ideasIdea
Dynamic consent with usage receipts
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.
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.
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.
What would test it
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
Who has to act
patients
Cost to try
Small (under $1M)
Years to first evidence
2
Bottlenecks it attacks
- 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.