Personalized Consent Flow in Contemporary Data Sharing for Medical Research: A Viewpoint

Background. Health data personally collected by individuals with wearable devices and smartphones is becoming an important data source for healthcare, but also for medical research. Objective. To describe a new consent model that allows people to control their personally collected health data and determine to what extent they want to share these for research purposes. Methods. We developed, in close collaboration with patients, researchers, healthcare professionals, privacy experts, and an accredited Medical Ethical Review Committee, an innovative concept called “personalized consent flow” within a research platform connected to a personal health record. The development was an iterative process with informal meetings, semistructured interviews, and surveys. The final concept of the personalized consent flow was reviewed by patients and improved and approved by the same patients in a focus group. Results. This concept could result in optimal control for individual users, since they will answer questions about how they will share data. Furthermore, it enables users to collect data for specific studies and add expiration dates to their data. This work facilitates further discussion about dynamic and personalized consent. A pilot study with the personalized consent model is currently being carried out.

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