An increasing number of patients and healthy people collect health data with wearable devices such as activity trackers, watches and phones.
An increasing number of patients and healthy people collect health data with wearable devices such as activity trackers, watches and phones. This is not only relevant for monitoring their state of health or personal health goals, but also for research purposes. Since these belong to the individual that collected them, new models are urgently needed to allow them to determine the extent to which they want to share data.
Together with patients, the local ethics committee, privacy experts and researchers, we developed an online system (App) that provides ‘dynamic consent’. This implies that users can create their own data policy containing their ‘rules of data sharing’ such as what data are shared, or which (type of) study. Moreover, they can determine how long data will be available by adding expiration dates.
Barend HeerenProgramma manager HereIsMyData
“This is my data, and I want it to be used conform my own policy instead of confirming to all kinds of individual requests”