EUPATI Celebrates its 10th Anniversary
Improving health outcomes since 2012
The European Patients’ Academy on Therapeutic Innovation (EUPATI) is committed to improving health outcomes through the contribution from patients and patient representatives as valued stakeholders in the medicines R&D process.
EUPATI provides accessible, innovative and inclusive education empowering patients and patient representatives with the right knowledge, skills and competencies to effectively engage and partner with all other stakeholders.
EUPATI was launched on 01 February 2012 as a project funded by the Innovative Medicines Initiative (IMI) that would last until 2017. The European Patients’ Forum (EPF) further hosted the project until EUPATI was established as a foundation in the summer of 2020.
2012-2017 : Early stages of public-private partnership supporting patient education
It all started in 2012 when a winning consortium, co-lead by EFPIA (European Federation of Pharmaceutical Industries and Associations) and the EPF, joined forces and launched an IMI-funded project. EUPATI was thus developed by a multi-stakeholder team of 33 organisations, including patient organisations, EFPIA members, academia and regulatory authorities.
Forming a multi-stakeholder and collaborative approach, EUPATI was also innovative in its way to trigger a major rethink in the way patients and the public understand the medicines development process and their own involvement within:
“In 2012, patient involvement in research and development was already reality in some therapeutic areas, but mostly seen as an unnecessary burden to those who thought they already knew best what research and medicine should do and what patients should want. At the start of the project, there was little and very unstructured collaboration between patient advocates, academia, pharma and regulators – silos in healthcare were the norm, and effective public private partnerships were the exception.” Jan Geissler (former EUPATI Project Coordinator, Patvocates).
The main objectives of the project were to:
- Develop and disseminate accessible, well-structured, comprehensive, scientifically reliable and user-friendly educational material for patients on the processes of medicines research and development.
- Increase the capacity of “patient experts” and well-informed patients in patient organisations to be effective advocates and advisors in medicines research and development.
- Empower patients to provide appropriate patient-relevant advice and insight to industry, academia, establishments and ethics committees.
To achieve these objectives, EUPATI came up with two core products: the Patient Expert Training Programme and the Online Toolbox on Medicines R&D. The Patient Expert Training was a 14-month long programme on the end to end process of medicines R&D, providing expert-level knowledge and certificate as ‘EUPATI Fellow’. The Toolbox was launched in 2016 and was addressed to patient advocates, patients and health-interested lay public.
Finally, the network of EUPATI National Platforms (ENPs) was initiated during this stage. The ENPs locally bring patient, academic and industry partners together to discuss patient education and patient involvement in medicines research and development (R&D).
Under IMI, EUPATI paved the way for better patient education and patient engagement in medicines R&D. Its educational trainings and tools were made accessible and became a key resource for any kind of medicines R&D that relies on meaningful input from knowledgeable patients, patient organisation representatives, patient advocates and patient experts.
2017-2020 : Building sustainability
From 2017 until 2020, EUPATI was hosted by the European Patients’ Forum as an educational programme. It benefited from the IMI-funded project “Ensuring the Future of EUPATI” (EFOEUPATI, 2018-2020) and focused on the sustainability of EUPATI ensuring the continuation of patient education in mid- and long-term:
“After the end of the IMI project, we were facing a challenging time to find a good solution for the sustainability of EUPATI. Thanks to some additional funding from IMI and the continuous support from many public and private partners of EUPATI a business model could be developed, finally resulting in the establishment of the EUPATI foundation. The EUPATI products and their usage are a clear proof of the need and their quality. The experiences of the more than 200 fellows of the patient expert training course, the 5 million users of the toolbox, the 23 national platforms (ENPs) and the participants in the new trainings for professionals speak for themselves” Matthias Gottwald (formerly Bayer).
The EFOEUPATI project was co-led by EPF and Bayer and had the following main objectives:
- Develop a sustainable business model for the future of EUPATI activities in the medium term
- Create a patient education and engagement portal that will host relevant information and resources of patients and other stakeholders
- Strengthen the coordination and impact of the existing ENPs
After 24 months of collaborative work and input from a large number of partners, this second phase proved successful as EUPATI was registered as an independent entity in August 2020.
2020-ongoing : Full independence
The initial EUPATI project and the continued support via EFOEUPATI had laid solid grounds for EUPATI to thrive on its own. On 11 August 2020, EUPATI was established as independent non-profit Foundation in the Netherlands. Demonstrating exponential growth in all of its activities, EUPATI continues its work to further strengthen the patient voice through education and training. For the future, EUPATI aims to maximise the accessibility to its training platforms and resources while delivering on its leadership position in innovative patient education.
“It’s important to recognise all the people who have been involved in helping EUPATI reach this incredible 10-year milestone; a strong partnership and belief has been central to success. When I reflect on the early ambitions and where EUPATI is now, I feel proud of the numerous achievements and EUPATI’s ability to enhance patient engagement in medicines research and development through education.” Kay Warner (Patient Engagement Lead, GSK & EUPATI co-chair )
By 2020, the Patient Expert training had run for four cohorts until it was transformed into EUPATI Open Classroom with a flexible, on-demand and accessible programme and updated content. New cohorts of EUPATI trainees yearly use the Open Classroom modules to become EUPATI Fellows. The Toolbox now freely provides content in 13 languages (articles, presentations, webinars, images, factsheets, infographics, glossary items and acronyms). As of 2022, over 5 million unique users have accessed the Toolbox. It has become the key knowledge resource and reference for any party interested in learning about medicines R&D. Finally, the network EUPATI ENPs is now present in 23 countries.
1- 5.4 million unique users of the Toolbox. The Toolbox is a free-to-use online resource available in 13 languages. The content of the toolbox is constantly improving and updated. Users can find articles, infographics, webinars, videos etc. in the following subjects:
- Basics of Medicines R&D
- Clinical Development / Trials
- Drug Discovery
- Personalised Medicine
- Regulatory Affairs
- Benefit and Risk Assessment
- Pharmaceutical Development
- Safety of Medicines
- Non-Clinical Studies
- Types of Medicines
2- Creation of the Open Classroom. The EUPATI Open Classroom was launched in 2020, as a new format of the EUPATI Patient Expert Training Programme. The EUPATI Open Classroom is a flexible, on-demand e-Learning platform allowing more patients, patient representatives and other stakeholders from anywhere in the world to access expert-level training in medicines research and development (R&D). Accessible learning modules follow the EUPATI Patient Engagement Roadmap and take the learner through non-clinical and clinical development to regulatory affairs and HTA processes. The EUPATI Open Classroom was supported by the EUPATI Reload project, funded by EIT Health. There are already over 400 Open Classroom learners who have registered since the launch.
3- A growing community of EUPATI Fellows. Each year EUPATI welcomes a new cohort of trainees who can become EUPATI Fellows if they complete all the Open Classroom learning modules and attend two training events. EUPATI Fellow is today a widely well-known label within the patient engagement landscape and they are highly sought-after partners by different stakeholders. As of 2021, more than 200 Fellows have graduated from the programme, coming from 38 countries.
4- International network of EUPATI National Platforms. Since 2012 EUPATI has developed a network of 23 National Platforms established in 23 countries. National Platforms gather patients, academia and industry representatives to raise awareness on patient education and patient involvement in medicines R&D nationally. They operate independently but are driven by EUPATI’s vision and mission.
5- Successful partnerships . EUPATI works closely with its 36 partners representing patient organisations, not-for-profit and academic institutions and pharmaceutical industry. This public-private partnership gives a unique approach to EUPATI’s mission to support meaningful patient engagement through education.
6- Bringing Patient Experts and Researchers together: EUPATI Connect. Early 2022 EUPATI launched a new platform connecting EUPATI Patient Experts (EUPATI Fellows and EUPATI Open Classroom learners) with researchers looking to involve patients in various projects (e.g. protocol reviews, focus groups, speaking opportunities, patient advisory boards, ethical committees or regulatory processes). EUPATIConnect is a place where both EUPATI Patient Experts and researchers can build new connections, create synergies and mutually beneficial opportunities to enhance patient engagement.
7- Training of stakeholders. Since 2019, EUPATI has provided training on patient engagement to professionals from academia and industry. These trainings are co-created and co-delivered by patients, structured around problem-based learning and based on real-life examples. To date, more than 500 individuals have benefited from these trainings and new modules are under development.
8- Cross-stakeholder collaborations. In addition to its Sustaining Partners, EUPATI collaborates with a wide range of stakeholders within the patient education and patient engagement landscape. EUPATI engages in close collaboration with e.g. IHI, PFMD, EMA and national regulatory agencies, HTAi and several other organisations.
9- Establishing governance as an independent foundation. EUPATI functions today as an independent, non-profit organisation in the Netherlands. Its governance structure reflects the spirit of a true public-private partnership and has representatives of patient organisations, non-profit/academic institutions, industry, regulators and HTA in its decision-making bodies.
10- International Virtual Secretariat. The EUPATI Team is led by the Executive Director and currently consists of 10 individuals from various backgrounds and countries. The EUPATI Secretariat benefits from this diversity in its commitment to enhance patient education and patient involvement.
“EUPATI is a true success story demonstrating the strength of multi-stakeholder collaboration driven by a shared objective. The establishment of EUPATI as a non-profit independent foundation was a key milestone in our 10-year journey and it would not have been possible without the substantial contributions of our partners and wide networks of the EUPATI Fellows and National Platforms. We will continue to expand our activities, building on our shared vision and mission, to enhance patient engagement through education in Europe and beyond” (Maria Dutarte, EUPATI Executive Director).
EUPATI Celebrates its 10th Anniversary
Celebrate with us !
On 19-20 May, EUPATI Partners, National Platform representatives, EUPATI Fellows and key individuals who have contributed to EUPATI’s success story over the years gathered in Brussels and online to celebrate our 10th anniversary.
Over 140 participants were present (on and off line!) to reflect on EUPATI’s key achievements, to discuss the challenging and evolving landscape of patient education, how to strengthen partnerships and achieve sustainability, the incredible work of the EUPATI National Platforms and the vision for the future. On the second day, the participants were invited to take part to two different workshops “Diversity & inclusion in health literacy” and “Changing role of patient experts and needs for further training & education”.
EUPATI is now even more inspired to continue its mission to improve patient education to answer the need for more collaboration between patient advocates, academia, pharmaceutical industries.
Pictures by ©Pauline Caplet
Message from Nicola Bedlington (EPF, Former EUPATI Co-Chair)
“It is hard to believe that EUPATI is 10 years’ old! And I am so honoured and proud to have co-led this unique Public Private Partnership, on behalf of EPF, from its beginnings until 2020 when it became an independent foundation. My Co-Leader was Matthias Gottwald, from Bayer and I remain grateful for his unstinting support, vast knowledge, and sense of calm, regardless of the challenges – and there were many.
The seeds of an idea for a specific project dedicated to patient education grew in 2010. The Patient Partner Project was an inspiration. There was also a big “Aha’” moment in an IMI Scientific Advisory Board meeting, during which I presented, on behalf of EPF, the status quo in IMI on patient engagement, the huge opportunities to scale, and the fundamental need for more patient education on the A to Z of medicines development.
Over the years, we were privileged to have three outstanding directors: Jan Geissler; Matthew May, and Maria Dutarte, each taking the project to a new level. We also had some incredible leaders from the patients’ community, academia, and industry who shaped and nurtured EUPATI and ensured the quality stamp it enjoys today – they are too many to mention but they know who they are!
It was no plain sailing. We had to build a curriculum from scratch and develop major content, address technical and language challenges, overcome attacks from media, doubts at times from regulators and a major sustainability headache to deal with at the end of the 5-year project in 2017. By then, EUPATI had proven its immense value but finding a long-term solution to continuing the programme, reaching more patient advocates and experts in more languages across Europe and beyond was not obvious. EPF hosted EUPATI during a bridging phase from 2017 -2020 as partners put together a viable plan, and the EUPATI foundation was born.
True collaboration has been a trademark during this journey – with EIT Health, with EUPATI’s sister IMI project PARADIGM and the establishment of the Patient Engagement Open Forum, together with EPF and PFMD, and many other partnerships across the entire EUPATI community in so many countries worldwide.
I wish EUPATI all the best over the next 10 years – I will remain a friend and will enjoy seeing it go from strength to strength in a new era for patient engagement in a European Health Union.”
Message from Jan Geissler (Patvocates, Former EUPATI Coordinator)
“Happy birthday, EUPATI! It’s been exactly 10 years since we kicked off the EUPATI on 1 February 2012. Thanks to funding by the EU’s Innovative Medicines Initiative (IMI), we were able to kick off this mindboggling, courageous and ambitious project where 33 organisations, driven by a bunch of passionate people, were determined to empower the patient community with training to become equal partners in medicines development.
In 2012, patient involvement in research and development was already reality in some therapeutic areas, but mostly seen as an unnecessary burden to those who thought they already knew best what research and medicine should do and what patients should want.
At the start of the project, there was little and very unstructured collaboration between patient advocates, academia, pharma and regulators – silos in healthcare were the norm, and effective public private partnerships were the exception.
So we set our ambitious goals: develop a patient expert training course and an open-access educational toolbox to train 100 patient experts in depth in a Training Course, to reach 12.000 patient advocates with a web-based Toolbox, and to reach out to 100.000 health-interested citizens within 5 years. 12 countries, 6 languages, At the start of the project, this seemed highly visionary but almost undoable.
Compare the numbers in the graph what EUPATI has accomplished, driven by passion, determination, resilience, collaboration, and going the extra mile. Happy birthday, EUPATI, and thank you, Nicola Bedlington, Matthias Gottwald, Matthew May, Ingrid Klingmann, Wolf See, Michel GOLDMAN, Kay Warner, Bella Starling, John Lenehan, Liuska Sanna, Niels Westergaard, David Haerry, Tamás Bereczky, Giorgio Barbareschi, Eibhlin Mulroe, Per Spindler, Kim Wever, Ingrid Jenisch, Veronica Foote, Christine Mullan-Jensen, Ingrid Heyne, Walter Atzori, Nancy Hamilton, Jytte Lyngvig, Barbara Haake, Laura Kavanagh, Lode Dewulf, Daphnee Pushparajah, Karen Facey. Nadia Naaman, just to name some of the people of the early years who were always pushing the limits to get EUPATI done – and the list of all fantastic people would fill pages that have contributed and driven EUPATI forward in the executive committee, workgroups, advisory groups and national platforms.
EUPATI has not only given birth to a training academy, it has moved the needle, changed the ecosystem, put patient involvement on the agenda. Happy birthday, EUPATI, and for those who drive the EUPATI Foundation now, led by Maria Dutarte, and those who support EUPATI to grow to the next level – looking forward to the great things to come in the next 10 years. We’ll be friends and supporters of EUPATI forever!”
Message from Matthias Gottwald (Formerly Bayer, EUPATI Co-Chair)
“10 years EUPATI – what an exciting and rewarding journey. I had the pleasure and honour to be involved in this journey from the very beginning.
I remember that in 2011 Ingrid Klingmann informed us – a group of colleagues from EFPIA companies – about the results of the PATIENTPARTNER project, calling for more patient engagement in medicines’ R&D and the respective empowerment of patients. As also on the industry side the interest to involve patients earlier in the development process was growing, we launched an IMI project to establish high quality training opportunities for patients on the processes behind R&D for innovative medicines and other therapies. Together with the winning applicant consortium under the great leadership of Nicola Bedlington (EPF) and with Jan Geissler as project manager – keeping us always on track – we started the EUPATI project with a fantastic team of experts from 33 organisations including patient organisations, EFPIA members, academia and regulatory authorities. It is impossible to list all colleagues who contributed but I would like to thank exemplarily Barbara Haake, who worked with me as industry co-lead, Kay Warner, Matthew May, Ingrid Klingmann, Per Spindler and Wolf See.
In the beginning we were facing scepticism, e. g. in Germany, if such a partnership of patients with industry can work on eye-level, but it took us only a few months to grow together as a team and work trustfully and constructively. The thorough content development and multistakeholder review processes established in that time have become a success factor of EUPATI and are still the basis for the work of EUPATI.
After the end of the IMI project, we were facing a challenging time to find a good solution for the sustainability of EUPATI. Thanks to some additional funding from IMI and the continuous support from many public and private partners of EUPATI a business model could be developed, finally resulting in the establishment of the EUPATI foundation.
The EUPATI products and their usage are a clear proof of the need and their quality. The experiences of the more than 200 fellows of the patient expert training course, the 5 million users of the toolbox, the 23 national platforms (ENPs) and the participants in the new trainings for professionals speak for themselves.
But it will be an ongoing task to adapt the training opportunities to the changing environment and needs. I am thankful that we could get public funding from EIT Health in 2020 and 2021 to transform the expert training course into the “Open Classroom”, the already well used e-learning platform, and to expand the content towards the areas of medical devices and digital health. This change process will not end, and I wish the EUPATI team around Maria Dutarte all the best for steering the foundation through this future journey. May the force of the growing EUPATI family always be with you!”