COST Action GliMR releases video to underline the crucial importance of sharing medical data

05/11/2021

The COST Action ‘Glioma MR Imaging 2.0’ released an animation video to explain patients about the importance of medical information for scientific research and how their privacy is protected. This video highlights that via their medical information, they can contribute to the discovery of new treatments and help future patients.

The ‘Glioma MR Imaging 2.0’ network, GliMR (www.glimr.eu) in short, is a European network funded by the European Union gathering more than 180 researchers and clinicians from 27 countries. Since its launch, in 2019, this collaborative network of scientists and experts attempt to streamline and improve the diagnosis, prognosis, follow-up, and evaluation of treatment of brain tumours using advanced MRI techniques. In order to reach such goals, the use of medical patient data is crucial.

To contribute to the 15th International Brain Tumour Awareness Week, the network has developed and released an animation video to explain that medical data, such as test results and scans, can be reused for scientific purposes. When medical data is used, patient privacy

is always protected following GDPR and national guidelines. The video explains that medical data can lead to new cures and treatments, and by sharing medical data, each patient can make a difference. This video has been developed in 17 languages by WellPlayedVideo and in collaboration with GPDR specialists and the International Brain Tumour Alliance. It will be distributed throughout Europe, to be shown on websites and onscreen in waiting rooms of hospitals and medical centers.

Additionally, the COST Action wants to highlight the urgent need for uniform and clear guidelines when considering the use and sharing of medical data for research purposes. Currently, many different national and local implementations of GDPR complicate research and collaboration. Therefore, GliMR is organising a webinar on privacy regulations of medical data in research. The network invites all clinicians, researchers, health care personnel and patient representatives to join this virtual event. More information and registration can be found on https://glimr.eu/post/gdpr-webinar/.

Additional information