Personal health technologies such as apps and wearables that generate health and behavior data close to the individual patient are envisioned to enable personalized healthcare - and self-care. And yet, they are consumer devices. Proponents of these devices presuppose that measuring will be helpful, and that data will be meaningful. However, a growing body of research suggests that self-tracking data does not necessarily make sense to users. Drawing together data studies and digital health research, we aim to further research on (...) data ambivalence, a term we use to refer to the ambiguities and uncertainties people experience when interpreting their own data, as well as the critical obligation towards cultivating ethically sound uses and responses to such data in context. We develop the relationship between data, interpretation, and context as a central theoretical and practical problem in the datafication of healthcare. We then show how interpretation and context matter for data ambivalence through an empirical study of heart patients with an implanted advanced pacemaker who were offered a Fitbit wristband for self-tracking as part of a research project. We argue that the hope, anxiety, and doubt connected to the promise and accuracy of data are tempered by the context and purpose of self-tracking, and by individual circumstances. Finally, we link the findings on context-sensitivity in data interpretation to questions about response-ability in cloud-based care infrastructures. We discuss the ethical dilemmas associated with the use of commercial wellness-technologies in healthcare, and with researching such emerging practices. (shrink)

Low levels of public trust in data practices have led to growing calls for changes to data-driven systems, and in the EU, the General Data Protection Regulation provides a legal motivation for such changes. Data management is a vital component of data-driven systems, but what constitutes ‘good’ data management is not straightforward. Academic attention is turning to the question of what ‘good data’ might look like more generally, but public views are absent from these debates. This paper addresses this gap, (...) reporting on a survey of the public on their views of data management approaches, undertaken by the authors and administered in the UK, where departure from the EU makes future data legislation uncertain. The survey found that respondents dislike the current approach in which commercial organizations control their personal data and prefer approaches that give them control over their data, that include oversight from regulatory bodies or that enable them to opt out of data gathering. Variations of data trusts – that is, structures that provide independent stewardship of data – were also preferable to the current approach, but not as widely preferred as control, oversight and opt out options. These features therefore constitute ‘good data management’ for survey respondents. These findings align only in part with principles of good data identified by policy experts and researchers. Our findings nuance understandings of good data as a concept and of good data management as a practice and point to where further research and policy action are needed. (shrink)

The Nordic countries aim to have a unique place within the European and global health data economy. They have extensive nationally maintained and centralized health data records, as well as numerous biobanks where data from individuals can be connected based on personal identification numbers. Much of this phenomenon can be attributed to the emergence and development of the Nordic welfare state, where Nordic countries sought to systematically collect large amounts of population data to guide decision making and improve the health (...) and living conditions of the population. Recently, however, the so-called Nordic gold mine of data is being re-imagined in a wholly other context, where data and its ever-increasing logic of accumulation is seen as a driver for economic growth and private business development. This article explores the development of policies and strategies for health data economy in Denmark and Finland. We ask how nation states try to adjust and benefit from new pressures and opportunities to utilize their data resources in data markets. This raises questions of social sustainability in terms of states being producers, providers, and consumers of data. The data imaginaries related to emerging health data markets also provide insight into how a broad range of different data sources, ranging from hospital records and pharmacy prescriptions to biobank sample data, are brought together to enable “full-scale utilization” of health and welfare data. (shrink)

Data activism, promoting new forms of civic and political engagement, has emerged as a response to problematic aspects of datafication that include tensions between data openness and data ownership, and asymmetries in terms of data usage and distribution. In this article, we discuss MyData, a data activism initiative originating in Finland, which aims to shape a more sustainable citizen-centric data economy by means of increasing individuals' control of their personal data. Using data gathered during long-term participant-observation in collaborative projects with (...) data activists, we explore the internal tensions of data activism by first outlining two different social imaginaries – technological and socio-critical – within MyData, and then merging them to open practical and analytical space for engaging with the socio-technical futures currently in the making. While the technological imaginary favours data infrastructures as corrective measures, the socio-critical imaginary questions the effectiveness of technological correction. Unpacking them clarifies the kinds of political and social alternatives that different social imaginaries ascribe to the notions underlying data activism, and highlights the need to consider the social structures in play. The more far-reaching goal of our exercise is to provide practical and analytical resources for critical engagement in the context of data activism. By merging technological and socio-critical imaginaries in the work of reimagining governing structures and knowledge practices alongside infrastructural arrangements, scholars can depart from the most obvious forms of critique, influence data activism practice, and formulate data ethics and data futures. (shrink)

This article approaches the paradigm shift of datafication from the perspective of civil society. Looking at how individuals and groups engage with datafication, it complements the notion of “data politics” by exploring what we call the “contentious politics of data”. By contentious politics of data we indicate the bottom-up, transformative initiatives interfering with and/or hijacking dominant processes of datafication, contesting existing power relations or re-appropriating data practices and infrastructure for purposes distinct from the intended. Said contentious politics of data is (...) articulated in an array of practices of data activism taking a critical stance towards datafication. In data activism, data as mediators take a central role, both as part of an action repertoire or as objects of struggle in their own right. Leveraging social movement studies and science and technology studies, this theoretical essay argues that data activism can be mapped along two analytical dimensions: “data as stakes” vs. “data as repertoires”, and “individual practice vs. collective action”. Mapping action repertoires and tactics along these axes allows us to chart the potential emergence of a political data subject at the intersection of these two dimensions. This furthers our understanding of people’s engagement with data in relation to other forms of activism and existing work in social movement studies. It also helps us interpreting potential trajectories of contemporary social movements, as they increasingly interface with data, devices and platforms. (shrink)

The administrative reform of the datafied public administration places great emphasis on the classification, control, and prediction of citizen behavior and therefore has the potential to significantly impact citizen–state relations. There is a growing body of literature on data-oriented activism which aims to resist and counteract existing harmful data practices. However, little is known about the processes, policies, and political-economic structures that make datafication possible. There is a distinct research gap on situated and context-specific empirical research, which critically interrogates the (...) premises, interests, and agendas of data-driven public administration and how stakeholders can impact them. This paper therefore studies the conditions of participation in public administration datafication. It asks the overall research question of how citizens are problematized and included in policy and practitioner discourse in the datafication of public administration. The paper takes Norway as its case and applies Cardullo and Kitchin’s scaffold of smart citizen participation at the system level. It makes use of a unique empirical insight into the field, consisting of a survey, interviews, and an extensive document analysis. Unexpectedly, we find that citizens and civil society are rarely engaged in this administrative reform. Instead, we identify a paternalistic, top-down, technocratic approach where the context, values, and agendas of datafication are obscured from the citizen. (shrink)

This paper examines folk theories of algorithmic recommendations on Spotify in order to make visible the cultural specificities of data assemblages in the global South. The study was conducted in Costa Rica and draws on triangulated data from 30 interviews, 4 focus groups with 22 users, and the study of “rich pictures” made by individuals to graphically represent their understanding of algorithmic recommendations. We found two main folk theories: one that personifies Spotify and another one that envisions it as a (...) system full of resources. Whereas the first theory emphasizes local conceptions of social relations to make sense of algorithms, the second one stresses the role of algorithms in providing a global experience of music and technology. We analyze why people espouse either one of these theories and how these theories provide users with resources to enact different modalities of power and resistance in relation to recommendation algorithms. We argue that folk theories thus offer a productive way to broaden understanding of what agency means in relation to algorithms. (shrink)

As heritage-as-the-already-occurred folds into heritage-in-the-making practices, temporal and spatial fluidity is made more complex by digital mediation and particularly by Big Data. Such liveliness evokes ontological, epistemological and methodological challenges. Drawing on more-than-human theorizing, this article reframes the notion of data-bodies to advance data activist-oriented research in heritage. Focused primarily on women, it examines how their distributed agency and voice with respect to data practices and the makings of heritage could be amplified. I describe three methodological directions, influenced by feminist (...) work in critical data studies, which could be employed by researchers: attuning to and becoming with data, making data physical and changing narratives. From data-bodies to haunted data, performative data curation and mapping data-bodies, and attuning to data streams and re-voicing narratives, this article contributes to discussions of how to engage critically and creatively with the datafication of digital heritage practices, knowings and ontologies. (shrink)

This paper is concerned with everyday data practices, considering how people record data produced through self-monitoring. The analysis unpacks the relationships between taking a measure, and making and reviewing records. The paper is based on an interview study with people who monitor their blood pressure and/or body mass index/weight. Animated by discussions of ‘data power’ which are, in part, predicated on the flow and aggregation of data, we aim to extend important work concerning the everyday constitution of digital data. In (...) the paper, we adopt and develop the idea of curation as a theory of attention. We introduce the idea of discerning work to characterise the skilful judgements people make about which readings they record, how readings are presented, and about the records they retain and those they discard. We suggest self-monitoring produces partial data, both in the sense that it embodies these judgements, and also because monitoring might be conducted intermittently. We also extend previous analyses by exploring the broad set of materials, digital and analogue, networked and not networked, involved in record keeping to consider the different ways these contributed to regulating attention to self-monitoring. By paying attention to which data is recorded and the occasions when data is not recorded, as well as the ways data is recorded, the research provides specificity to the different ways in which self-monitoring data may or may not flow or contribute to big data sets. We argue that ultimately our analysis contributes to nuancing our understanding of ‘data power’. (shrink)