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.
- 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.
Pages like this
not linked directly; found by shared links- IdeaDynamic consent with usage receipts
Shares Patient Data Vault (data-vault.health), Patients lack understanding, navigation and agency, Data silos.
- IdeaA cancer data donor card: patient-controlled donation of records for research
Shares Patient Data Vault (data-vault.health), Patients lack understanding, navigation and agency, Data silos.
- IdeaA patient-held cancer record that travels across providers and borders
- IdeaPatient-held portable consent for reusing samples and data across studies
Shares Patients lack understanding, navigation and agency, Data silos.
- IdeaLet patients themselves donate their records and samples for ultra-rare cancers
Shares Patients lack understanding, navigation and agency, Data silos.
- CompanyCancer Commons
Shares Patients lack understanding, navigation and agency, Data silos.
- CompanyTempus AI
Shares Patients lack understanding, navigation and agency, Data silos.
- CollectionClinicalTrials.gov
Shares Patient Data Vault (data-vault.health), Patients lack understanding, navigation and agency, Data silos.