Disease surveillance systems

Recent advances in information and communication technologies have made the development and operation of complex disease surveillance systems technically feasible, and many systems have been proposed to interpret diverse data sources for health-related signals. Implementing these systems for daily use and efficiently interpreting their output, however, remains a technical challenge. This thesis presents a method for understanding disease surveillance systems structurally, examines four existing systems, and discusses the implications of developing such systems. The discussion is followed by two papers. The first paper describes the design of a national outbreak detection system for daily disease surveillance. It is currently in use at the Swedish Institute for Communicable Disease Control. The source code has been licenced under GNU v3 and is freely available. The second paper discusses methodological issues in computational epidemiology, and presents the lessons learned from a software development project in which a spatially explicit micro-meso-macro model for the entire Swedish population was built based on registry data

The Informed Gaze: On the Implications of ICT-Based Surveillance

Information and communication technologies are not value-neutral. I examine two domains, public health surveillance and sustainability, in five papers covering: ( i ) the design and development of a software package for computer-assisted outbreak detection; ( ii ) a workflow for using simulation models to provide policy advice and a list of challenges for its practice; ( iii ) an analysis of design documents from three smart home projects presenting intersecting visions of sustainability; ( iv) an analysis of EU-financed projects dealing with sustainability and ICT; ( v) an analysis of the consequences of design choices when creating surveillance technologies. My contributions include three empirical studies of surveillance discourses where I identify the forms of action that are privileged and the values that are embedded into them. In these discourses, the presence of ICT entails increased surveillance, privileging technological expertise, and prioritising centralised forms of knowledge

Peopling Europe through Data Practices: Introduction to the Special Issue

Politically, Europe has been unable to address itself to a constituted polity and people as more than an agglomeration of nation-states. From the resurgence of nationalisms to the crisis of the single currency and the unprecedented decision of a member state to leave the European Union (EU), core questions about the future of Europe have been rearticulated: Who are the people of Europe? Is there a European identity? What does it mean to say, “I am European?” Where does Europe begin and end? and Who can legitimately claim to be a part of a “European” people? The special issue (SI) seeks to contest dominant framings of the question “Who are the people of Europe?” as only a matter of government policies, electoral campaigns, or parliamentary debates. Instead, the contributions start from the assumption that answers to this question exist in data practices where people are addressed, framed, known, and governed as European. The central argument of this SI is that it is through data practices that the EU seeks to simultaneously constitute its population as a knowable, governable entity, and as a distinct form of peoplehood where common personhood is more important than differences

Changing Behaviour to Save Energy: ICT-Based Surveillance for a Low-Carbon Economy in the Seventh Framework Programme

In research and development of information and communication technologies for sustainability, there is a strong belief that human behaviour can be monitored at the individual level to generate different signals, and that these signals can be used to influence individuals to behave differently. We analyse Seventh Framework Programme policy documents published by the European Commission, and descriptions of research projects granted funding from it, to highlight the uncritical development and application of surveillance technologies to change human behaviour. We argue that EU-financed projects dealing with sustainability and information and communication technology use models of social change that have been widely criticised as unlikely to lead to substantial changes in resource consumption. Additionally, we show that these texts discuss only the potential positive effects of technological surveillance, but neither acknowledge nor require the handling of the potential negative effects of surveillance

Methods as Forces of Subjectivation: Experiments in the Remaking of Official Statistics

We develop the concept of methods as ‘forces of subjectivation’ in relation to experiments we have encountered in a study of government methods for generating official population statistics. These experiments problematise the subjects of traditional methods based on paper questionnaires and offer new digital technologies and data sources as possible solutions. We reflect on these experiments in relation to recent work on sociological and digital research methods as inventive and live. What this work identifies in relation to questions of research methods we take up to think about government methods in two ways. One concerns how government method experiments offered as solutions to problematic subjects, once put into action, change initial problem formulations and are inventive of new ones. Secondly, they are also inventive of their subjects who do not pre-exist but come into being through the agential capacities that methods configure. Both aspects of methods, we argue, are the result of the interactions and dynamics between human and technological actors, the outcomes of which cannot be settled in advance

Data Scientists: A New Faction of the Transnational Field of Statistics

Big Data analytics and related methods introduce new possibilities for the generation of official statistics, but also raise the question of whether national statisticians can continue to claim the legitimate authority to generate knowledge of the state. Drawing on a collaborative ethnography of European official statistics, we follow the politics of method where statisticians position themselves in relation to data scientists. We show that data scientists do not replace national statisticians but that both professional groups are relationally reconfigured in material-semiotic practices that cut across national organisations, such as experiments, demonstrations, job descriptions, and transnational negotiations. Through the tentative definition of the ‘iStatistician’, Big Data methodologies reconfigure the f

Citizen Data and Trust in Official Statistics

Many, if not most, big data are connected to the lives of citizens: their movements, opinions, and relations. Arguably big data and citizens are inseparable: from smartphones, meters, fridges and cars to internet platforms, the data of digital technologies is the data of citizens. In addition to raising political and ethical issues of privacy, confidentiality and data protection, this calls for rethinking relations to citizens in the production of data for statistics if they are to be trusted by citizens. We outline an approach that involves co-producing data, where citizens are engaged in all stages of statistical production, from the design of a data production platform to the interpretation and analysis of data. While raising issues such as data quality and reliability, we argue co-production can potentially mitigate problems associated with the re-purposing of big data. We argue that in a time of ‘alternative facts’, what constitutes legitimate knowledge and expertise are major political sites of contention and struggle and require going beyond defending existing practices towards inventing new ones. In this context, we argue that the future of official statistics not only depends on inventing new data sources and methods but also mobilising the possibilities of digital technologies to establish new relations with citizens

Citizen Data and Official Statistics: Background Document to a Collaborative Workshop

This working paper was written in preparation for a collaborative workshop organised for statisticians, social scientists, information and app designers and other participants inside and outside academia. The autumn 2017 workshop aimed to develop the main principles for a citizen data app for official statistics. Through this work we sought to conceive of a new regime of data collection in official statistics through different devices. How can we capture citizens’ meanings and intentions when they produce data? Can we develop ‘smart’ methods that do not rely on cooperating with, and data generated by, large tech companies, but by developing methods and data co-produced with citizens? Towards addressing these issues we developed four key concepts outlined in this document: experimentalism, citizen data, smart statistics and privacy by design. We introduced these concepts to facilitate shared understandings of their meaning, provide a background to discussions about them and the questions they raise for official statistics. Through then jointly working on the practical development of a citizen data app, the objective was to reflect on and reshape these concepts and to identify other concepts that might aid our understanding of the possibilities of citizen co-production of data for official statistics