EFOEUPATI

Ensuring the future of EUPATI beyond 2020

Summary

The EUPATI project (2012-2017) project resulted in a patient training programme, an online toolbox on medicines research and development (R&D) and a network of platforms organising EUPATI activities across Europe. The Ensuring the Future Of EUPATI (EFOEUPATI) project (2018 -2020) was launched to ensure the optimal exploitation and sustainability of EUPATI’s core achievements. EFOEUPATI resulted in the creation of an independent non-profit foundation and a viable long-term business model for the EUPATI programme, thus ensuring EUPATI will be able to address the growing need for patient education and patient engagement in medicines research and development well into the future.

Long-term thinking: a business plan and a foundation

Medicines R&D is a complex process that is difficult to understand for the majority of patients and the general public. In order to bridge that gap, the European Patients’ Academy on Therapeutic Innovation (EUPATI) developed an in-depth training course, an online toolbox and a network of national platforms that can equip people to better understand and make decisions about their treatments. This in turn helps to put patients’ needs at the heart of drug development. 

EUPATI was designed to trigger a major rethink in the way patients and the public understand the medicines development process and their own involvement therein. Armed with a deeper understanding, patient experts and advocates are empowered to work effectively with regulators and other relevant authorities, healthcare professionals, academic researchers and industry to influence the medicines development process for the benefit of patients.  

The EFOEUPATI project has ensured that that the impact of EUPATI will be sustained and strengthened by putting in place a business model for its medium- to long-term future. As part of the business model, EFOEUPATI identified and implemented new funding streams. A mixed business model comprises different interconnected funding streams which will sustain core EUPATI activities while also allowing its scope to expand and reach even more patients and stakeholders.

During the EFOEUPATI project, the partners carried out a number of activities to validate the business model and helped to refine and finalise the sustainability plan. The independent non-profit EUPATI Foundation was established in the Netherlands, and stands ready to serve the growing societal demand for gold standard patient education across the world.

New web portals

New EUPATI Patient Education and Engagement Portals were designed and launched to host relevant information and resources for patients and other stakeholders to ensure meaningful and value-adding patient engagement in medicines R&D. The EUPATI main portal provides information and guidance about the training and education, the EUPATI Online Toolbox offers a large library of resources in multiple languages to the general public and the EUPATI Collaborate Portal provides opportunities for collaboration with EUPATI and its network.

National and regional networks boosted

The EUPATI National Platform (ENP) Network was strengthened, and regional groupings for ENPs were established in order to provide a support infrastructure for the network members and supercharge the power of their initiatives while enabling cultural connections. Communication tools were developed, training was made available, and best practices and guides were disseminated among the members. A communication toolkit and common ENP messages package was developed and shared widely within the network, with each tool adaptable to individual country contexts.

Next steps

EUPATI is globally recognised as a dependable and neutral knowledge hub that provides trusted, state-of-the-art, user-friendly educational resources that allows regular people to work towards better outcomes for patients alongside researchers, regulators, industry representatives and policymakers.

The training programme is being transformed into an online, on-demand, modular course that will allow learners to work at their own pace and select modules that meet their individual needs. The EUPATI Open Classroom will ensure that more patients, patient representatives and other stakeholders are trained in medicines R&D. Meanwhile a EUPATI ‘matchmaking’ service will be deployed to help bring research and development projects together with trained patient experts.

Achievements & News

EUPATI launches new e-learning platform for patients

Patient education initiative EUPATI has launched the EUPATI Open Classroom, an e-learning platform that will expand access to the EUPATI Patient Expert Training Programme. ###The course started life under the IMI project EUPATI as a 14-month course on medicines research and development combining online and face-to-face learning. Graduates receive a certificate and are known as EUPATI Fellows, and the skills and knowledge gained allow them to contribute to medicines R&D in a wide range of ways.

EUPATI received additional funding from EIT (European Institute for Innovation and Technology) Health to transform the training content into smaller units following a MOOC (‘massive open online course’) format. This new version of the programme is now available via the EUPATI Open Classroom.

Access to the EUPATI Open Classroom is open to anyone in the world. Those who want to become a EUPATI Fellow can still do so by registering as a learner and following the full programme and attending two training events. However, it is now also possible to register as a learner and choose and complete individual courses. There is no fee for accessing the courses, however, those who want to complete the assessment (and receive a certificate if they pass) will have to pay a small fee. Registered learners can follow courses at their own pace, and track their progress via a personalised dashboard.

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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.’

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Participants

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EFPIA companies
  • 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, 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
Patient organisations
  • European Aids Treatment Group Ev, Duesseldorf, Germany

Participants
NameIHI funding in €
European Aids Treatment Group Ev31 488
European Forum For Good Clinical Practice44 476
Forum Des Patients Europeens188 340
Irish Platform For Patients' Organisations Science And Industry Limited By Guarantee97 189
Kobenhavns Universitet3 750
Total Cost365 243