Tribute to Fabrizia Stavru
It was with great sadness that we learned of the death of Fabrizia Stavru 23rd May 2021.
Fabrizia accompanied us as a patient representative within the SIRIC health democracy group since 2017. Researcher at the Pasteur Institute, she was convinced of the importance of patients taking part in research and also participated in the "Patients and researchers: towards a new dialogue" projet (find out more).
From the first exchanges with the group, Fabrizia never stopped alerting us to the importance of being able to create a space for discussion with the patient community in order to benefit from representative opinions and better orientate research depending on patient needs.
Over the four years spent with Fabrizia, we discovered a brilliant, committed and assertive young woman who will be remembered as a model of committment and altruism as well as an example to follow to find the energy to move mountains. Right until the end, Fabrizia put all of her energy into her fight against the disease with a pugnacious determination to advance research, whatever the cost, for the good of all.
Pointing out inconsistencies between ethics, laws and practice, Fabrizia alerted us to the question of data portability. Personal data entrusted to a hospital or a research team that she wanted to see shared with other teams for the common good. She had the courage to make her experience a case study presented at an NCI symposium in September 2019 (find out more).
This action initiated an important reflection within the SIRIC health democracy group on data portability and the implication of patients in the use of their health data. The first outcome of this reflection is the organization of a webinar series whose objective is to inform the general public on health data and create a discussion space to better identify patient expectations in line with Fabrizia's commitments.