SCD Patients’ Educational Session at ASCAT 2022 January
The third edition of SCD Patients Therapeutic Educational Session at International Congress has just finished.
The SCD Sickle Cell Disease Patients Educational Sessions at the Annual Scientific Conference on Sickle Cell and Thalassaemia (ASCAT) is joint project of the ERN-EuroBloodNet together with ASCAT members aiming to:
- Creating a group of people living with Sickle Cell Disease (European and International) to let them express their needs and share experience and best practices
- Train patients to Patient Therapeutic Education and Public Patient Involvement in Research
- To evaluate in Europe the impacts of Patient Therapeutic Educational sessions on patients and their families
- To create further connections among health professionals and patients
- Making visible to the scientific community patients' needs and expectations
Also for this third edition, the collaboration with ASCAT and the ERN-EuroBloodNet was confirmed. The conference was held on January 2022 from 26th to 28th and it was under online format.
It is important to keep the representation of patients during this International Conference because this is one of the must attend events of the year for consultants and specialist psychologists, nurses, scientists and all relevant experts for Rare Anemias, so it is crucial that this event have patients representation at its core. Patients and parents patients invited to the Educational session have also the opportunity to participate in the full ASCAT Congress and learn about the latest advances in diagnosis, treatment and emerging fields in haemoglobinopathies, and build a solid dialogue among patients and health professionals.
A team of SCD experts belonging to ERN-EuroBloodNet and ASCAT committee led the educational session. Prof. Beatrice Gulbis, from Hôpital Erasme/LHUB-ULB in Belgium; Prof Mariane de Montalembert, from AP-HP hôpital Necker, in France; Dr. Noemy Roy from Oxford University Hospitals NHS Foundation Trust, Dr Baba Inusa from Guy's and St Thomas' NHS Foundation Trust, Dr Raffaella Colombatti, from AO Padua in Italy and finally CHAKRAVORTY, Subarna, from King's College Hospital NHS Foundation Trust.
Topics were pre-identified by participants of the previous edition: Racism, Mental Health, Pregnancy and Bone Marrow Transplant, so it has been decided to have two interactive webinars and two interactive panels on those topics. Also for this edition, and in line with the general objectives of the project, participants of the sessions presented the outcomes at the closing plenary session of the ASCAT 2022.
54 people registered for the only event: 34 people living with SCD and 20 health professionals or other roles, mostly from European Country, and an average of 50 extra people connected to the patients' session through the general ASCAT 2022 congress platform.
Involving SCD patients in research and care is difficult and not often done. This disenfranchised group is typically challenging to engage. With our model of Educational training, we show to patients' community and scientific community that it is possible and meaningful, it makes a difference to the patient group and it strengthens the relationships among physicians and patients. Finally, it has been highly appreciated by the scientific and patients community to hear patients perspectives during international scientific conferences.