A learning health care system secondary use of health data in research. (1)
summary
Panel presents concrete registry work and policy fixes: a register case–control of ~2,200 breast cancer patients links radiation records and shows 116% increased risk of ischemic heart disease; a 1.4 million–birth-cohort analysis finds childhood cancer RR ~1 after K‑vitamin injection; a Scandinavian national‑registry stack plus biobanks enables decades‑long follow‑up; technical governance uses trusted third party pseudonymization and a zone model risk framework to move data from care to research under opt‑out, arguing GDPR must allow risk‑based reuse.
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chapters (6)
- 0:00Introduction to the panel
- 3:32Register-based research
- 16:05Informed consent challenges
- 30:02Legal and ethical perspectives
- 48:27Data privacy frameworks
- 1:01:12Public interest and conclusion
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