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Who Owns the Data? Open Data for Healthcare.

Kostkova, P, Brewer, H, de Lusignan, S, Fottrell, E, Goldacre, B, Hart, G, Koczan, P, Knight, P, Marsolier, C, McKendry, RA, Ross, E, Sasse, A, Sullivan, R, Chaytor, S, Stevenson, O, Velho, R and Tooke, J (2016) Who Owns the Data? Open Data for Healthcare. Front Public Health, 4, 7.

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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.

Item Type: Article
Subjects : Health Care Management
Divisions : Faculty of Arts and Social Sciences > Surrey Business School
Authors :
AuthorsEmailORCID
Kostkova, PUNSPECIFIEDUNSPECIFIED
Brewer, HUNSPECIFIEDUNSPECIFIED
de Lusignan, SUNSPECIFIEDUNSPECIFIED
Fottrell, EUNSPECIFIEDUNSPECIFIED
Goldacre, BUNSPECIFIEDUNSPECIFIED
Hart, GUNSPECIFIEDUNSPECIFIED
Koczan, PUNSPECIFIEDUNSPECIFIED
Knight, PUNSPECIFIEDUNSPECIFIED
Marsolier, CUNSPECIFIEDUNSPECIFIED
McKendry, RAUNSPECIFIEDUNSPECIFIED
Ross, EUNSPECIFIEDUNSPECIFIED
Sasse, AUNSPECIFIEDUNSPECIFIED
Sullivan, RUNSPECIFIEDUNSPECIFIED
Chaytor, SUNSPECIFIEDUNSPECIFIED
Stevenson, OUNSPECIFIEDUNSPECIFIED
Velho, RUNSPECIFIEDUNSPECIFIED
Tooke, JUNSPECIFIEDUNSPECIFIED
Date : 2016
Identification Number : 10.3389/fpubh.2016.00007
Copyright Disclaimer : Copyright © 2016 Kostkova, Brewer, de Lusignan, Fottrell, Goldacre, Hart, Koczan, Knight, Marsolier, McKendry, Ross, Sasse, Sullivan, Chaytor, Stevenson, Velho and Tooke. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
Uncontrolled Keywords : data ownership, data policy, healthcare EPR, open data, privacy
Related URLs :
Depositing User : Symplectic Elements
Date Deposited : 08 Jun 2016 17:02
Last Modified : 26 Jul 2016 10:09
URI: http://epubs.surrey.ac.uk/id/eprint/810494

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