Understanding the care.data conundrum: New information flows for economic growth

Abstract

The analysis of data from electronic health records aspires to facilitate healthcare efficiencies and biomedical innovation. There are also ethical, legal and social implications from the handling of sensitive patient information. The paper explores the concerns, expectations and implications of the National Health Service (NHS) England care.data programme: a national data sharing initiative of linked electronic health records for healthcare and other research purposes. Using Nissenbaum's contextual integrity of privacy framework through a critical Science and Technology Studies (STS) lens, it examines the way technologies and policies are developed to promote sustainability, governance and economic growth as the de facto social values, while reducing privacy to an individualistic preference. The state, acting as a new, central data broker reappropriates public ownership rights and establishes those information flows and transmission principles that facilitate the assetisation of NHS datasets for the knowledge economy. Various actors and processes from other contexts attempt to erode the public healthcare sector and privilege new information recipients. However, such data sharing initiatives in healthcare will be resisted if we continue to focus only on the monetary and scientific values of these datasets and keep ignoring their equally important social and ethical values.

Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada

“…Including the public in development of these policies is consistent with a recent consensus statement on principles of public engagement for data-intensive research [11]. The importance of doing so is highlighted in cases where the perception of inadequate consultation resulted in data sharing projects being derailed (e.g., care.data in the UK) [12,13]. Resulting policies can ultimately be informed by both expert knowledge and public perspectives and interests.…”

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

“…However, the potential value of these datasets translated by care.data as a ‘matters of fact’ (Latour ) 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 , Welsh and Wynne ). The attempt by the programme's leaders to black‐box the aggregation and assetisation of NHS patient datasets via an ‘all or nothing’ approach to informed consent (see also Vezyridis and Timmons ) and their limited engagement with public deliberation destabilised the hybrid (Latour ). The ‘illegal and completely cavalier way’ (Citizen 11) care.data was to deal with their personal health data, and with the mandatory extractions for GPs raised individual and societal concerns (Latour ) around the construction of values and entanglements of NHS patient datasets within and beyond public healthcare.

.. at some point I might opt back in, it's not that I'm against the principle, I just don't think [the programme's leaders] have got it right yet.

…”

“…However, due to a public outcry, which resulted in approximately 1.5 m opt-outs, the programme never fully materialised and was eventually terminated in 2016 after the National Data Guardian's (NDG) review (Lea 2016). Care.data's failure has been attributed to poor communication, security risks and ambiguous information governance and data dissemination practices (HSCIC 2014, Vezyridis andTimmons 2017). Similar national programmes, for example in Denmark (Wadmann and Hoeyer 2018), are also under attack for their opaque dissemination practices in support of governmental and commercial contexts of exploitation.…”

“…Rather than studying moral frameworks from idealist viewpoints, it explores the practices of doing ethics within the material-semiotic networks, without making value judgements and by being attentive to the ontologies and normativities involved in mundane practices (Mol 2013). Previously we examined the scientific impetus and rationale for exploiting NHS patient datasets (Vezyridis and Timmons 2016a), the state's technolegal facilitation of decontextualised NHS patient data movements (Vezyridis and Timmons 2017) and the design affordances of the opt-out form (Vezyridis and Timmons 2016b). Here we focus our analysis on 'the dark side of the translation process and the disruption of the actor-network' (Galis and Lee 2014: 155) to understand how concerned citizens understand and practice ethics, politics and dissidence via the opt-out.…”

A balance of trust in the use of government administrative data

“…The failure of care.data has been explored from many different perspectives (Mann 2016;Torjesen 2014;Carter et al 2015;Hays and Daker-White 2015;van Staa et al 2016;Vezyridis and Timmons 2017). Concerns about trustworthiness of the proposals over privacy and data security, a lack of adequate communication around the safeguards for access and use of the data, and concerns over data commercialisation led to its demise.…”