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.
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.
Cost to try
Medium ($1M to $50M)
Bottlenecks it attacks
- Data silos · Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.
- Fragmented care and guideline gaps · Patients fall between specialists, wait for referrals and often do not get the treatment guidelines say they should.