Resisting big data exploitations in public healthcare: free riding or distributive justice?

Vezyridis, Paraskevas; Timmons, Stephen

Abstract

We draw on findings from qualitative interviews with health data researchers, GPs and citizens who opted out from NHS England's care.data programme to explore controversies and negotiations around data sharing in the NHS. Drawing on theoretical perspectives from science and technology studies, we show that the new socio-technical, ethical and economic arrangements were resisted not only on the basis of individual autonomy and protection from exploitation, but also as a collective effort to protect NHS services and patient data. We argue that the resulting opt-outs were a call for more personal control over data uses. This was not because these citizens placed their personal interests above those of society. It was because they resisted proposed arrangements by networks of stakeholders, not seen as legitimate, to control flows and benefits of NHS patient data. Approaching informed consent this way helps us to explore resistance as a collective action for influencing the direction of such big data programmes towards the preservation of public access to healthcare as well as the distribution of ethical decision-making between independent, trustworthy institutions and individual citizens.

Citation

Vezyridis, P., & Timmons, S. (2019). Resisting big data exploitations in public healthcare: free riding or distributive justice?. Sociology of Health and Illness, 41(8), 1585-1599. https://doi.org/10.1111/1467-9566.12969

• Journal Article Type: Article
• Acceptance Date: May 21, 2019
• Online Publication Date: Aug 18, 2019
• Publication Date: 2019-11
• Deposit Date: Jun 10, 2019
• Publicly Available Date: Aug 19, 2020
• Journal: Sociology of Health & Illness
• Print ISSN: 0141-9889
• Electronic ISSN: 1467-9566
• Publisher: Wiley
• Peer Reviewed: Peer Reviewed
• Volume: 41
• Issue: 8
• Pages: 1585-1599
• DOI: https://doi.org/10.1111/1467-9566.12969
• Keywords: NHS; Caredata; Informed consent; Big data; General practice; Medical records
• Public URL: https://nottingham-repository.worktribe.com/output/2165800
• Publisher URL: https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12969
• Additional Information: This is the peer reviewed version of the following article: Vezyridis, P. and Timmons, S. (2019), Resisting big data exploitations in public healthcare: Free riding or distributive justice?. Sociol Health Illn. doi:10.1111/1467-9566.12969, which has been published in final form at https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.12969. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions.
• Contract Date: Jun 12, 2019