{"entity":{"id":"idea-data-donor-card","kind":"idea","name":"A cancer data donor card: patient-controlled donation of records for research","aka":[],"tldr":"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.","summary":"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.","asOf":"2026-09-08","links":[{"label":"Count Me In","url":"https://joincountmein.org/"}],"tags":[],"related":[],"cancers":[],"sections":["ai-computation"],"technologies":[],"targets":[],"drugs":[],"companies":["patient-data-vault","cancer-commons"],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-data-silos","b-patient-voice"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Offering broad revocable data donation at diagnosis will be accepted by more than 70 percent of patients and will double the sample size available to registry-linked studies within five years, with withdrawal below 3 percent.","rationale":"Surveys consistently show 70 to 90 percent willingness to share; the barrier is that no one asks in a standard, portable way. Organ donation registers show that a one-time civic act can be scaled.","test":"Pilot in ten cancer centres: offer the donor card at first oncology visit, measure uptake, withdrawal and demographic skew over 24 months; compare research-ready cohort size with matched centres that do not offer it.","maturity":"speculative","actor":"patients","cost":"medium","horizonYears":3},"route":"/ideas/idea-data-donor-card/","neighbours":{"section":[{"id":"ai-computation","kind":"section","name":"AI & Computation","route":"/fronts/ai-computation/"}],"company":[{"id":"cancer-commons","kind":"company","name":"Cancer Commons","route":"/companies/cancer-commons/"},{"id":"patient-data-vault","kind":"company","name":"Patient Data Vault (data-vault.health)","route":"/companies/patient-data-vault/"}],"bottleneck":[{"id":"b-data-silos","kind":"bottleneck","name":"Data silos","route":"/bottlenecks/b-data-silos/"},{"id":"b-patient-voice","kind":"bottleneck","name":"Patients lack understanding, navigation and agency","route":"/bottlenecks/b-patient-voice/"}]}}