ideasIdea
Privacy-preserving linkage tokens for every cancer data holder
Give each patient a scrambled code that is the same across hospitals, labs and registries, so records can be joined without anyone seeing names.
Record linkage across holders fails without a shared identifier; where national IDs exist (Nordics) linkage is trivial, elsewhere it is probabilistic and lossy. Privacy-preserving record linkage using salted hashes of identifiers (as used by Datavant in the US and Bloom-filter approaches in Australia and Germany) allows joining without exposing identity. The proposal mandates a common tokenisation scheme, run by a public trusted third party, for all holders of cancer data.
Hypothesis
A common token will raise linkage rates between registries, genomic labs and hospitals from below 70 percent (probabilistic) to above 97 percent, at no measurable privacy cost.
Rationale
Where national identifiers exist, near-complete linkage has powered decades of registry research; tokens replicate the function without a national ID.
What would test it
Tokenise one registry, one genomic lab and one hospital system; measure linkage rate against a gold-standard manually linked subset.
Maturity
early clinical
Who has to act
data
Cost to try
Medium ($1M to $50M)
Years to first evidence
2
Bottlenecks it attacks
- Data silos · Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.