ideasIdea
A patient-owned, portable complete cancer record in a standard format
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.
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.
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.
What would test it
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
Who has to act
data
Cost to try
Medium ($1M to $50M)
Years to first evidence
3
Bottlenecks it attacks
- Patients lack understanding, navigation and agency · Most patients cannot understand their options, find trials, or push back, so decisions are made for them.
- Data silos · Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.