Book Review: “Raw Data” is an Oxymoron

Book review of ’"Raw Data" is an Oxymoron’, by Lisa Gitelman (ed.), MIT Press

Book Review: Big Data: A Revolution That Will Transform How We Live, Work, and Think

Book review of "Big Data: A Revolution That Will Transform How We Live, Work and Think", by Kenneth Cukier and Viktor Mayer-Schonberger, John Murra

Patient data as medical facts: social media practices as a foundation for medical knowledge creation

This paper investigates a web-based, medical research network that relies on patient self-reporting to collect and analyze data on the health status of patients, mostly suffering from severe conditions. The network organizes patient participation in ways that break with the strong expert culture of medical research. Patient data entry is largely unsupervised. It relies on a data architecture that encodes medical knowledge and medical categories, yet remains open to capturing details of patient life that have as a rule remained outside the purview of medical research. The network thus casts the pursuit of medical knowledge in a web-based context, marked by the pivotal importance of patient experience captured in the form of patient data. The originality of the network owes much to the innovative amalgamation of networking and computational functionalities built into a potent social media platform. The arrangements the network epitomizes could be seen as a harbinger of new models of organizing medical knowledge creation and medical work in the digital age, and a complement or alternative to established models of medical research

Exhibition: Live by data, die by data

PublishedThe Big Bang Data exhibition at Somerset House in London pushes the idea that today's data explosion is catapulting us into a future in which everything is transformed; a world that is irreconcilable with the institutions and societies of the past. Beyond the considerable technical challenges of the contemporary data deluge, the different roles and situations in which data are produced and consumed are far from being well understood — and their consequences are even harder to predict. Big Bang Data attempts to showcase these uncertainties by recapitulating public discussions about big data through the work of artists, designers, journalists and activists

Governing social media: organising information production and sociality through open, distributed and data-based systems

This thesis explores the management of social media networks through a specific interpretive lens. It views social media as networks organised for information production and managed through the development of complex data structures and underpinning technological solutions. The development of social media networks – chiefly characterised by the open and distributed participation of many diverse individuals through the intermediation of specific technological solutions – seems to give shape to new organisational forms and data management practices, impacting in many domains. Despite vivid interest in these participatory organisational forms, we do not fully understand how social media technology is leveraged to organise member communities, standardising processes and structuring interaction. In this research I build on the case of PatientsLikeMe, a prominent and innovative social media network constructing medical scientific knowledge through the data-based contributions of its open and distributed member base. By drawing on the findings of an intensive, participatory case research, the thesis makes a contribution on several levels. The thesis demonstrates that the management of social media networks is characterised by the need to achieve steady, reliable and comprehensive production of information and associated data collection by means of complex data architectures and user reporting. I illustrate these conditions by highlighting the challenges that characterise the development of a system able to engage productively with the member base and by describing the mechanisms and techniques through which the organisation seeks to address them. Data and data structures figure prominently throughout the research as organisational devices of critical importance for the management of social media networks. The thesis also indicates and comments on the implications of these innovative modes of organising knowledge production. It finds that social media support considerable innovation in the arrangements by which scientific knowledge can be produced, with a consistent inclusion of once marginalised actors in data management practices, and elaborates on effects on the relationship with research institutions and professions. At the same time, the thesis shows that social media technology, because of the challenges and strategies associated with information production, ambiguously supports the project of a wider inclusion that it seems to afford at first sight. Finally, the thesis claims that developing social media gives rise to specific techniques of construction and governance of the social, and the associated kinds of sociality where socialisation, computation and the production of knowledge objects are inextricably enmeshed

E-government and organizational change: reappraising the role of ICT and bureaucracy in public service delivery

There is a substantial literature on e-government that discusses information and communication technology (ICT) as an instrument for reducing the role of bureaucracy in government organizations. The purpose of this paper is to offer a critical discussion of this literature and to provide a complementary argument, which favors the use of ICT in the public sector to support the operations of bureaucratic organizations. Based on the findings of a case study – of the Venice municipality in Italy – the paper discusses how ICT can be used to support rather than eliminate bureaucracy. Using the concepts of e-bureaucracy and functional simplification and closure, the paper proposes evidence and support for the argument that bureaucracy should be preserved and enhanced where e-government policies are concerned. Functional simplification and closure are very valuable concepts for explaining why this should be a viable approach

Digital orphans: Data closure and openness in patient- powered networks

This is the author accepted manuscript. The final version is available from Palgrave Macmillan via the DOI in this record.In this paper, we discuss an issue linked to data-sharing regimes in patient-powered, social-media-based networks, namely that most of the data that patient users share are not used to research scientific issues or the patient voice. This is not a trivial issue, as participation in these networks is linked to openness in data sharing, which would benefits fellow patients and contributes to the public good more generally. Patient-powered research networks are often framed as disrupting research agendas and the industry. However, when data that patients share are not accessible for research, their epistemic potential is denied. The problem is linked to the business models of the organisations managing these networks: models centred on controlling patient data tend to close networks with regard to data use. The constraint on research is at odds with the ideals of a sharing, open and supportive epistemic community that networks’ own narratives evoke. This kind of failure can create peculiar scenarios, such as the emergence of the ‘digital orphans’ of Internet research. By pointing out the issue of data use, this paper informs the discussion about the capacity of patient-powered networks to support research participation and the patient voice.We are indebted to the anonymous reviewers and the editor, who with their supportive and constructive comments helped us to better clarify and highlight the argument of the article. We would like to also thank friends and colleagues who have offered valuable comments and suggestions on early drafts of this paper. We would like to especially thank Barbara Prainsack, Sabina Leonelli, Alena Buyx, and David Teira. This research is funded by the European Research Council (ERC) under the European Union’s Seventh Framework Programme (FP7/2007–2013)/ERC grant agreement number 335925, and the German Federal Ministry of Education and Research (grant number 01GP1311

Governing PatientsLikeMe: information production and research through an open, distributed, and data-based social media network

Many organizations develop social media networks with the aim of engaging a wide range of social groups in the production of information that fuels their processes. This effort appears to crucially depend on complex data structures that allow the organization to connect and collect data from a myriad of local contexts and actors. One such organization, PatientsLikeMe, is developing a platform with the aim of connecting patients with one another while collecting self-reported medical data, which it uses for scientific and commercial medical research. Here the question of how technology and the underlying data structures shape the kind of information and medical evidence that can be produced through social media-based arrangements comes powerfully to the fore. In this observational case study, I introduce the concepts of information cultivation and social denomination to explicate how the development of such a data collection architecture requires a continuous exercise of balancing between the conflicting demands of patient engagement, necessary for collecting data in scale, and data semantic context, necessary for effective capture of health phenomena in informative and specific data. The study extends the understanding of the context-embeddedness of information phenomena and discusses some of the social consequences of social media models for knowledge making