From 9th to 17st June, the Acute Leukemia Advocates Network (ALAN) attended the 27th European Hematology Association (EHA) congress, held for the hybrid, with a F2F part from 9th to 12th June and a virtual part from 15th to 17th June. We had the chance to be in Vienna for the F2F component as well as attending online when we came back.
ALAN Members and Supporters meeting
On Friday 10th June, our Chair, Zack Pemberton-Whiteley and Samantha Nier, Network Manager, updated ALAN members and sponsors present in the room and online, with the 2022 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 2022_meeting
EHA Patient Advocacy Hub
We also had the chance to be well represented and have a booth in the congress center. It was a great opportunity to meet with all our colleagues and especially from CML Advocates Network, CLL Advocates Network and MPN Advocates Network as we are collaborating with them on various projects.
EHA Patient Advisory Committee
EHA was also the opportunity for the EHA Patient Advisory Committee to have its inaugural meeting which is a great step forward to a closer collaboration between hematologists and the patient community. Our Chair, Zack Pemberton-Whiteley has been appointed as vice-chair of the committee.
We could also attend the 4 patient advocacy sessions proposed during the whole congress. We had the honor to be joined by EHA current president Elizabeth Macyntire and past president John Gribben, despite their busy schedules, both recognizing the importance of patient advocacy and the work we do.
Key discussions points and messages from the sessions
- From drug-centric to patient-centric: Clinical trials
- Patient perspective:
- What do patients want ?
- Clinical survival
- Patient meaningul outcomes
- Patient experience
- Set up trials patients want to participate in.
- How to involve patients ? Think in different ways. ‘one patient’ can share their experience. But does it match their disease norm. Give some thought to the right kind of people to engage. Ask patients organisations to advise on who to include.
- We want to see changes because of the input we’re giving you. Not just tokenism because a funder says you need patients advocates to be involved. Listen to what we have to say. Involve us early.
- Need for systematic involvement as the norm. Not just for one trial. And really listening and acting on what patients are saying.
- What do patients want ?
- EU-PEARL is a strategic partnership between the public and private sectors to shape the future of clinical trials. More info: www.eu-pearl.eu
- Patients have a major role in collection of quality of life data
- Until recently, there was no standardized protocol and quality of life tool and there is great need for standardization.
- Quality of Life should be more included as primary endpoint in clinical trials.
- Need to improve patient relation with doctors.
- Doctors need communication training.
- Need of informed patients and physicians. Various ways of training: interviews, PREMS, PROs, survey measures, focus groups, etc.
- Need for additional studies showing quality of life in patient centric trials vs. non centric trials.
- “Each one of us is a potential patient. Each one of us is a citizen and can take responsibility”.
- Patient perspective:
- From drug-centric to patient-centric: Early benefit assessment of novel therapies
- Countries need to be more prepared
- Need for affordability and innovation.
- Inequalities, also in EU
- Why is cure needed ?
- How to provide patients access to innovation ?
- Hematology in the Beating Cancer Plan
- What is the EU mission on cancer
- Important implementation is at both national, regional and local level
- How patient organisations can be more involved in shaping EU projects to make sure voice of patients is heard ? “There isn’t a single point of contact to inform how patient input should be collected in future joint HTA assessments. Joint Patient Advocacy both at national HTAbodies and EU levels, including European Medicines Agency, European Commission and EuNetHTA, are needed”
- Inequities in access to hematology care in Europe: Lessons from Ukraine
- Important to keep in mind that “it is not simply cancer”. Psychological distress comes on top of cancer.
- Rapid adaptation on how to deliver care, and move patients to other countries to make sure they get treatment. However, it was difficult for countries to treat ukrainian patients due to lack of complete medical history, language, treatment plans different from Ukraine, etc.
- Issues with drug supply, shortage of hospital beds and staff
- Lack of formal network
- Lessons learnt:
- Inequalities in treatments and in access to treatments.
- Institutions don’t have the capacity to deal with a pandemic and a war
- Need of planning for recovery ” we have the opportunity to replan with a realistic budget”. As we heard: “if you want peace, you need to prepare for war”.