GDPR compliant reuse of medical data : encouraging patients to contribute to research (video)

Data acquired for clinical purposes are often unreachable for scientific research. The General Data Protection Regulation
(GDPR) in the EU introduced new safeguards to ensure patient privacy, including the transparency principle that states that
information about data protection should be easily accessible in a concise and clear way, using plain language.1,2,3 Patients
are often unaware that they can become active participants in the scientific process by allowing the reuse of their medical
data and that privacy protection rules guarantee safe data-sharing.
Having these challenges in mind, the European Cooperation in Science and Technology (COST) Action ‘Glioma MR Imaging
2.0’ (GliMR; glimr.eu) has developed an animation video that can be used to inform patients. GliMR is a network of clinicians,
researchers and other stakeholders, that attempts to streamline and improve the diagnosis, prognosis, follow-up, and
evaluation of treatment of brain tumours using advanced MRI techniques.4 Previously, a joint-initiative from GliMR and the
Open Brain Consent resulted in the development of a GDPR-compliant template consent form and associated data user
agreement.5 These templates are valuable tools to inform patients and healthy volunteers about data usage and sharing
related privacy regulations, and facilitate the collection of consent. Unfortunately, patients are only exposed to this
information when recruited specifically for scientific studies.
Therefore, GliMR released an animation video as a tool for communication towards patients, which can be used as part of
the data protection strategy within hospitals and healthcare institutions across Europe.