From 8th to 11th June, ALAN attended the European Hematology Association (EHA) 2023 congress, held in Frankfurt, Germany. Below is a summary of the activities in which ALAN took part, in addition to meeting with our members, sponsors and with the medical community.
We are also reporting on the key sessions and latest advances. Check here
ALAN Members and Supporters meeting
On Wednesday 7th and Friday 9th June, our Chair, Zack Pemberton-Whiteley and Samantha Nier, Network Director, updated ALAN members and sponsors present in the room and online, with the 2023 plans. The meeting was very well attended, based on a good exchange and we are very happy with what we have been able to accomplish so far and are looking forward to achieving more during the rest of the year.
Slides presented –> ALAN_EHA 2023_meeting
ALAN Poster Presentation
On Friday 9th June, we presented our poster “Living with acute leukemia – A global survey of patients and carers experience”, based on the data from the global survey on leukemia patients and carers experiences we ran in 2021.
EHA Patient Joint Symposium
Note: report on the sessions can be found here.
Jan Geisseler, Steering committee member, chairing the Patient Joint Symposium: Session I: Novel clinical trials in hematology – The comparator challenge and the need for new formats and heading up the Panel discussion: Designing novel clinical trials that meet patients’ unmet needs – patients’ perspective.
“Survivorship is not just survival. Patient preferences are key to understand what patients want and how they survive” – Jan Geissler, EHA Patient Joint Symposium, EHA2023
Zack Pemberton-Whiteley, chair of ALAN, chairing the EHA-Patient Joint Symposium session II: From approval to access – integrating patient preferences into clinical, HTA and payer decisions and leading the Panel discussion with Patient-generated evidence in access.
“We should move from reported to relevant in patient reported outcomes as many PROs are outdated & not specific to #eukemia. We end up not measuring what matters to patients. Patient involvement in qualityoflife data collection is key” – Zack Pemberton Whiteley, EHA Patient Joint Symposium, EHA2023
EHA Patient Advocacy Committee
All of the patient advocacy committee (PAC) members represent a different area of hematology and met during EHA2023 to discuss involvement of the PAC in EHA activities. Great to be joined by the President, Past President and President Elect.
EHA Community leadership event
Anne-Pierre Pickaert, Steering Committee member, was involved in the leadership dinner during EHA2023 and in a panel discussion on HTA and access.
Quoted Harvard med school Dr Slack “Patients are the largest and least used resources in healthcare”. Patient involvement is efficient, relevant & time- and money-saver! – Anne-Pierre Pickaert
Samantha Nier, Network Director was invited to speak during the investigator meeting about patient involvement and patient reported outcomes in ALIDHE Phase III study.
CLL Patient Advocacy Exchange
Zack Pemberton-Whiteley was invited to speak at the Patient Advocacy Exchange on the immune challenges for people living with CLL and the campaign that Leukaemia Care (UK) ran on Watch and Wait (active monitoring).
We are looking forward to ASH in December and EHA 2024 in Madrid next June for more and to see you all again !