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; Tooke, J; (2016) Who Owns the Data? Open Data for Healthcare. Front Public Health, 4. p. 7. ISSN 2296-2565 DOI: https://doi.org/10.3389/fpubh.2016.00007

[img] Text - Published Version
License:

Download (155kB)

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
Faculty and Department: Faculty of Epidemiology and Population Health > Dept of Non-Communicable Disease Epidemiology
Research Centre: EHR Research Group
Centre for Evaluation
PubMed ID: 26925395
URI: http://researchonline.lshtm.ac.uk/id/eprint/2533967

Statistics


Download activity - last 12 months
Downloads since deposit
54Downloads
50Hits
Accesses by country - last 12 months
Accesses by referrer - last 12 months
Impact and interest
Additional statistics for this record are available via IRStats2

Actions (login required)

Edit Item Edit Item