# A patient-held cancer record that travels across providers and borders

Source: https://onco.cc/ideas/idea-data-patient-held-cancer-record/  
OnCo record `idea-data-patient-held-cancer-record` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- 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.
- Proposed 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

## Sources

- International Patient Summary (HL7): https://hl7.org/fhir/uv/ips/

## Connected records

- fronts: [AI & Computation](https://onco.cc/fronts/ai-computation/)
- companies: [Patient Data Vault (data-vault.health)](https://onco.cc/companies/patient-data-vault/)
- bottlenecks: [Data silos](https://onco.cc/bottlenecks/b-data-silos/), [Fragmented care and guideline gaps](https://onco.cc/bottlenecks/b-care-fragmentation/)
- ideas: [A digital second-opinion network answering community oncologists within 72 hours](https://onco.cc/ideas/idea-data-72-hour-second-opinion-network/)

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