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 use. 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.
Highlights
Data-based research from electronic health records (EHRs) has been growing steadily in the UK for more than two decades (Vezyridis and Timmons 2016a)
This research was designed to address these gaps, for national data sharing programmes in healthcare by focusing on three groups involved in care.data: health data researchers, General Practitioners (GPs) and citizens who have opted out from, or have campaigned against the programme
We do this by applying an Actor-Network Theory (ANT) (Latour 1988) approach to ask; what did resistance to care.data elucidate on how data from electronic health records could be exploited as a public good? What could be the role of opt-outs from big data programmes in the context of national health systems? ANT is a set of methodological tools to explore the social as a heterogeneous entanglement of everstabilising and proliferating associations between human and nonhuman entities (Latour 1988)
Summary
Data-based research from electronic health records (EHRs) has been growing steadily in the UK for more than two decades (Vezyridis and Timmons 2016a). The potential value of these datasets translated by care.data as ‘matters of fact’ (Latour 2004b) for the improvement of health (and wealth) included a prescriptive policy normativity of exclusion of patients-citizens and GPs from co-shaping the exploitation of this public good (Jasanoff and Kim 2009, Welsh and Wynne 2013).
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