SECONDARY USE OF PERSONAL DATA FOR (BIOMEDICAL) RESEARCH
summary
GDPR leaves researchers facing national variation that fragments practice; desk and survey work covers 25 of 27 member states plus the UK, finds ethics committees often push consent and sponsors struggle to choose legal bases. A public–private project assembles a multinational data lake with 23,000+ patients and ~45,000 datasets using layered de facto anonymization (suppression, perturbation, strict access controls) and works, but interoperability needs codes of conduct and alignment with the European Health Data Space proposal.
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chapters (11)
- 0:00Start
- 5:20The European Data Protection Supervisor
- 6:30The European Data Protection Board
- 7:13Data protection and scientific research
- 11:43Secondary use of health data- EDPB
- 42:42Secondary Use of Personal Data for Biomedical Research
- 44:56European Health Data Space Regulation
- 47:18Okay - so you have this pile of data, what now?
- 47:48Considerations for Working With Health Data in the EU
- 49:04One Trust Solutions for Working With Health Data in the EU
- 51:58Takeaways
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