Automatic weekly linkage of cancer registries to deaths, prescriptions and imaging
Connect the cancer registry to death records, pharmacy records and scan reports automatically every week, so we always know what happened to every patient without anyone filling in a form.
Most registries capture diagnosis well and outcomes poorly, with follow-up lagging years. Nordic registries and England's National Disease Registration Service show that deterministic linkage to death, hospital episode, prescribing and imaging records makes near-complete outcome capture routine. The proposal funds automated pipelines with statutory access and weekly refresh in every registry country, plus derivation of progression proxies from imaging report text using validated NLP.
- Data silos · Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.
- Weak real-world evidence and registries · We do not reliably know what happens to patients after approval, so we cannot tell which drugs deliver in practice.
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not linked directly; found by shared links- IdeaNo mCODE, no payment: tie oncology reimbursement to a minimal structured record
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Shares Weak real-world evidence and registries, Real-world evidence, Data silos.
- IdeaA national late-effects registry linking treatment exposures to outcomes decades later
Shares SEER (Surveillance, Epidemiology, and End Results), Weak real-world evidence and registries, Data silos.
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Shares Weak real-world evidence and registries, Real-world evidence, Data silos.
- IdeaA national cancer data space with one legal front door
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- IdeaEmulate the trial in real-world data first to decide which trials to run
Shares SEER (Surveillance, Epidemiology, and End Results), Weak real-world evidence and registries, Real-world evidence.
- IdeaMake a population cancer registry a condition of every cancer aid programme
Shares SEER (Surveillance, Epidemiology, and End Results), Weak real-world evidence and registries, Data silos.