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ERN-EuroBloodNet SCD Patients Educational Session at 17th Annual Sickle Cell and Thalassaemia Conference (London, October 20th -22nd)

2022-11-27
ERN-EuroBloodNet SCD Patients Educational Session at 17th Annual Sickle Cell and Thalassaemia Conference (London, October 20th -22nd)

Discover the results from Patient Advocacy Training Onsite at ASCAT 2022

This year the ERN-EuroBloodNet thought about a hybrid formula for the ERN-EuroBloodNet SCD Patients Educational Session at the ASCAT 2022: an online Patient Therapeutic Educational Session and an Advocacy training onsite. If you want to know more about it, read here the dedicated article.

For the parallel sessions of the ASCAT 2022 addressed to patients' advocacy, we had the participation of 12 patients representatives coming from different countries: France metropole and Overseas, Italy, Spain, Portugal, Ireland, Sweden, Germany, UK, Australia, Netherlands, Zambia.

The three trainings were about:

  1. Exploring patients-doctors dynamics, and how to build assertiveness. We enacted real life situations with actors and psychologist. The scenario explored was about communicating with non-empathic physicians, asking for painkillers and talking about intimate topics.
  2. Patient Reported Outcomes Measurement. An added value for Research and Advocacy. It was a frontal lesson delivered by Mariangela Pellegrini, ERN-EuroBloodNet Educational & Patient Program manager on what PROMs are and how to use them.
  3. How to disseminate knowledge from ERN-EuroBloodNet at National Level. The experience of a patient advocate, that has spread locally what was learnt by the ERN trainings.

For the next year, it has been proposed to explore again the communication between physicians and patients but invite more physicians to take part in the exercise. In addition, a suggestion raised was a training on transitions for young adult and their families held by adult SCD Patients, and finally a plenary "meet the patients" and "meet the expert"  when physicians can ask questions to patients and viceversa.