A cancer data donor card: patient-controlled donation of records for research
Like an organ donor card, anyone with cancer could sign once to let their medical records and leftover samples be used for research, and change their mind at any time.
Most cancer patients say they would share their data for research, yet consent is sought piecemeal per study. The proposal is a national, patient-initiated registration (via the patient portal or a paper card) that grants broad, revocable consent for secondary use of records, images and residual tissue, with a public dashboard of what the data have been used for. Count Me In and the UK Biobank show that broad consent at scale is feasible; the Metastatic Breast Cancer Project enrolled thousands of patients directly.
- Data silos · Records, scans, genomes and outcomes sit in separate systems that cannot talk. Every patient's experience is lost to the next.
- Patients lack understanding, navigation and agency · Most patients cannot understand their options, find trials, or push back, so decisions are made for them.
Pages like this
not linked directly; found by shared links- IdeaA patient-owned, portable complete cancer record in a standard format
Shares Patient Data Vault (data-vault.health), Patients lack understanding, navigation and agency, Data silos.
- IdeaDynamic consent with usage receipts
Shares Patient Data Vault (data-vault.health), Patients lack understanding, navigation and agency, Data silos.
- IdeaA live 'seats available' feed for trial slots, like airline inventory
Shares Cancer Commons, Data silos.
- IdeaA patient-held cancer record that travels across providers and borders
- IdeaTrial matching inside the electronic record at the moment a treatment is chosen
Shares Cancer Commons, Data silos.
- 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.
- TechnologyAI trial matching & clinical decision support
Shares Cancer Commons, Patient Data Vault (data-vault.health), Patients lack understanding, navigation and agency.