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.
ONE MILLION INDIVIDUAL USERS AND COUNTING!
On October 8, the EUPATI Toolbox reached the important milestone of one million individual visitors in just 3 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.
HOW WELL HAVE WE BEEN DOING?
From time to time we look at our performance to understand the impact of EUPATI. This latest survey assessed the change in roles of the EUPATI Fellows who graduated from the EUPATI Expert Training Course. The trends that somewhat fewer patient advocates work as volunteers and more as paid staff, while the number of patient experts advising pharmaceutical companies has more than doubled, speak of professionalisation. The increase in the number of speaking assignments suggests that the Fellows' expertise is increasingly acknowledged. Regulators and payers are also relying on advice from Fellows more than before. The number of inactive patient organisations members has dropped as EUPATI Fellows become more and more integrated into the work of their original organisations. In the survey's narrative part, Fellows reported that “EUPATI is nowadays well recognised as one the best platforms that has stimulated patient involvement across Europe“ and “This program needs to be provided long-term. It is absolutely necessary to make sure that we have knowledgeable patients representatives for all medical conditions.”
Learn more about EUPATI and its work and get in touch with us on email@example.com.
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
Blogging with EUPATI
PARADIGM launched with EUPATI input
The word PARADIGM has taken on a whole new meaning in the EUPATI community! The acronym stands for “Patients Active in Research and Dialogues for an Improved Generation of Medicines”. The aim of the PARADIGM project is to advance meaningful patient engagement in the life cycle of medicines for better health outcomes. The 1st Open Patient Engagement Forum, co-organised by PFMD, EUPATI and PARADIGM was held in Brussels on 10th April. The forum, held a month after the launch of PARADIGM, was a launchpad to gain early insights and inputs on the project workplan and to start discussions on specific tasks via thematic workshops. Eighty-four delegates attended the forum, among them four EUPATI Fellows: Dominique Hamerlijnck, Begonya Nafria, Victoria Fonsou and Joan Jordan. Here is what each of us experienced and took away from the event.
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.