{"entity":{"id":"idea-data-privacy-preserving-linkage-tokens","kind":"idea","name":"Privacy-preserving linkage tokens for every cancer data holder","aka":[],"tldr":"Give each patient a scrambled code that is the same across hospitals, labs and registries, so records can be joined without anyone seeing names.","summary":"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.","asOf":"2026-09-08","links":[{"label":"Bottleneck evidence (Data silos): AACR Project GENIE","url":"https://www.aacr.org/professionals/research/aacr-project-genie/"}],"tags":[],"related":[],"cancers":[],"sections":["ai-computation"],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-data-silos"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"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.","test":"Tokenise one registry, one genomic lab and one hospital system; measure linkage rate against a gold-standard manually linked subset.","maturity":"early-clinical","actor":"data","cost":"medium","horizonYears":2},"route":"/ideas/idea-data-privacy-preserving-linkage-tokens/","neighbours":{"section":[{"id":"ai-computation","kind":"section","name":"AI & Computation","route":"/fronts/ai-computation/"}],"bottleneck":[{"id":"b-data-silos","kind":"bottleneck","name":"Data silos","route":"/bottlenecks/b-data-silos/"}]}}