A learning health care system secondary use of health data in research (2)
summary
A Netherlands survey of 1500 surveyed, 731 responses finds high trust in clinicians (~90%) and researchers (~75%) and reports 60% accept no-consent scientific use of deidentified medical records while ~25% would opt out and ~75% say they don’t need to decide if data are well protected. Proposals include patient-controlled archives and data cooperatives for citizen ownership and benefit; legal specifics debated: Section 251-style exemptions, EU-wide law, and the risk of blocking research by treating primary and secondary uses as separate.
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chapters (7)
- 0:00Session introduction
- 0:25Citizen trust in health data
- 10:22Rare disease data sharing
- 18:34Digital self-determination
- 31:05NHS data sharing frameworks
- 43:27Privacy, consent, and public interest
- 1:18:36Closing remarks
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