{"entity":{"id":"idea-data-patient-held-cancer-record","kind":"idea","name":"A patient-held cancer record that travels across providers and borders","aka":[],"tldr":"Patients would carry their full cancer history, scans and test results in a standard digital bundle they control and can hand to any doctor anywhere.","summary":"Patients see multiple providers across systems and countries; records do not follow them. A FHIR-based, patient-held record (International Patient Summary plus mCODE bundle, images via DICOMweb links) stored in a patient-controlled vault would make the patient the integration point. Apple Health records, the EU patient summary, and Blue Button show pieces exist; oncology-specific completeness (staging, regimens, genomics, imaging) is missing.","asOf":"2026-09-08","links":[{"label":"International Patient Summary (HL7)","url":"https://hl7.org/fhir/uv/ips/"}],"tags":[],"related":[],"cancers":[],"sections":["ai-computation"],"technologies":[],"targets":[],"drugs":[],"companies":["patient-data-vault"],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-data-silos","b-care-fragmentation"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Patients with a complete portable record will experience fewer repeated tests and faster second opinions, and consented export from these vaults will become a significant source of research data.","rationale":"Where patients hold the record, fragmentation between providers stops being a technical problem; the patient becomes the consent and integration authority.","test":"Provide the record to 500 patients with metastatic disease seen across two or more systems; measure repeat imaging, time to second opinion, and patient-reported burden versus matched controls.","maturity":"early-clinical","actor":"patients","cost":"medium","horizonYears":3},"route":"/ideas/idea-data-patient-held-cancer-record/","neighbours":{"section":[{"id":"ai-computation","kind":"section","name":"AI & Computation","route":"/fronts/ai-computation/"}],"company":[{"id":"patient-data-vault","kind":"company","name":"Patient Data Vault (data-vault.health)","route":"/companies/patient-data-vault/"}],"bottleneck":[{"id":"b-data-silos","kind":"bottleneck","name":"Data silos","route":"/bottlenecks/b-data-silos/"},{"id":"b-care-fragmentation","kind":"bottleneck","name":"Fragmented care and guideline gaps","route":"/bottlenecks/b-care-fragmentation/"}],"idea":[{"id":"idea-data-72-hour-second-opinion-network","kind":"idea","name":"A digital second-opinion network answering community oncologists within 72 hours","route":"/ideas/idea-data-72-hour-second-opinion-network/"}]}}