Abstract
Dynamic consent allows patients to have greater control and oversight of sensitive health data.1 Using a secure electronic portal, patients can access a record of their consent decisions, amend them over time, and receive updates about how their data are being used. The concept has been trialled in several projects including a rare diseases network in the UK (the RUDY study)2 as an opportunity to improve informed consent to accommodate changes to research practices, including data being stored for unspecified future use. This is increasingly important to manage and support translational research. Implementing a two-way communication channel between patients and researchers/clinicians allows patients to keep up-to-date with research progress, assures researchers that patients have agreed to different elements of research, and caters for changes in protocols. It is increasingly being considered within a clinical context, particularly in areas where data flows between clinical care and research, for example in genome sequencing and precision medicine.
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