The very first virtual ELPA Educational training started on 17th June 2020 with the greetings by ELPA President, Marko Korenjak.
After a short tour of presentation by all the attendees the floor has been taken by Dr. Teresa Casanovas Taltavull. She broke the ice presenting about the impact of liver disease on Health Related Quality of Life (HRQL). Her presentation was an amazing example of translating complex medical contents into something very useful for the entire liver patients’ communities.
A quick Q&A session led the participants to the coffee break followed by the second presentation. Mrs. Nadine Aknin from Syrtex, together with her colleague Mrs. Claudia Pyfer, gave an overview on the selective Internal Radiation Therapy in liver tumours. A presentation full of details but easy to understand for the general public and a short but comprehensive video pushed the attendees to ask many questions.
The first day of the ELPA educational training was wrapped up by Dr. Teresa Casanovas Taltavull’s presentation about the COVID-19 and its effects on the management of liver patients. Thanks to the fact that this is a hot topic, many participants asked question to Dr. Casanovas Taltavull regarding mainly to her point of view about the evolution of the pandemic and the situation related to hospitals and health care.
Before the end of the meeting ELPA President, Marko Korenjak reminded everybody the topics of the second day of ELPA Educational training webinar.
The second day of the virtual ELPA Educational training was held on June 24, 2020. After a short introduction by ELPA President Marko Korenjak, Dr. Teresa Casanovas Taltavull took the floor.
During her presentation all the attendees had the possibility to listen to a detailed overview about optimising outcomes in patients with Hepatic Encephalopathy (HE), a complication of cirrhosis. A very hot topic as HE is a reversible syndrome of impaired brain function occurring in patients with advanced liver diseases. As usual, Dr. Casanovas Taltavull was able to explain extremely complex medical issues in a very clear and useful way for all the participants belonging to the liver patients’ communities.
A quick Q&A session led the participants to the coffee break followed by a workshop on HCC by Achim Kautz. His presentation was composed by two parts. The first one was focused on HCC medical aspects and the second one on HCC policy aspects.
An animated debate followed, especially because Mr. Kautz gave to the audience many stimulating insights and many inputs. One of the most interesting characteristic of this session was the involvement of the attendees who were able to discuss the situation in their own countries making examples, sharing good practices and complaining about the lack of services or their quality. Before the end of the session ELPA Scientific Committee leader, Dr. Teresa Casanovas Taltavull stressed out that, although the importance of patients being able to get as much information as possible about HCC on their own, among the EU countries there are still many differences in terms of health systems, resources, languages. For this reason, the role of patient’s associations is vital. They can improve both the national and the EU level with their constant advocacy work and they are the place where patients can make their voices heard.
On 1st July, 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 Mr. 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 thought, 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.
The last day of the virtual ELPA Educational training on 8th July, 2020 was extremely dense with information, debates and exchanges among ELPA members, attendees and a remarkable variety of panellists.
After an introduction by ELPA President Marko Korenjak, the floor was taken by the first company, Novartis. Mrs. Monia Steenackers, Global IHD Patient Advocacy Head and Mr. Nico Jansses, Global Medical Director presented about the Novartis Commitment to hepatology. After a first more general part, they focus more on clinical trials and that trigged many questions by attendees.
Before the coffee break the President, wrapping up the session, also added some comments stressing the important collaboration between pharma companies and patients’ associations.
After the coffee break a special session started. ‘Medical research project and patients’ Perspective & discussion’ was a workshop part of EU medical research project MICROB-PREDICT, where ELPA’s main objective is dissemination of the project’s information and results. Prof. Dr. Minneke Coenraad, gastroenterologist-hepatologist Leiden University Medical Center, The Netherlands, dissemination manager MICROB-PREDICT Prof. Dr. Jonel Trebicka, professor of Hepatology Goethe University Frankfurt, Germany, principal investigator MICROB-PREDICT, EF Clif, Barcelona, Spain, Prof. Dr. Aleksander Krag, Head of Hepatology Department Odense University Hospital, head of the clinical trial MICROB-PREDICT and Marko Korenjak, ELPA President – on behalf of the MICROB-PREDICT consortium – talked mainly how patients are involved and can benefit from this project.
Specifically, after an introduction by Marko Korenjak about a short case presentation of decompensated cirrhosis / acute-on-chronic liver failure (ACLF) from a patient perspective, it was the turn of Prof. Dr. Jonel Trebicka. He gave the audience an overview of the project. Then, Prof. Dr. Aleksander Krag described in detail ALB-TRIAL, the clinical trial that is part of the project. The fourth presentation was given by Prof. Dr. Minneke Coenraad on Dissemination, training, communication and why it is important to deliver the results of the project to the patients, the scientific community and also to the general public.
A presentation by Dr. Teresa Casanovas Taltavull followed a short Q&A session. She shared some updating information for liver patients about the Hepatocellular Carcinoma (HCC). Her detailed presentation focus on a multidisciplinary approach the liver patients can benefit from. As always, Dr. Casanovas Taltavull gave to the audience new interesting information, stressing the importance of patients associations.
After the lunch break the second company of the day took the floor. From Bayer Medical affair Oncology, Mrs. Pooja Merchant and Mr. Kirhan Ozgurdal presented about how Bayer engage with patients and gave an overview of liver cancer treatment. Questions from attendees mainly regarded late diagnosis complications, updates on therapies, dissemination of new information to raise more awareness, especially at high level, about liver cancer, and involvement of representatives at national level.
Just before the end of the meeting ELPA President, Marko Korenjak thanked everybody for its participation in ELPA Educational training webinar.
This event has been supported by a grant from companies: Gilead, Allergan, AbbVie, Novartis, Roche, Bayer, Sirtex, Ipsen, Norgine, Sequana Medical.