VIDEO - Reuse of medical data: how patients can contribute in research

Reusing medical data for scientific purposes: what about patient privacy?

Scientific research plays an important role in the understanding of diseases and the discovery of new treatments. However, medical data is needed to progress our knowledge. Many types of medical data, for example MRI-scans, test results, and blood values, are collected on a daily basis in healthycare institutions around the globe. Analysing and sharing this information with researchers and healthcare professionals in other institutions and countries may lead to breakthroughs, which will improve the quality of life of current and future patients.

In 2016, the General Data Protection Regulation (GDPR) came into effect, assuring data privacy and enhancing the control and rights of individuals over their personal information, including medical data. One of the seven principles of GDPR is transparency, providing patients the right to information (Article 12). Each patient should be informed in a consice, transparant, and intelligible way, using clear and plain language. The information should be easily accessible, in written or other means, and where appropriate, by visual or electronic means.

Inform your patients, use our video!

To comply with this transparency principle, GliMR has developed an animation video to inform patients that:

  1. Reusing and sharing medical data for scientific purposes can happen.
  2. When data is reused for scientific research, several safeguards are in place to keep the patients’ privacy protected at all times.
  3. Medical data is needed: by using their medical data, each patient can make a difference.

The video has been produced by a team of scientists, creative artists, GDPR specialists and patient representatives, with special attention to conciseness, clarity, and intellibility.

How use this video?                                                                                                                                                   Creative Commons-Licentie

This animation video can be used for free by all types of healthcare professionals and institutions, as well as patient organizations and other relevant stakeholders, who want to inform their patients about the reuse and sharing of medical data. The video may serve as a first tool in a stepwise approach to comply to the transparency principle within the institution’s data protection strategy. Patients can be reach by broadcasting the video in the waiting roomembedding it on a website, or sharing it on social media.  

The video is available in 17 languages, both with and without subtitles:                                                                                                     

  • English (video / subtitled)
  • Bulgarian (webpage / video / subtitled)
  • Croatian (webpage / video / subtitled)
  • Czech (webpage / video / subtitled)
  • Danish (webpage / video / subtitled)
  • Dutch (webpage / video / subtitled)
  • Estonian (webpage / video / subtitled)
  • French (webpage / video / subtitled)
  • German (webpage / video / subtitled)
  • Greek (webpage / video / subtitled)
  • Italian (webpage / video / subtitled)
  • Norwegian (webpage / video / subtitled)
  • Polish (webpage / video / subtitled)
  • Portuguese (webpage / video / subtitled)
  • Romanian (webpage / video / subtitled)
  • Slovak (webpage / video / subtitled)
  • Spanish (webpage / video / subtitled) 

Disclaimer

This video only serves as a tool to inform patients in a transparant, intelligible manner on the reuse of medical data and the safeguards in place to protect their privacy. This video can be part of the data protection strategy, but should not be used solely. Each healthcare professional or institution is responsible for the correct implementation of GDPR when reusing or sharing medical data for scientific purposes. Under no circumstances shall GliMR or its partners be liable for GDPR violations of professionals or institutions using this video.

Production

Project manager
Production
GliMR-team
Legal advisors

Patient representatives

Patricia Clement (Ghent University, BE)
Well Played, smart video company (Ghent, BE – website)
Dr. Jan Petr & Dr. Esther Warnert and many more
Nils Broeckx (Ask Q, University of Azntwerp, BE)
Katya Van Driessche (DPO Ghent University Hospital, Ghent, BE)
The International Brain Tumour Alliance (The IBTA, UK – website)