The A to Z of medicines
ALL PATIENT INVOLVEMENT GUIDANCE DOCUMENTS AS PEER-REVIEWED ARTICLES
The EUPATI guidance documents are the "crown jewels" in the collection of publications and tools that have come forth from the 6 years of the project.
Now these have all been published as peer-reviewed articles in Frontiers in Medicine to allow even better scientific framing of patient involvement in different stages of medicine development and clinical trials.
EUPATI is not only concerned with the practical training of patient experts and the dissemination of unbiased, objective information about the systems and processes of research and development. Our collaborators also try to understand, map out and describe the theoretical processes and possibilities for meaningful involvement. In the future, EUPATI will also engage in teaching patient experts and the interested public how and why "patient engagement" makes sense, and how lay people can read and understand science more.
Introducing the new EUPATI Coordinator
The European Patients’ Academy on Therapeutic Innovation (EUPATI) is delighted to introduce our new Coordinator, Maria Dutarte.
Maria Dutarte has most recently worked as a Project Manager at the European AIDS Treatment Group (EATG) coordinating community involvement in a number of training initiatives and scientific projects. Previously she has worked in project management & communications for different organisations in the fields of international health & research (e.g. International AIDS Society, the Global Fund, Centre National de la Recherche Scientifique and International Foundation for Science). As a representative of the EATG, she has been involved in EUPATI since December 2016 and in EFOEUPATI since September 2018. She has been playing a key role in EFOEUPATI WP2 sustainability planning and working group. Maria is originally from Finland but is currently based in Brussels and Strasbourg.
“I’m very excited and happy to have been given this new opportunity. I am aware of the important challenges ahead as EUPATI is going through a transition to become its own legal entity. The workplan for this year is very ambitious. However, I am confident that with the collaborative efforts of our committed EUPATI Consortium Partners, experienced Co-Chairs, and a very capable and dedicated Secretariat Team Members, we will be successful. I look forward to working with you all.”
EUPATI and EPF have the fullest confidence that Maria will use his many years of non-profit experience and knowledge in leadership, to navigate EUPATI in the next level of development with the EUPATI Foundation and enhance the mission in the years to come.
Maria will be starting her term as Coordinator of EUPATI on 3rd March 2020. She will be based in Brussels and Strasbourg. You will be able to reach her on email@example.com
Matthew May has stepped down as Coordinator after 8 years working within EUPATI and will embark in a new professional journey. To acknowledge the valuable contribution of Matthew, the co-chairs of EUPATI, Nicola Bedlington and Matthias Gottwald said:
“Having worked for EUPATI since 2012 in several roles, Matthew May has decided to move to pastures new, from March 2020, with a job in industry in patient involvement in early research. Whilst wishing him all the best for his new career, we would like to take this opportunity to thank him for all the work he has done for EUPATI. Our patient training programme would not be where it is today without him. After having led content development in the IMI project from 2012-2017 he took over the role as EUPATI coordinator for the whole programme. During the last three years he was the key driver behind the optimization of the patient expert course with now 150 alumni “fellows” and 50 current students, the continuous development of the toolbox , the EUPATI web platform with 3 million users worldwide, and the work on a long-term sustainability solution. He coordinated a successful application for funding from IMI and EIT Health for improvements of the programme and was always the anchor point for all consortium members in challenging times, ensuring that the interest of all stakeholders in our public-private-partnership were met.
We cannot thank him enough for his contribution to the success of EUPATI. As chairs of the Steering Group we have enjoyed very much working with him as a reliable, professional, constructive and diplomatic leader and team member.”
The Patients' Academy has launched their revolutionary training course for academia and industry professionals! The third EUPATI Fundamentals will take place on May 28 2020 in Brussels. This 1 day course leads participants through the principles of good patient engagement and uses problem-based learning to help them plan a model project including the right patients at the right time for the right purpose.
The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a multi-stakeholder programme led and hosted by the European Patients’ Forum (EPF) originally established by the IMI-EUPATI project (2012-2017). It is a successful programme that provides education and training to increase the capacity and capability of patients to understand and contribute to medicines research and development (R&D), and to improve the availability of medical information for the health interested public. It does so by conducting its established Patient Expert Training Course which has trained more than 150 patient experts to date and by providing an open-access multilingual toolbox that has served more than 1.9 million users around the world to date.
Donate to EUPATI! Please join the EUPATI crowdfunding campaign and support our Patient Expert Course. Your donation will be used to cover the costs of the face-to-face training involved in our patient training. Every 800 EUR donated covers the cost for one seat. Thank you for your contribution!
We continue to see an unparalleled interest in the course. And that is good!
We expect the launch of additional courses and opportunities for patient experts. Once more, every 800 euros donated will help us add another slot on the expert training course. The more places we can offer, the higher the chances!
We provide you with the latest in news from the world of health, medicine research and development, and clinical trials. Our health news bulletin comes every 10-14 days and sums up what we find interesting and relevant for patient advocacy and education.
MORE THAN THREE MILLION INDIVIDUAL USERS AND COUNTING!
On 15 March, 2020, the EUPATI Toolbox stands at more than three million individual visitors in just 4 years.
We don't stop here. There are additional developments, a redesigned website and portal and an even more user friendly EUPATI Toolbox are underway.
WATCH YOUR WAY TO KNOWLEDGE
EUPATI has developed a massive video library over the last years. Webinars, interviews, portraits, guidance - you can find a wide variety of materials that facilitate your work in patient education and advocacy. Increasingly, we also feature webinars in other languages than English, and we happily partner up with patient organisations to develop co-branded webinars. These are based on EUPATI knowledge and contents, or include EUPATI speakers, but they focus on the issues and questions of a particular patient community.
If you are interested in our webinar and video content development activity, contact us on firstname.lastname@example.org.
Keep in touch and we'll send you updates by email
EUPATI in your country
EUPATI is a network of European National Platforms.
Click on your country to find out more and to learn how you can get involved.
Mini-course on Community Advisory Boards
Community Advisory Boards (CABs) are one of the proven and effective models of involvement and working together in medicine development. Established, operated and controlled by the patient community, CABs provide a neutral, scientifically grounded space for researchers, regulators, patients and the industry to discuss current issues and to jointly influence the processes.
Click here for the mini-course / starter kit on Community Advisory Boards.
All webinars all at once!
Easy to follow with thorough documentation: EUPATI webinars
The Alumni Network
A cohort of 100 patient experts with unparalleled experience
EUPATI graduates and patient experts have received deep and scientifically sound training in medicines development and clinical trials. They are also seasoned speakers and, many of them, trainers with first-hand experience in their respective therapeutic areas. Contact our Alumni Network if you want authentic and unbiased advice for your work or events.
GDPR compliance at EUPATI
EUPATI is also compliant with the General Data Protection Regulation of the European Union.
If you are a subscriber to any of the EUPATI newsletters or other mailing lists, you have received a consent form that asks you to reconfirm that you wish to remain on our lists and want to receive more information about the developing and dynamic world of patient education and capacity development. Please follow us here or on Twitter (@eupatients) for more announcements.
You can also always opt into receiving EUPATI mailings about important news, announcements and invitations from the field of patient education, empowerment and capacity building by
Guidance documents on patient involvement in R&D
The European Patients’ Academy (EUPATI) guidance documents aim to support the integration of patient involvement across the entire process of medicines research and development with regulatory agencies, health technology assessment (HTA) bodies, ethics committees and the pharmaceutical industry.
Guidance for patient involvement in industry-led medicines R&D
This guidance document aims to support the integration of patient involvement in industry-led medicines R&D.
Guidance for patient involvement in regulatory processes
This guidance document aims to support the integration of patient involvement in regulatory processes.
Guidance for patient involvement in HTA
This guidance document aims to support the integration of patient involvement in HTA.
Guidance for patient involvement in ethical review of clinical trials
This guidance document aims to support the integration of patient involvement in the ethical review of clinical trials.
Mini-course starter kit – Protocol design
This EUPATI Mini-course starter kit is designed for patient involvement in protocol design.EUPATI Mini-course starter kits have been derived from content found in the EUPATI toolbox and EUPATI Patient Expert Training Course. The starter kits are thought to address roles that patients play in medicines development for example those shown in the figure showing the roadmap of patient involvement in medicine development.
Steps of HTA processes and their necessary considerations
This fact sheet contains a list of the steps in the HTA process together with questions that should be considered during each of them.
Compensation in Clinical Trials
A presentation describing the compensation in clinical trials, which can be adapted for own use.
Patients Involved – Collaboration in an oncology trial
A French patient association (La Ligue contre le cancer – http://www.ligue-cancer.net/ ), developed a collaboration in oncology with....
All Aboard to a Better Health Future
This conference was held on the 14th of December 2016.
How did you adapt the Toolbox?
The EUPATI Toolbox is a fantastic new resource containing over 3000 pieces of content to help you learn more about the medicines research and development (R&D) process. Since its release in January 2016, tens of thousands of visitors from across Europe have been discovering, adapting and sharing tools to educate themselves and their patient communities. There are many different ways to use the EUPATI Toolbox, and we want to capture how different people in different countries are getting on.