Who Owns the Data? Open Data for Healthcare

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.

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“…Sharing research data has attracted increasing interest because associating large healthcare datasets allow enriching data on symptoms, diagnoses diseases, treatments and prescriptions, in addition to providing increased effectual semantic access to the evidence base (Kostkova et al, ). Data sharing could reduce research waste by enabling new types of research.…”

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“…Open data is a repository of data that can be freely used and redistributed by anyone [31]. Open data creates opportunities for exchange, in which organizations can share their own data, and use other data that are available [32]. …”

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“…However, data sharing not only has a great potential, but also major concerns over privacy, confidentiality, and control of data about individuals [59]. These concerns particularly apply to sensor data like GPS that can be re-identified [60].…”