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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.
Shares Patient Data Vault (data-vault.health), Patients lack understanding, navigation and agency, Data silos.
Shares Patient Data Vault (data-vault.health), Patients lack understanding, navigation and agency, Data silos.
Shares Cancer Commons, Data silos.
Shares Cancer Commons, Data silos.
Shares Patients lack understanding, navigation and agency, Data silos.
Shares Patients lack understanding, navigation and agency, Data silos.