# A cancer data donor card: patient-controlled donation of records for research

Source: https://onco.cc/ideas/idea-data-donor-card/  
OnCo record `idea-data-donor-card` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- 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.
- Proposed 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

## Sources

- Count Me In: https://joincountmein.org/

## Connected records

- fronts: [AI & Computation](https://onco.cc/fronts/ai-computation/)
- companies: [Cancer Commons](https://onco.cc/companies/cancer-commons/), [Patient Data Vault (data-vault.health)](https://onco.cc/companies/patient-data-vault/)
- bottlenecks: [Data silos](https://onco.cc/bottlenecks/b-data-silos/), [Patients lack understanding, navigation and agency](https://onco.cc/bottlenecks/b-patient-voice/)

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