EUPATI has established itself as a solid and reliable source of information for patient experts and lay persons interested to learn more about the medicine research and development, and clinical trials. Thousands of pages of information, a huge library of webinars, mini-courses or starter kits, scientific publications round out the systematic collection of knowledge that…Read more
ISPOR 2017- Report from EUPATI Fellows During the EUPATI course, we learned about the core principles of HTA- the what and the why of pharmacoeconomics. At the ISPOR 20th Annual European Congress, we got the chance to find out more about the who, the when, the how and the where. ISPOR stands for the International…Read more
This article by EUPATI fellow and lung health advocate Dominique Hamerlijnck discusses the significance of patient involvement in clinical research and development from the patients’ perspective, and how emerging patient movements focussing on education and the sharing of knowledge can contribute to the quality, speed and acceptability of biomedical research. “Currently, the level of…Read more
EUPATI as we move forward – the view of the EPF President EUPATI as an EPF programme is approaching the end of its first year, and as we begin to evaluate the achievements – and challenges – of this new environment, it is timely to share my perspective on where we have come from- and…Read more
I participated in the second annual forum of the Scientific Panel for Health organised by the Directorate General for Research and Innovation of the European Union in Brussels on 9 June 2017. Held before a packed room of health research experts from around the EU, the title of the conference was “Health research in a…Read more
Following a long and intense application period, the selection committee for the EUPATI Patient Expert Training Course participants met on 9th May 2017 to decide who of the almost 170 applicants can participate in the course, which will start then in September 2017. Once again, the list of applicants was very impressive, which created an…Read more
Health Technology Assessment is gaining importance in regulatory decisions about the registration and reimbursement of health technologies in a growing number of European states. It is essential to involve patients in this process, and not only because the law requires such involvement in many countries, but also because evidence shows that patients who are informed…Read more
The key assets of EUPATI – the website, the Toolbox, and the Expert Training Course – will be maintained and developed, continuing to educate and empower patients for a more active role as partner in all aspects of medicines research and development.
While this new benefit-risk guideline opens a door to partner with patients for conducting preference studies and to structure patient-focused benefit-risk assessment, we cannot forget that there is a lack of obligation to put these guidelines into effect, and how exactly patient communities and their representatives can get involved in this?
The gap in research related to drug use during pregnancy means that doctors and patients may not have all the facts. Progress in this field is only possible if all stakeholders contribute – starting with all of us, along with the EUPATI Toolkit and website.