While patients are keen to have access to better and safer treatments, many find it hard to understand the benefits and risks of novel therapies. With demand for healthcare rising, and a growing emphasis on both the quality and sustainability of healthcare services, there was a proven need for information resources, designed specifically for patients and the public, on how medicines research and development (R&D) and clinical trials are conducted. By bringing together major patient organisations, academic institutions and industry partners, EUPATI set out to address this major gap in public perception and knowledge.
One of the main project outputs is the development of the Patient Expert Training Course – a 14-month in-depth course for patient advocates on medicines R&D. Almost 100 patients from 32 countries and 58 disease areas have already graduated from the course, and more are on the way. In order to multiply the effect of this course, the project has also developed a ‘train-the-trainer programme’.
Toolbox and national platforms
Another important project output is the toolbox on medicines R&D which is available in eight languages on the EUPATI website. It includes articles, presentations, videos, webinars, factsheets, and much more. It already has been used by more than 500 000 people worldwide.
The project also established 18 national platforms which are based on the same model as EUPATI. By organising educational webinars, information days, workshops, and social media campaigns, the platforms have enabled patients on a national level to become more involved in medicines R&D, and regulatory affairs.
Guidance documents and other achievements
Other important project outputs include:
- guidance documents for the engagement of patient organisations in industry-led R&D, health technology assessment bodies, regulatory processes, and ethics committees;
- the organisation of interactive annual conferences and workshops which have attracted about 1 200 participants, about 50% of them patient advocates;
- the organisation of educational webinars on a variety of relevant topics.
Patient voices already being heard
Through all these activities, EUPATI has been a catalyst for patient involvement in medicines R&D and continues to be one of the key drivers of the public debate on this topic in Europe and beyond. EUPATI fellows are engaged in regulatory committees, as speakers on medical conferences, and are participating in regulatory and ethics committees. As a result, clinical trials are changing shape, trial outcomes are being defined differently, and patient voices are being heard in regulatory discussions.
Patients are also benefitting from a large patient network which was established as part of this project. Patient organisations are usually volunteer-driven, low-resource organisations and before EUPATI they didn’t have the capabilities to work together across different disease areas. Thanks to EUPATI, this has finally changed, and has been a game-changer in patient advocacy.
Benefits to academia and industry
The academic community benefited from the project by getting a neutral platform to collaborate with the industry, regulators and patient organisations. Also, a lot of publications co-authored by academics were published in high-impact journals which contributed to increasing their reputation and visibility.
The industry benefited from the collaborative network that was established, and from having access to patients who are familiar with all the aspects of R&D and can help in the drug development process with their perspective.
Even though the project ended, thanks to a three-year sustainability plan, the main project outputs (the course, the toolbox, national platforms) continue to be maintained. Furthermore, several project partners are continuing to collaborate and initiate new projects.
Read the interview with project coordinators
Achievements & News
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.
Find out more
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.
Find out more
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.’
Find out more
The Patient Engagement Open Forum is organised jointly by IMI’s PARADIGM and EUPATI projects as well as Patient Focused Medicines Development (PFMD). ###The aim of the event is to provide a holistic perspective of patient engagement, the landscape and actors, and foster collaboration and co-creation while breaking down fragmentation and silos that are often present in patient engagement work.
This year, the event is going virtual, and will be a series of short (under two hours) online events running from June to November. Events will be recorded and published online.
Topics range from tools and recommendations for effective patient engagement, methods for monitoring and evaluation of impact and outcomes in patient engagement activities, and fair market compensation for patient input, to interactive sessions on assessing good practices in patient engagement and more.
Find out more
- Visit the event website
Since its inception, IMI has supported almost 150 different research projects. That’s 150 teams of problem-solvers working together in the spirit of what we like to think of as ‘radical collaboration’. For 12 years, these projects have been producing toolboxes of new technologies, spreading best practices, training, skill-building and sharing not just their knowledge but also their valuable data.###
Their results have had a real impact on medicines development, helping European medicine developers better understand diseases, identify targets for new drugs, build biobanks, validate biomarkers and models, and much more. They’ve also had a big socio-economic impact, meaning they’ve been shown to have a positive effect on society, business and public policy.
Some of the projects that were launched in the early days of the partnership are still going strong in one form or another, and their lasting impact can be seen through follow-on projects, start-ups that were born from the outcomes of the projects, or innovative tools that have become staples in the medicines development community.
To pay homage to the longevity of those projects, and to celebrate our birthday (IMI turns 12 in April) IMI is featuring some of these projects on Twitter. Read more about them (and view the tweets) in the following news items:
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.’
Drug-makers have only recently started to give drug-takers a say in how their medicines are made, turning patients into a new generation of experts. Why has medicine taken so long to consult its end users? In an opinion piece on the IMI website, Executive Director Pierre Meulien sets out how IMI works to promote patient involvement in R&D. ###For example, our EUPATI project, which set up a training academy to teach patients and the people who care for them the basics of drug development; was the first of its kind for European patients. EUPATI was followed by the launch of a number of research projects that are establishing the goals and ground rules for citizen involvement in the high-stakes world of making medicines. At the IMI Programme Office, we recently set up a pool of around 150 patients and carers who contribute to our activities as experts in their own right. Among other things, they are invited to take part in project reviews, contribute to consultations and assess project proposals. ‘Drug development is an enormously complex process, and at the other end of the process is a human being,’ Dr Meulien concludes. ‘As another of our patient advocates once remarked: “Nothing about us without us!”, a sentiment we fully support.’
On 18-19 September, IMI projects PARADIGM and EUPATI are joining forces with Patient Focused Medicines Development (PFMD) to organise the Patient Engagement Open Forum in Brussels, Belgium. ###The aim of the event is to provide a holistic perspective of patient engagement, the landscape and actors, and foster collaboration and co-creation while breaking down fragmentation and silos that are often present in patient engagement work. The agenda offers a deep dive into some ongoing patient engagement work done by many collaborative initiatives. Topics range from tools and recommendations for effective patient engagement, methods for monitoring and evaluation of impact and outcomes in patient engagement activities, and fair market compensation for patient input to interactive sessions on assessing good practices in patient engagement and more. Registration is free but obligatory.
What are your thoughts on patient engagement in medicines development? IMI’s new PARADIGM project focuses on patient engagement within three distinct phases of the medicines lifecycle: research priority setting; design of clinical trials; and early discussions with regulators and health technology assessment (HTA) bodies. It has now launched a survey ###with the goal of understanding the needs and expectations of people who are involved in who are involved in this growing area.
Patient engagement in biomedical research is extremely important. Yet this engagement must be meaningful and that is one of the key goals of the PARADIGM project. By building on existing tools and filling knowledge gaps, awareness of these will be heightened among the broader patient, industry, and research communities. This will ultimately create a sustainable roadmap for patient engagement.
EUPATI built a much-needed programme for patient involvement in medicines research and development, and has been a game changer for patient empowerment in Europe, building a movement that will long outlive the project itself. In an interview with the IMI Programme Office, project coordinator Jan Geissler of the European Patients Forum, and Matthias Gottwald of Bayer explain how patients in Europe and beyond are benefitting from the work that was done.### ‘EUPATI has been a game-changer in the empowerment of patients because we can see people trained by EUPATI almost everywhere, be it in regulatory committees, industry-led research projects and clinical trials, academic projects or ethics committees,’ said Geissler. ‘We can clearly see the difference that this empowerment makes. For example, before training patients are usually not involved in these kinds of committees and research projects, and after the training they suddenly get engaged. The final goal is to improve the outcomes for patients and that’s why involving patients in R&D, clinical trials design and regulatory decisions is absolutely crucial. We’ve achieved that and we can see a change already.’ Full interview
Applications are now open for the third cycle of the EUPATI Expert Training Course, which will run from September 2017 to December 2018. The course is an exciting and unique opportunity that offers patient advocates expert-level training in medicines research and development, specifically tailored for them.### The course features a mix of online and face-to-face learning and includes modules on: discovery of medicines & planning of medicines development; non-clinical testing and pharmaceutical development; exploratory and confirmatory clinical development; clinical trials; regulatory affairs, medicinal product safety, pharmacovigilance and pharmacoepidemiology; health technology assessment principles and practices. The deadline for applications is 31 March 2017.
The EUPATI project has published a set of guidance documents to facilitate patient involvement in research and development (R&D). The documents focus on interactions between patients and regulatory agencies, health technology assessment (HTA) bodies, ethics committees and the pharmaceutical industry.### The guidance documents suggest approaches to allow structured interaction with patient organisations on the national and European level and will support the integration of patient involvement across the entire process of medicines research and development. The guidance documents were developed on the basis of an extensive consultation with patient advocacy groups, regulators, pharmaceutical companies, HTA bodies, academic groups and clinicians, and incorporate feedback gathered during these reviews.
Patient education project EUPATI has launched a public consultation to review the guidance it has developed on patient involvement in the medicines research and development process. The guidance is divided into four distinct frameworks:###
- patient involvement in industry-led R&D
- patient involvement in health technology assessment (HTA) bodies
- patient involvement in regulatory processes
- patient involvement in ethics committees (to follow by end of July 2016)
They were developed in response to the growing need to draw on the experience and specific knowledge of patients, and their day-to-day use of medicines, in order to improve medicines development and evaluation. The frameworks suggest approaches to allow structured interaction with patients, and thereby facilitate the exchange of information and constructive dialogue at national and European level where the views from users of medicines can and should be considered.
The four frameworks have already received feedback from a number of partners of the EUPATI consortium (including patient organisations), but further evaluation and feedback from patient organisations and other key stakeholders are essential in order to validate the guidance. Individuals and groups are invited to contribute to the review by commenting directly on the framework documents, which can be downloaded from the EUPATI website. The consultation will close on 15 September.
IMI’s patient education project EUPATI has launched an online educational toolbox on medicines research and development (R&D). Designed for patients, patient groups, and anyone interested in learning more about medicines R&D, the freely-accessible toolbox includes materials covering drug discovery, clinical development, regulatory affairs, medicines safety, pharmacovigilance, and health technology assessment.### The toolbox is available in seven languages: English, French, German, Spanish, Italian, Polish and Russian. It was designed by patients in collaboration with experts from other stakeholder groups such as academia and industry. Birgit Bauer, who has multiple sclerosis and recently graduated from the EUPATI Patient Expert course, welcomed the publication of the new website. ‘From my perspective, the EUPATI toolbox provides an objective, reliable and up-to-date resource for patient education on medicines R&D,’ she said. ‘The multilingual materials deliver a wealth of patient awareness materials and an understanding on the opportunities patient advocates have to strengthen their voice and to get actively involved in the process.’ The need for the new toolbox is backed up by recent EUPATI research which reveals that pharmaceutical industry personnel believe patients can improve medicines research and development. The study is published in the journal BMJ Open.
- Watch a video about the new toolbox.
The European Patients‘ Academy on Therapeutic Innovation (EUPATI) will hold a webinar on ’Interaction between patients and other stakeholders in medicines development’ on 16 November 2015 from 17:00 to 18:30 Central European Time (CET).###
This webinar will focus on the interaction between patients and the other stakeholders active in the medicines development process. More information and details of how to register will follow shortly on their website.
EUPATI is a pan-European IMI project of 33 organisations, led by the European Patients' Forum, with partners from patient organisations, universities and not-for-profit organisations, along with a number of European pharmaceutical companies.
The project focuses on education and training to improve the availability of patient-friendly information for the public as well as for more advanced patient advocates and patient experts with the capacity and capability to understand and contribute to medicines research and development. The project recently opened its second Patient Experts Training course and is looking forward to interacting with 60 highly-motivated people from more than 20 countries in Europe.
EUPATI's Patient Expert Training Course educates patient advocates about the whole medicines research and development process over a period of 14 months. After six months of e-Learning, the first face-to-face part of the EUPATI course turned out to be a huge success.### The five-day training event, held at the end of March in Barcelona, Spain, covered topics as diverse as medicines regulation, clinical trials, statistics, evidence, and ethics. It also featured "mock" ethics panel meetings and pharmacovigilance risk assessment meetings. The students have been following the course via distance learning since autumn 2014, and will continue to study this way until the second face-to-face training meeting in September. They will graduate in November 2015. The course is designed to provide patient advocates with the knowledge and skills to participate effectively in medicines research and development.
‘I am deeply impressed by this group of highly engaged patient advocates from 21 countries all across Europe, who are investing a significant share of their volunteer time over a period of more than a year to become knowledgeable patient experts in medicines R&D,’ commented EUPATI Director Jan Geissler. ‘The great spirit, the depth of discussions and the energy level every day was truly inspiring and is an amazing reflection of the power of patient advocacy.’
He added: ‘We are receiving lots of constructive feedback - very positive, as well as lots to learn from and improve for our next course, not surprising as this is a pioneer course - the first of its kind.’ Applications for the 2015/16 EUPATI course have now closed; the project received 187 applications for 60 places. The project is also developing a range of online information and educational materials for patients and patient advocates which will launch in seven languages by the end of 2015.
A research paper by IMI’s EUPATI project reveals that the majority of people in Europe (three quarters) have either no or ‘less than good’ knowledge of medicines research. However, people who have been involved in medical research themselves generally have much greater knowledge of medicines research.### The findings, published in BMJ Open, are based on a survey of 7 000 people across Europe. The study also questioned participants on their interest in learning more about medicines research and development. The most popular areas (with around half of participants showing interest) were medicines safety, personalised medicine and predictive medicine.
‘We are all potential patents,’ said Kathy Oliver, Co-Chair of EUPATI’s Project Advisory Board and Chair of the International Brain Tumour Alliance. ‘This possibility emphasises the crucial need for the general public to really understand the numerous stages of medicines development and realise the complex processes that take place before a medicine is available for general use. EUPATI’s newly-published paper throws a fascinating light on what people already know about medicines research and development, and where the gaps are. In addition, the paper’s findings are of great value to us as patient advocacy groups because they validate the need for organisations like ours to help increase public knowledge and awareness about medicines research and development.’
Read EUPATI’s press release
Join the patient education project EUPATI in Dublin, Ireland on 22 April for the workshop ‘EUPATI Taking off in Your Country – an Interactive Workshop on Implementing EUPATI in Your Country’. The project is in an exciting phase, as its training courses and materials are coming to life and going online.### The challenge for the project now is to spread the word to patient advocates, patient representatives, and patients, as well as to the project’s academic and industry partners, all at a more local level. The goal of the Dublin workshop is to help identify how to move forward on this, and participants will have an opportunity to discuss, together with consortium members, the current and future strategy for the implementation of EUPATI at the national level. The workshop is open to all stakeholder groups that have a role in the medicines development process - patients, citizens, industry, academia, ethics committees, regulators, medical professionals, journalists, etc. Participation in the workshop is free.
- For further details and registration, visit the event website
Applications are now open for the second round of the EUPATI Patient Expert Training Course, which offers 50 patients and patient advocates expert-level training in medicines research and development. ###The course features a mix of independent e-learning coursework and face-to-face training and will run for 14 months (from September 2015 to November 2016). By the end of the course, participants will have the knowledge needed to make meaningful contributions to patient empowerment and advocacy and to contribute to the broader dialogue on patient involvement in medicines research and development across Europe. The first round of the EUPATI Expert Training Course kicked off in October last year and will run until the end of 2015.
The slides and a recording from EUPATI’s first webinar on ‘Improving involvement of patients in clinical research’ are now available online.###
During the 5 November event, representatives from patient organisations, universities and the pharmaceutical industry gave presentations on how to best include patients in clinical research, the advantages of patient involvement, and gave examples of patient research in their activities. The webinar also included discussions about challenges and barriers to patient involvement, as well as suggestions on how to overcome these issues.
During the webinar, the outcome of EUPATI’s workshop held in July 2014 was also presented. The presentation provided information on efforts to demonstrate the benefits of patient involvement in R&D, implement a framework for patient involvement, and create relevant key performance indicators.
IMI’s patient-led education and training project EUPATI has launched its first Expert Patient Training Course this October for 53 trainees from the patient community.### EUPATI received more than 300 applications from patients and patient advocates wanting to take part, reflecting the demand from the patient community for in-depth training on the medicines research and development (R&D) process. The 15-month training course combines a blended learning approach of online and face-to-face training and covers all aspects of the medicines development process including discovery, development, evaluation, marketing authorisation and post-marketing evaluation. The e-learning platform provides a flexible way for the trainees to work progressively through the six modules, each kicking off with an introductory webinar. Expert tutors from the project will provide ongoing support throughout the course and there are two face-to-face training sessions planned in March and September 2015 to allow discussions about the relevant topics in small groups and in plenary sessions using case reports, news articles and samples of regulatory reports.
A second training course for 50 additional trainees is planned for September 2015 and applications to participate should be made via EUPATI’s website in January 2015 when the selection process is opened. More details on the application process are available here.
More information on the application process that applicants faced for the first selection can be found here.
IMI’s patient education EUPATI is counting down to the launch of its e-learning platform in October. When launched, the platform will be used by the students who have been accepted onto EUPATI’s Expert Level training course.### The platform is already up and running in beta and is currently populated with the learning materials for the Expert Patient online course. The layouts and navigation of the platform, which is built using open-source learning platform Moodle, have undergone testing by community users, and the online course materials are now undergoing a thorough review to verify both the information included and the teaching strategies used.
The EUPATI Expert Training Course will combine online and face-to-face teaching to train patient experts in medicines development. The project received over 300 applications for the first course intake, of which only 55 could be admitted. Applications for next year’s course will open in Spring 2015.
EUPATI, IMI’s education and training project for patients and patient advocates, has recently published a series of infographics on its website summarising the results from its 2013 survey on the public’s knowledge, attitudes and understanding of medicines development. Over 7 000 members of the public from 6 EU countries took part in the survey. ###
Participants rated their current knowledge on medicines development highest on those aspects relating to drug safety, discovery and clinical trials. Almost half of those who responded were interested in learning more about drug safety, personalised medicine and predictive medicine. According to the survey, people felt most comfortable asking for information about drug development from either medical staff or academic and patient organisations, and continue to look to their doctor, the internet and patient organisations as preferred sources of information about medicines research and development.
IMI’s education and training project EUPATI is launching an expert-level course in medicines research and development specifically tailored for patients and patient representatives.### The certificate course will begin in September 2014 and will be a mixture of online and face-to-face education modules over a 13-month period. Details of the subjects covered, the methodology, and the timelines can be found in the Guide for Applicants
IMI’s project European Patients’ Academy on Therapeutic Innovation (EUPATI) has created a catalogue of existing successful working models of public-private partnerships (PPPs) between patient organisations, the pharmaceutical industry and academia.### The catalogue provides examples of successful cooperation, as well as information which can serve as inspiration for future PPPs keen to ensure the involvement of patients in medicines research and development. While not singling out any one model as the best for PPPs, EUPATI’s catalogue provides guidance for the establishment, terms and rules of new PPPs and how to track their progress.
IMI’s EUPATI project (European Patients' Academy for Therapeutic Innovation) is organising a workshop entitled ‘EUPATI: Reaching the General Public on Medicines Development’ on 2 April 2014 in Warsaw, Poland.### The event will address how to best inform patients, patient representatives and citizens, and raise public awareness of the development process of new medical treatments.
The EUPATI workshop is designed to discuss best practices on information sharing, seek input to help shape the EUPATI dissemination strategy and discuss sustainability options.
Above all, this event will be an opportunity to network with up to 150 patients, patient representatives and others to make a difference in connecting with and engaging patients, while helping EUPATI better understand the needs of local communities.
Participation in this workshop is free. Some grants will be available for participants from patient organisations and, in some cases, from academia, to cover travel and accommodation expenses.
- Further information and registration details will be published shortly on the EUPATI website
Patient advocate and EUPATI Project Director Jan Geissler has been presented with a European Outstanding Leadership Award ‘in recognition of his exceptional performance and leadership within EUPATI, in particular by addressing training issues### and by improving the availability of both patient-centric information for the public as well as educating patient experts to have the capacity and capability to contribute to R&D’. The award, handed out annually by the Belgian Association of Clinical Research Professionals (ACRP), is presented to individuals who have demonstrated exceptional performance, achievement and sustained service towards the goals of ACRP and contributed to the advancement of clinical research in general. ‘I feel deeply honoured to accept this award on behalf of my fellow patient advocates as well as the EUPATI team,’ said Mr Geissler. ‘The fact that this award of research professionals is being bestowed on patient advocates, as well as to EUPATI, a partnership of patient organisations, academia and industry, is a reflection of the paradigm shift: patients are increasingly seen as true partners in medicines R&D.’
If you are aware of any examples of models of patients or patient organisations working successfully with clinicians, academia and /or the pharmaceutical industry, the EUPATI project would like to hear from you!### The project is in the process of putting together a catalogue of successful models of these kinds of partnerships. The idea is to use the information to develop models to encourage the greater and more active involvement of patient experts in medicines research and development. By using extensive literature searches, surveys and an online feedback form, they have evaluated over 50 validated examples, but they hope to receive further examples by the end of this year. More information, and details of the survey and feedback form are available here.
Patient education project EUPATI has published the first version of the syllabus for its high-level certificate training course. EUPATI aims to educate patients to enable them to play a stronger role in medicines research and development, for example by contributing to the work of research groups and ethics and regulatory committees.### The new syllabus sets out the training programme for the EUPATI certificate training programme, a 12-18 month course featuring face-to-face and online learning. The course’s six modules cover all aspects of drug development, including clinical trials, regulatory affairs, safety, and health technology assessment. The syllabus benefited from input from diverse stakeholder groups, including patients, academics, ethics experts, industry, and teachers. The courses are expected to start in 2014 and are designed for 100 patient experts.
In addition to the certificate, EUPATI is developing an educational toolbox that patient advocates can download and use to learn about drug development, and an internet library that will provide patients with easy-to-understand information on drug development.
EUPATI, the European Patients’ Academy on Therapeutic Innovation, brought together 183 participants from 28 countries at its first conference in Rome, Italy on 19 April 2013.### IMI’s EUPATI project aims at providing patients with training and education opportunities to enable them to play a role in the medicines R&D process. The conference unveiled EUPATI’s ongoing plans for three areas of training and education: a certificate level course that by 2017 will produce 100 patient experts drawn from across Europe; more generic online education for 10 000 patient representatives; and an Internet library providing information to anyone with an interest in medicines R&D. Attendees heard that the broad outlines of the content of courses and material have been established, but finding the right way of teaching them will prove more of a challenge – as will be selecting 100 people from across Europe for the certificate level course. Even translation can be challenging; for example, some languages do not have a term for ‘randomisation’. Overall, the tone of the meeting was positive, with many speakers noting that there is now a real window of opportunity for effective patient involvement in R&D.
• More information on the conference, including presentations and photos, can be found online
On 19 April 2013, IMI project EUPATI will hold a public conference in Rome, Italy on a vision for patient involvement in medicines research in 2020. The conference is structured around three key questions:###
- What would patient involvement in medicines development look like in 2020?
- How can we build knowledge & competences for patients' involvement in medicines R&D?
- By 2020, what increase can EUPATI predict in public knowledge about development of new treatments?
Participation in the conference is free but places are limited; to apply for a place, fill in the online form.
Over 100 people from 24 countries signed up to IMI Education & Training project EUPATI’s inaugural public workshop, which was held in Frankfurt, Germany in early September.### The goal of the event was to gather feedback on the initial findings of the project, which aims to create a European Patients’ Academy on Therapeutic Innovation. ‘Nothing is set in stone,’ commented Project Coordinator Nicola Bedlington of the European Patients’ Forum. ‘We have a framework and clear ideas, but the input of all participants, being experts with different backgrounds and form different geographical areas, is absolutely vital to shape what we do. The floor is open.’ Items on the agenda in Frankfurt included how to raise awareness of EUPATI, how to establish national platforms, how to enhance the collection of information, and how to ensure that as many patients as possible benefit from the information generated by EUPATI. A full report of the workshop, as well as photos and webstreams from the workshops, are available from the project website
EUPATI (the European Patients’ Academy on Therapeutic Innovation) is inviting people to join the newly-created EUPATI Network.### Open to patients and patient organisations, caregivers, academia, pharmaceutical & biotech companies, journalists, and anyone else interested in finding information on medicine research & development in lay language, the network offers members a number of benefits. In addition to information on EUPATI activities, events and networking opportunities, network members will also receive invitations to participate in EUPATI surveys or focus groups and will have the opportunity to collaborate with other network members, for example on the organisation of national events. Membership of the EUPATI Network is free of charge.
IMI projects EMTRAIN and EUPATI (European Patients' Academy on Therapeutic Innovation) are mentioned in a new report on facilitating international cooperation in non-commercial clinical trials.### The report, by a working group of the OECD (Organisation for Economic Co-operation and Development) Global Science Forum, sets out recommendations to overcome the main barriers facing the international clinical research community in setting up international clinical trials. Among other things, the report highlights the need to improve education and training support as well as the infrastructure framework in clinical research, and to enhance the involvement of patients in trials. EMTRAIN is mentioned in the section on infrastructure support, while EUPATI (which will start soon and is funded under IMI’s 3rd Call for proposals) is highlighted in the section on patient involvement.
EUPATI conference 2016 - save the date!
IMI patient education project EUPATI will hold a conference entitled ‘EUPATI: All aboard to a better health future!’ on 14 December 2016 in Brussels, Belgium. ### More information will be published soon on the project website. To stay up to date with EUPATI’s activities:
- Sign up to their newsletter
- Follow them on Twitter
- Like them on Facebook
EUPATI to hold webinar on patient involvement in HTA
July 2015 - Patient education project EUPATI will hold a webinar entitled 'Strengthening Patient Involvement in Health Technology Assessment (HTA)’ on 28 September ###at 17:00 CET (Central European Time). HTA is a multidisciplinary process that examines the information about medical, cost-effectiveness, social, political, legal and ethical considerations of the application of a health technology – usually a medicine, medical device or clinical/surgical procedure. The main purpose of such an assessment is to inform access policy decision-making, which has an impact on patients, physicians, payers and the broader health ecosystem. The webinar will examine the need for patient involvement in HTA and look at the HTA landscape in Europe. It will also feature a case study and a review of how the EUPATI toolkit can help informed patients engage in HTA. There will also be time to ask questions and engage in discussions.
- Information on how to register can be found here
EUPATI workshop on patients’ involvement in medicines development
April 2014 - IMI’s Education and Training project EUPATI organised a workshop on 2 April in Warsaw, Poland. The event focused on the project’s efforts to increase the general public’s involvement in medicines’ research and development. ###Over 150 representatives of patient organisations, academia, industry and regulatory affairs met to discuss how to best increase the general public’s interest in these topics. The input from the workshop will shape EUPATI’s strategy to reach out to and inform at least 100 000 European citizens with interest in health.
EUPATI-sponsored research presented in Warsaw reveals low levels of knowledge of medicine development across Europe but a growing public interest in the area. Ideas and suggestions from the workshop will help to optimise the communications channels for the right audience. Exploiting the growing potential of social media, and using messages that clearly demonstrate the connection between drug development and patient involvement are at the top of the list. EUPATI’s Internet Library, due to be launched towards the end of 2015, should further engage European patients in the process.
- For more information, read the Workshop press release
- Check out the presentations, videos and the Twitter wall of the workshop here
Meet the IMI Education and Training Programmes
December 2013 - There are five projects within IMI’s research training platform aiming to revolutionise education and training to deliver more effective and safe new medicines for patients – EMTRAIN, Eu2P, EUPATI, PharmaTrain, and SafeSciMET. Collaboration is the key to ###success and equally important is the projects' ability to reach intended audiences with information to raise awareness and encourage people to get involved in project activities.
Over the next six months these projects will be represented at a variety of European and international conferences through display booths, dedicated sessions or individual presentations. If you are planning to attend any of the following events, please take the opportunity to stop by and find out what is happening in the IMI training and education programmes and how you can benefit, either from a professional or personal perspective.
- DIA EuroMeeting 2014 (Vienna, 25-27 March)
- EUPATI Regional Meeting 2014 (Warsaw, 2-3 April)
- World Research and Innovation Congress (Amsterdam, 5-6 June)
- Euroscience Open Forum (Copenhagen, 21-26 June)
BIOVISION and the IMI Education & Training projects
March 2013 - IMI and the IMI Education & Training projects participated in BIOVISION - the World Life Sciences Forum, which was held in Lyon, France, on March 24-26 2013. It is the place where key stakeholders ###debate the impact of the latest scientific advances on society and share their vision on how to overcome health, environment and nutrition challenges. IMI Executive Director Michel Goldman participated in the plenary session ‘How to make better use of collective intelligence’. Mike Hardman, project coordinator of EMTRAIN, represented IMI and the IMI E&T projects in the BIOVISION Investor Conference workshop. Moreover, the IMI E&T projects organised a satellite event on ‘Training and Education in Europe’ where they presented their activities to the forum’s participants at a booth in the exhibition area.
IMI Education & Training projects in the spotlight at DIA EuroMeeting 2013
March 2013 - This year’s DIA EuroMeeting, which was held in Amsterdam, the Netherlands from 4 to 6 March, featured an entire theme dedicated to IMI’s five Education & Training (E&T) projects. The sessions featured ###the latest news from the projects and demonstrated how they are helping to advance education in the biomedical sector in Europe. DIA EuroMeeting visitors could also catch up with the projects and find out how IMI’s E&T projects can boost their careers.
- View the agenda for the IMI theme in the DIA EuroMeeting programme (page 46)
ParticipantsShow participants on map
- Amgen, Brussels, Belgium
- Asociacion Nacional Empresarial De La Industria Farmaceutica, Madrid, Spain
- Astrazeneca AB, Södertälje, Sweden
- Bayer Pharma AG, Berlin, Germany
- Boehringer Ingelheim Internationalgmbh, Ingelheim, Germany
- Bristol-Myers Squibb Company Corp, Princeton, NJ, United States
- Chiesi Farmaceutici S.A, Parma, Italy
- Eli Lilly And Company LTD, Basingstoke, United Kingdom
- Esteve Pharmaceuticals, SA, Barcelona, Spain
- F. Hoffmann-La Roche AG, Basel, Switzerland
- Glaxosmithkline Research And Development LTD., Brentford, Middlesex, United Kingdom
- Janssen Pharmaceutica Nv, Beerse, Belgium
- Merck Kommanditgesellschaft Auf Aktien, Darmstadt, Germany
- Merck Sharp & Dohme Corp, Whitehouse Station, New Jersey, United States
- Novartis Pharma AG, Basel, Switzerland
- Novo Nordisk A/S, Bagsvaerd, Denmark
- Pfizer Limited, Sandwich, Kent , United Kingdom
- Sanofi-Aventis Groupe, Chilly-Mazarin, France
- The Employers' Union of Innovative Pharmaceutical Companies INFARMA (Związek Pracodawców Innowacyjnych Firm Farmaceutycznych), Warsaw, Poland
- UCB Biopharma, Brussels, Belgium
- Verband Forschender Arzneimittelhersteller Ev, Berlin, Germany
Universities, research organisations, public bodies, non-profit groups
- DIA Europe GmbH, Basel, Switzerland
- European Forum For Good Clinical Practice, Brussels, Belgium
- European Organisation For Research And Treatment Of Cancer Aisbl, Brussels, Belgium
- Hibernia College, Dublin, Ireland
- International Society for Pharmacoeconomics and Outcomes Research Inc, Lawrenceville, New Jersey, United States
- Kobenhavns Universitet, Copenhagen, Denmark
- The University Of Manchester, Manchester, United Kingdom
- European Aids Treatment Group Ev, Duesseldorf, Germany
- European Genetic Alliances' Network, Brussels, Belgium
- European Patients’ Forum (EPF), Brussels, Belgium
- Eurordis - European Organisation For Rare Diseases Association, Paris, France
- Irish Platform For Patients' Organisations Science And Industry Limited By Guarantee, Dublin, Ireland
- Central Manchester University Hospitals Nhs Foundation Trust, Manchester, United Kingdom
- Genetic Alliance Uk LTD, 436 Essex Road, London, United Kingdom
- Vereniging Samenwerkende Ouder- En Patientenorganisaties, Soest, Netherlands
|Name||IHI funding in €|
|DIA Europe GmbH||738 610|
|European Aids Treatment Group Ev||288 670|
|European Forum For Good Clinical Practice||893 637|
|European Organisation For Research And Treatment Of Cancer Aisbl||56 245|
|European Patients’ Forum (EPF)||1 232 402|
|Eurordis - European Organisation For Rare Diseases Association||489 621|
|Hibernia College||384 918|
|Irish Platform For Patients' Organisations Science And Industry Limited By Guarantee||93 276|
|Kobenhavns Universitet||162 028|
|The University Of Manchester||487 592|
|Name||Funding in €|
|Central Manchester University Hospitals Nhs Foundation Trust||121 846|
|Genetic Alliance Uk LTD||121 778|
|Vereniging Samenwerkende Ouder- En Patientenorganisaties||179 377|
|Total Cost||5 250 000|