# Dynamic consent with usage receipts

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

## TL;DR

An app where patients choose what their data can be used for, see every time it is used, and can switch permissions on or off.

## Summary

Dynamic consent replaces the one-off paper form with an ongoing digital relationship: granular preferences (commercial use, genomic data, contact for trials), notifications when data are used, and revocation that propagates to data holders. Pilots in Australia (CTRL platform) and rare-disease registries have shown feasibility. The oncology-specific version adds automatic trial-matching alerts as a return of value to the patient.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- Hypothesis: Patients given dynamic consent will permit broader use (more categories ticked) and remain enrolled longer than patients under static broad consent, because transparency and reciprocity increase trust.
- Rationale: Trust, not privacy law, is what limits sharing; usage receipts turn an abstract promise into a verifiable one. Rare-disease cohorts using dynamic consent report higher retention.
- Proposed test: Randomise consecutive patients at two centres to static broad consent versus a dynamic consent app; compare permission breadth, withdrawal at 12 months, and patient-reported trust.
- Maturity: early-clinical
- Actor: patients

## Sources

- Bottleneck evidence (Data silos): AACR Project GENIE: https://www.aacr.org/professionals/research/aacr-project-genie/

## Connected records

- fronts: [AI & Computation](https://onco.cc/fronts/ai-computation/)
- technologies: [AI trial matching & clinical decision support](https://onco.cc/technologies/ai-trial-matching/)
- companies: [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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