title: 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.
authors.affiliation: Department of Computer Science, University College London (UCL) , London , UK.
authors.forename: Patty
authors.initials: P
authors.lastname: Kostkova
authors.affiliation: Parliamentary Office of Science and Technology , London , UK.
authors.forename: Helen
authors.initials: H
authors.lastname: Brewer
authors.affiliation: Department of Clinical and Experimental Medicine, University of Surrey, Guildford, and Royal College of General Practitioners Research and Surveillance Centre , London , UK.
authors.forename: Simon
authors.initials: S
authors.lastname: de Lusignan
authors.affiliation: London School of Hygiene & Tropical Medicine , London , UK.
authors.forename: Edward
authors.initials: E
authors.lastname: Fottrell
authors.affiliation: Faculty of Population Health Sciences, University College London (UCL) , London , UK.
authors.forename: Ben
authors.initials: B
authors.lastname: Goldacre
authors.affiliation: London School of Hygiene & Tropical Medicine , London , UK.
authors.forename: Graham
authors.initials: G
authors.lastname: Hart
authors.affiliation: University College London Partners (UCLP) , London , UK.
authors.forename: Phil
authors.initials: P
authors.lastname: Koczan
authors.affiliation: Department of Health , London , UK.
authors.forename: Peter
authors.initials: P
authors.lastname: Knight
authors.affiliation: Cisco Consulting Services, Life Sciences, Health and Care , Paris , France.
authors.forename: Corinne
authors.initials: C
authors.lastname: Marsolier
authors.affiliation: The London Centre for Nanotechnology and Division of Medicine, University College London (UCL) , London , UK.
authors.forename: Rachel A
authors.initials: RA
authors.lastname: McKendry
authors.affiliation: Chatham House Centre on Global Health Security , London , UK.
authors.forename: Emma
authors.initials: E
authors.lastname: Ross
authors.affiliation: Department of Computer Science, University College London (UCL) , London , UK.
authors.forename: Angela
authors.initials: A
authors.lastname: Sasse
authors.affiliation: Health Informatics Group, Royal College of General Practitioners , London , UK.
authors.forename: Ralph
authors.initials: R
authors.lastname: Sullivan
authors.affiliation: UCL Public Policy, UCL , London , UK.
authors.forename: Sarah
authors.initials: S
authors.lastname: Chaytor
authors.affiliation: UCL Public Policy, UCL , London , UK.
authors.forename: Olivia
authors.initials: O
authors.lastname: Stevenson
authors.affiliation: Department of Science and Technology Studies, UCL , London , UK.
authors.forename: Raquel
authors.initials: R
authors.lastname: Velho
authors.affiliation: School of Life and Medical Sciences, UCL , London , UK.
authors.forename: John
authors.initials: J
authors.lastname: Tooke
keywords: data ownership; data policy; healthcare EPR; open data; privacy