# A patient-owned, portable complete cancer record in a standard format

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

## TL;DR

Your entire cancer history, including scans, pathology, genomics and treatments, lives in a record you control and can share in one click with any hospital, trial or second-opinion service.

## Summary

Records are trapped in institutional systems; patients carry paper and CDs to second opinions. The mCODE (minimal Common Oncology Data Elements) FHIR standard now defines the core cancer data set. The proposal is a patient-held record service that pulls mCODE data from every provider under patient consent, stores it under the patient's control, and exposes it to trial-matching, research donation and clinicians the patient chooses. Regulators would require providers to export mCODE on request.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- Hypothesis: Patients with portable records obtain second opinions and trial matches faster, experience fewer duplicated tests, and contribute to research at higher rates than those without.
- Rationale: Banking and travel solved portability with standards and legal rights of access; oncology has the standard and, in many jurisdictions, the legal right, but no product. The patient is the only actor with a consistent interest in the complete record.
- Proposed test: Pilot with three health systems and one trial-matching service: measure completeness of assembled records, time to second opinion, duplicated imaging and consent-to-research rates versus controls.
- Maturity: early-clinical
- Actor: data

## Sources

- mCODE initiative: https://mcodeinitiative.org/

## Connected records

- companies: [Patient Data Vault (data-vault.health)](https://onco.cc/companies/patient-data-vault/)
- bottlenecks: [Data silos](https://onco.cc/bottlenecks/b-data-silos/), [Patients lack understanding, navigation and agency](https://onco.cc/bottlenecks/b-patient-voice/)

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