Health authorities increasingly request that general practitioners use information and communication technologies such as electronic patient records for accountability purposes. This article deals with the use of EPRs among general practitioners in Britain. It examines two ways in which GPs use the EPR for accountability purposes. One way is to generate audit reports on the basis of the information that has been entered into the record. The other is to let the computer intervene in the clinical process through prompts. The (...) article argues that GPs' ambivalence toward using the EPR makes them active in finding ways that turn the EPR into a meaningful tool for them, that is, a tool that helps them provide what they see as good care. The article's main contribution is to show how accountability and autonomy are coproduced; less professional autonomy does not follow from more requests to document one's work. Instead, new forms of autonomy are produced in the sociotechnical network that is made up by health policy and local engagements with patients and technology. (shrink)

In 1927, Walter Lippmann published The Phantom Public, denouncing the ‘mystical fallacy of democracy.’ Decrying romantic democratic models that privilege self-governance, he writes: “I have not happened to meet anybody, from a President of the United States to a professor of political science, who came anywhere near to embodying the accepted ideal of the sovereign and omnicompetent citizen.” Almost 90 years later, Lippmann’s pragmatism is as relevant as ever, and should be applied in new contexts where similar self-governance concerns persist. (...) This paper does just that, repurposing Lippmann’s argument in the context of the ongoing debate over the role of the digital citizen in Big Data management. It is argued that proposals by the Federal Trade Commission, the White House and the US Congress, championing failed notice and choice privacy policy, perpetuate a self-governance fallacy comparable to Lippmann’s, referred to here as the fallacy of data privacy self-management. Even if the digital citizen had the faculties and the system for data privacy self-management, the digital citizen has little time for data governance. We desire the freedom to pursue the ends of digital production, without being inhibited by the means. We want privacy, and safety, but cannot complete all that is required for its protection. If it is true that the fallacy of democracy is similar to the fallacy of data privacy self-management, then perhaps the pragmatic solution is representative data management: a combination of non/for-profit digital dossier management via infomediaries that can ensure the protection of personal data, while freeing individuals from what Lippmann referred to as an ‘unattainable ideal.’. (shrink)

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 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 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. (shrink)

Written as the introduction to a special issue of Body & Society on the topic of animation and automation, this article considers the interrelation of those two terms through readings of relevant work in film studies and science and technology studies (STS), inflected through recent scholarship on the body. Drawing upon historical and contemporary examples, we trace how movement is taken as a sign of life, while living bodies are translated through the mechanisms of artifice. Whereas film studies has drawn (...) upon work ranging from production history to semiotics and psychoanalysis to conceptualize the ways in which the appearance of life on the cinema screen materializes subjectivities beyond it, STS has developed a corpus of theoretical and empirical scholarship that works to refigure material-semiotic entanglements of subjects and objects. In approaching animation and automation through insights developed within these two fields we hope to bring them into closer dialogue with each other and with studies of the body, given the convergence of their shared concerns with affective materializations of life. More specifically, an interest in the moving capacities of animation, and in what gets rendered invisible in discourses of automation, is central to debates regarding the interdependencies of bodies and machines. Animation is always in the end a relational effect, it seems, while automation implies the continuing presence of hidden labour and care. (shrink)

An ‘Information Centre’ has recently been established by law which has the power to collect, collate and provide access to the medical information forall patients treated by the National Health Service in England, whether in hospitals or by General Practitioners. This so-called ‘care.data’ scheme has given rise to major and ongoing controversies. We will sketch the background of the scheme and look at the responses it has elicited from citizens and medical professionals. In Autumn 2013, NHS England set up a (...) care.data website where citizens could record their concerns regarding the collection of health-related data by the Information Centre. We have reviewed all the comments on this website up until June 2015. We have also analysed the readers’ comments on the coverage of the care.data scheme in one of the main national UK newspapers. When discussing the responses of citizens, we will make a distinction between the problems that citizens detect and the solutions they propose. The solutions that are being perceived as the most relevant ones can be summarized as follows: citizens wish to further the common good without being manipulated into doing it, while at the same time being safeguarded against various abuses. The issue of trust turns out to figure prominently. Our analysis of reactions to the scheme in no way pretends to be exhaustive, yet it provides various relevant insights into the concerns identified by citizens as well as medical professionals. These concerns, moreover, have a more general relevance in relation to other contexts of medical data-mining as well as biobank research. Our analysis also offers important pointers as to how those concerns might be addressed. (shrink)