Overview
- On Tuesday researchers and media reported that the patient-support foundation that held thousands of dossiers is being wound down and has told patients their records will be destroyed at the end of the week.
- The foundation says privacy rules prevent sharing the collected files, which is why it plans to ‘carefully’ destroy the records rather than transfer them to other organizations.
- Researchers including Jos Bosch of LUMC have spent about two months asking for a pause and for ways to preserve the data but have not secured an agreed suspension of destruction.
- The Dutch data protection authority (Autoriteit Persoonsgegevens) asked on Tuesday that destruction be delayed and offered to meet with the foundation and the Ministry of Health to seek a careful solution.
- Files include longitudinal medical files, patient questionnaires and research surveys gathered since the Q‑fever outbreak and the 2020 coronavirus pandemic, and patients have been given the option to download their own data before the scheduled destruction.