{"entity":{"id":"idea-fund-portable-patient-consent","kind":"idea","name":"Patient-held portable consent for reusing samples and data across studies","aka":[],"tldr":"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.","summary":"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.","asOf":"2026-09-08","links":[{"label":"Count Me In","url":"https://joincountmein.org/"}],"tags":[],"related":["idea-fund-trial-biospecimen-commons","idea-fund-trial-data-trust","idea-fund-patient-burden-review-criterion"],"cancers":[],"sections":[],"technologies":[],"targets":[],"drugs":[],"companies":[],"institutions":[],"pathways":[],"terms":[],"trials":[],"people":[],"bottlenecks":["b-ip-collaboration","b-patient-voice","b-data-silos"],"keyPapers":[],"journals":[],"dependsOn":[],"notes":[],"hypothesis":"Where portable consent is offered, more than 80% of trial participants authorise broad research reuse, and secondary use of their samples and data (studies approved) is at least twice that of participants under conventional sponsor-specific consent.","rationale":"Direct-to-patient research projects consistently show high willingness to share broadly; the barrier to reuse is contractual and institutional, and consent that travels with the patient removes the sponsor as gatekeeper. Dynamic consent platforms have been piloted in genomics programmes.","test":"Deploy portable consent in three trials across two sponsors; measure authorisation rates, subsequent approved reuse and participant satisfaction against matched conventional trials.","maturity":"early-clinical","actor":"patients","cost":"medium","horizonYears":3},"route":"/ideas/idea-fund-portable-patient-consent/","neighbours":{"idea":[{"id":"idea-fund-trial-biospecimen-commons","kind":"idea","name":"A commons for leftover trial biospecimens with standard access for approved research","route":"/ideas/idea-fund-trial-biospecimen-commons/"},{"id":"idea-fund-patient-burden-review-criterion","kind":"idea","name":"A formal patient-burden score in grant peer review","route":"/ideas/idea-fund-patient-burden-review-criterion/"},{"id":"idea-fund-trial-data-trust","kind":"idea","name":"A single oncology trial data trust with mandatory deposit within eighteen months","route":"/ideas/idea-fund-trial-data-trust/"}],"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/"},{"id":"b-ip-collaboration","kind":"bottleneck","name":"Secrecy and intellectual property block collaboration","route":"/bottlenecks/b-ip-collaboration/"}]}}