Loading
Patients would carry a digital consent that says how their trial samples and records may be reused, so their contribution is not locked to one company or study and they decide who benefits from it.
A patient-controlled dynamic consent record, interoperable across trial sponsors and health systems, in which patients specify permitted secondary uses (academic research, commercial research, specific diseases, return of results) and can update choices. Sponsors adopt the record in trial consent, and the data and biospecimen commons honour it. This shifts the legal basis for reuse from sponsor-controlled contracts to patient authorisation, unblocking most of the reuse that current bilateral contracts prevent, and gives patient groups negotiating power over how their collective contribution is used. Count Me In, the Metastatic Breast Cancer Project and the UK's Our Future Health show patients consent broadly when asked directly.
Shares Secrecy and intellectual property block collaboration, Data silos.
Shares A single oncology trial data trust with mandatory deposit within eighteen months, Secrecy and intellectual property block collaboration, Data silos.
Shares A single oncology trial data trust with mandatory deposit within eighteen months, Secrecy and intellectual property block collaboration.
Shares A single oncology trial data trust with mandatory deposit within eighteen months, Secrecy and intellectual property block collaboration.
Shares A single oncology trial data trust with mandatory deposit within eighteen months, Secrecy and intellectual property block collaboration.
Shares Secrecy and intellectual property block collaboration, Data silos.
Shares Patients lack understanding, navigation and agency, Data silos.
Shares Patients lack understanding, navigation and agency, Data silos.