Frontiers | Who Owns the Data? Open Data for Healthcare | Digital Health

"The recent emergence of Big Data in healthcare [including large linked data from electronic patient records (EPR) as well as streams of real-time geo-located health data collected by personal wearable devices, etc.] and the open data (movement enabling sharing datasets) are creating new challenges around ownership of personal data while opening new research opportunities and drives for commercial exploitation (1). A balance must be struck between an individual’s desire for privacy and their desire for good evidence to drive healthcare, which may sometimes be in conflict. Opportunities for research on EPR and public health medical datasets have already demonstrated impressive results in generating new evidence (2); however, new computer science approaches analyzing real-time Big Data streams generated by social media and increasingly popular tracking/wearable devices have re-charted the data ownership landscape. And dramatically accelerated computing research activities into pilots demonstrating improving personal health outcomes and disease management through knowledge discovery and personalized medicine (3, 4) to provide signals for early warning for outbreaks and pandemics (5, 6) as well as to track citizens response (7) ..."