Abstract
Research on large shared medical datasets and data-driven research are gaining fast momentum and provide major opportunities for improving health systems as well as individual care. Such open data can shed light on the causes of disease and effects of treatment, including adverse reactions side-effects of treatments, while also facilitating analyses tailored to an individual’s characteristics, known as personalized or “stratified medicine.” Developments, such as crowdsourcing, participatory surveillance, and individuals pledging to become “data donors” and the “quantified self” movement (where citizens share data through mobile device-connected technologies), have great potential to contribute to our knowledge of disease, improving diagnostics, and delivery of healthcare and treatment. There is not only a great potential but also major concerns over privacy, confidentiality, and control of data about individuals once it is shared. Issues, such as user trust, data privacy, transparency over the control of data ownership, and the implications of data analytics for personal privacy with potentially intrusive inferences, are becoming increasingly scrutinized at national and international levels. This can be seen in the recent backlash over the proposed implementation of care.data, which enables individuals’ NHS data to be linked, retained, and shared for other uses, such as research and, more controversially, with businesses for commercial exploitation. By way of contrast, through increasing popularity of social media, GPS-enabled mobile apps and tracking/wearable devices, the IT industry and MedTech giants are pursuing new projects without clear public and policy discussion about ownership and responsibility for user-generated data. In the absence of transparent regulation, this paper addresses the opportunities of Big Data in healthcare together with issues of responsibility and accountability. It also aims to pave the way for public policy to support a balanced agenda that safeguards personal information while enabling the use of data to improve public health.
Highlights
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 are creating new challenges around ownership of personal data while opening new research opportunities and drives for commercial exploitation [1]
Opportunities for research on EPR and public health medical datasets have already demonstrated impressive results in generating new evidence [2]; 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
User privacy and ownership of user-generated data remain an under-explored territory from policy and regulatory perspectives while becoming a booming business for social media industry and MedTech manufactures [10]
Summary
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]. Being directly collected by IT and social media companies and MedTech manufactures through tracking/wearable devices and social media with commonly no opt-out options, potentially subject to personal intrusion using data analytics driven marketing and unregulated sharing and use [13]. This observation raises interesting questions: what are the motivations of citizens who are at the intersection of these two groups and what is the size of this “contradicting” population? Perhaps more important than ownership and consent for sharing data, is the question of: by whom and for what purposes are shared citizens data used and how could decisions be effectively controlled by citizens themselves?
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