On July 1, 2020 ELPA organized its third day of Educational training exceptionally in a virtual form. All the ELPA members’ representatives attending the meeting had a short conversation together about the role of patients’ organizations and they exchanged updates about ELPA’s activities.
After an introduction by ELPA President Marko Korenjak, Julio Burman took the floor and broke the ice with a first, important question: why should I participate in a clinical trial?
Indeed, during his presentation all the attendees had the possibility to listen to a detailed overview about patients’ involvement in clinical trial, risks and benefits, the importance of that and many details about how to help patients to understand clinical trials. He especially focused on the Informed Consent Form as a process and not only as a document and on the importance to give patients more knowledge as possible.
After his brilliant lecture, attendees asked many questions and a lively debate started. Before the coffee break the President, wrapping up the session, also added some comments stressing the fact that the main role of patients associations in this field is information and education. They have to be able to answer all the questions coming from patients. This is the reason why they have to put more effort regarding patients’ participation in clinical trials. Everybody agreed on organising more trainings about this topic.
A workshop on NASH by Achim Kautz followed the coffee break. As it happened last week after his presentation on HCC, an animated debate followed, especially because Mr. Kautz gave to the audience many stimulating insights and a lot of food for tought, stressing the important and delicate role of patients associations that are in between patients and doctors.
One of the most interesting characteristic of this session was the involvement of the attendees who were able to discuss this topic from their points of view.
Before the end of the meeting ELPA President, Marko Korenjak reminded everybody the topics of the next Wednesday’s ELPA Educational training webinar. Inviting the audience to join on July 8, for another exciting ELPA training day.