Irish Platform For Patients' Organisations Science And Industry Limited By Guarantee, Dublin, Ireland
- Kobenhavns Universitet, Copenhagen, Denmark
- European Aids Treatment Group Ev, Duesseldorf, Germany
- European Patients’ Forum (EPF), Brussels, Belgium
|Name||IMI funding in €|
|European Aids Treatment Group Ev||31 488|
|European Forum For Good Clinical Practice||44 476|
|Forum Des Patients Europeens||188 340|
|Irish Platform For Patients' Organisations Science And Industry Limited By Guarantee||97 189|
|Kobenhavns Universitet||3 750|
|Total Cost||365 243|