Caring and Repairing Data Lives

Abstracts

What gets lost in translation? Accountable care in data-driven nursing homes in Denmark

by Mie WInther Christensen and Nete Schwennesen, Roskilde Universitet 

Practices of storing and archiving data about care, has for long been part of professional care work (Weber 1947). However, while records previously were kept in close cabinets, and were seen as means to protect professional judgements and decisions from political involvement, in the contemporary welfare state, data about care has become a means to control and surveil professional care work and a regulatory tool to ensure accountability and quality of care. In STS research it is well known that datafication processes both illuminates and hide aspects of the phenomenon they are supposed to capture (Kitchin 2014; Barad 2007) and involves processes of translation were sudden practices are made visible and made to matter, whereas other practices are made invisible (Kan 2015; Flyverbom 2019). Hence, although data may seem objective, they are never unbiased, neutral or raw and entails choices, judgements and epistemic notions of what care is (Schwennesen 2019). Building on ethnographic fieldwork at a nursing home in Denmark, this paper investigates the forms of care that are made accountable in such processes of translation, and asks; what are the forms of care that are valued and made visible in translational process, and what are the forms of care that escapes datafication?

Keywords: care, datafication, translation, accountability, nursing homes 

Histories and Critiques of Big Data – from Autonomy to Care

by Birte de Gruisbourne, Paderborn University / Media Studies; with Amira Möding

In our paper we recover the intellectual history of data and data creation through large companies in the tech industry, we show how ‘data capitalism’ has impacted practices of data creation, and even the representative character of data, and end with a critique of responsibility, agency and autonomy, as they are currently promoted by states or the industry.

By deriving this critique from a history of the emergence of data capitalism we provide a genealogical critique that denaturalises current ideas of ‘data,’ how data emerge from individuals and how individuals should act in a ‘datafied’ world (Geuss 1999; Couldry, Mejias, 2019; Zuboff 2020). We point to conceptions of care and critiques of autonomy as an important alternative perspective through which data can be analysed (Cavarero 2016; Redecker 2016). An analysis from this perspective shows how data creation especially in data capitalism is a relational practice that cannot be mitigated by calls to an autonomous citizen subject responsible for how data are created from their online movements. Instead we emphasise how data always already emerge from vast infrastructures, networks and through relations within both and are never created by one individual. Hence, data are, we argue, better understood in terms of care and maintenance. We show how practices of data-extraction and accumulation from the beginning change the character of data and how this different understanding must change how we see subjects in relation to ‘their’ data. These structures, we argue, can be better grasped and criticised through the analytical lens of care.

An Ethics of Digital Care

by Rob Kitchin, Maynooth University

This paper advances a normative framing for care and repair with respect to data lives. It does so with respect to self-care and collective care, on the one hand drawing on feminist notions of the ‘ethics of care’ and on the other ideas of social justice. It argues for an ethics of data sovereignty that is care orientated with respect to how data are generated, circulated and used, and advances the notion of slow computing as a strategic means to exert individual and collective digital care, practice data ethics, and (re)claim data justice.) 

Data maintenance work in a Finnish healthcare and social service organization

by Iiris Lehto, University of Eastern Finland

In Finland public healthcare and welfare services have gone through a remarkable reform as from January 2023 the responsibility for organizing services was transferred from municipalities to wellbeing services counties. Because of this transfer, much work has been done to harmonize information and reporting systems.  Simultaneously national harmonization of information structures has been underway.  In social services this means a shift to structured recording of the client data. 

By the turn of the year, the counties were updating systems simultaneously and this caused for example delays and interruptions in the information systems and the journey of data from the system to the user.  The staff, data and information systems have to be adjusted to changes. This adjustment and maintenance work is being carried out by workers in public sector welfare organizations as well as by private sector system providers. 

In this presentation, I understand maintenance work as a form of care work. The workers are caring for e.g., the information systems and data. I examine maintenance and adjustment work required by the transition to wellbeing services counties from the perspective of a multi-professional Knowledge Team and social welfare experts in one county. The all-female team provides guidance to fieldworkers, resolve service requests, and reports to authorities.  In my analysis, I focus especially on how maintenance work is enacted through struggling with constantly changing guidelines and malfunctioning data systems. My data consists of fieldnotes from the team's weekly meetings and expert interviews from 2022 and 2023.

Who cares about my gender? Analysing practices of data care and repair in Wikidata

by Beatrice Melis, University of Pisa and Daniele Metilli, University College London; with Chiara Paolini and Marta Fioravanti

The ongoing datafication of society is having a significant impact on our daily lives (Kitchin, 2021; Pink et al., 2017). Data about us is being generated, shared, and reused at a staggering pace, often with little regard for the risks and ethical questions that such processes entail (Boyd & Crawford, 2012). Handling personal data is a “matter of care” that requires careful ethical consideration (Puig de la Bellacasa, 2017), especially when dealing with sensitive data such as gender, ethnicity, or sexuality. One project that has become central to the current data landscape is Wikidata, the free collaborative knowledge base (Vrandečić & Krötzsch, 2014). In the Wikidata Gender Diversity (WiGeDi; Metilli & Paolini, in press) project, funded through the Wikimedia Research Fund programme, we are looking at how the Wikidata community has approached the complex issue of modelling and populating gender data. We are studying this issue through the lens of critical data studies (Kitchin & Lauriault, 2014; Iliadis & Russo, 2016), adopting a feminist, intersectional, and queer perspective that views gender as a social construct (Butler, 1999). In this paper, we show how the Wikidata community has evolved its shared understanding of gender from an initial narrow binary perspective, incurring several missteps such as automated population of gender data, but later attempting to remedy them through practices of data care and repair. We show how resistance to biases and lack of care has brought important change to Wikidata policies and technical infrastructures (Ramakrishnan et al., 2021), leading to a more careful management of gender data.

I Dreamt of Something Lost: Examining the Affect of Personal Data Through Creative Practice

by Florence Walker, University of Bergen

On the contemporary internet, data has become a form of afterlife. Our emails, messages, pictures, and profiles invariably outlast us and linger after death (Sutherland 2021). There is a growing body of literature on ‘digital remains’: scholars such as Timothy Recuber, Scott H. Church, and Lisa Klastrup have theorised Facebook memorialisation in extensive detail, for instance (2012; 2013; 2015).
How should these artefacts – and, more crucially, the affect they provoke – be cared for? The phenomenological, political, and ethical stakes of digital remains have been extensively theorised. However, there are few – if any – works that explore the issue in a creative capacity. I seek to answer the question posed by Sun-ha Hong as to ‘how we might begin to more explicitly discuss the moral and experiential, as well as technical and epistemic, stakes in our relationships with new technologies’ (2016, emphasis mine).

Following a year-long project with the University of Bergen, my paper will explore how creative practice might expose, provoke, or activate these submerged affects. In particular, the interactive narrative provides a unique opportunity to explore the experiential stakes of data – being itself a constructed experience of play. A key element here is the use of dreams as an analogue for data; being at once ephemeral and persistent, social and individual, universal and contingent (Ringmar 2016). By encouraging the reader to reflect on these issues, this work can be considered in of itself an act of care.

Bibliography

Church, Scott H. 2013. ‘Digital Gravescapes: Digital Memorializing on Facebook’. The Information Society 29 (3): 184–89. https://doi.org/10.1080/01972243.2013.777309.

Klastrup, Lisbeth. 2015. ‘“I Didn’t Know Her, But…”: Parasocial Mourning of Mediated Deaths on Facebook RIP Pages’. New Review of Hypermedia and Multimedia 21 (1–2): 146–64. https://doi.org/10.1080/13614568.2014.983564.

Recuber, Timothy. 2012. ‘The Prosumption of Commemoration: Disaste) 

Repairing digital nature: How healing digital architectures imagine and produce care as “being-in-nature” 

by Dara Ivanova, Radboud University Nijmegen

Repairing (Digital) Nature: This paper focuses attention on how the concept of nature is being re-defined by digitalization practices in the context of healthcare technologies. I present and analyze two cases of VR applications for healthcare: VR for giving birth “naturally” and VR for long-covid patients recovery. Both cases illuminate the advent of what I call ‘healing digital architectures’ – immersive digital experiences, supplied via VR technology and promising therapeutic gains (Pickersgil 2019) through the application of ‘nature’.  

I bring together discussion on digital geographies (Kitchin and Leszczynski 2019), materialities of care (Buse et al. 2018) and post-place care (Ivanova 2020) to argue that care is displaced to the realm of virtual experiences, almost entirely imagined and produced to depict nature. This development showcases two types of repair questions: repairing healthcare systems by substituting ‘real’ nature, and repairing ‘real’ nature to fit the mould of healthcare in the neoliberal economy of the anthropocene (where VR nature is produced as safe, tame, motherly, and crucially - affordable).  

The key elements in this analysis are the notion of healing digital architecture and “being-in-nature” as a repair tool for illness. The paper explores the entanglements of these elements by asking how do digital architectures imagine and produce care as going back to nature? In the case of VR for birth, the technology is being presented as “going back to the natural way of birthing”. This is an attempt to repair care, yet the practices around this repair raise new issues of maintenance.  

Caring for robots as caring for each other: the better story of Kogonada’s ‘After Yang’

by James White, Lund University

Speaking on the topic of ‘Instructions for the Age of Emergency’ in 2018, speculative fiction author Monica Byrne linked the apocalypse anxiety of white men with their realisation that women and people of colour, as well as the servile robots and AI that are typically gendered as female, are independently sentient and increasingly able to act in unanticipated ways. “It matters that still”, she said, “the vast majority of science fiction narratives that appear in popular culture are imagined by, written by, directed by, and funded by white men who interpret the crumbling of their world as the crumbling of the world” (Byrne, 2018).

In this paper, I diffract Byrne’s analysis of apocalypse anxiety through the better story depicted in the 2021 film ‘After Yang’. Directed by Korean film maker Kogonada, ‘After Yang’ tells of how a white Irish man, Jake (played by Colin Farrell), investigates the breakdown of his daughter’s social robot, perhaps in order to restore the practised distance he has maintained from his family. But as he becomes more enrolled into the data and memories that comprise Yang’s past, Jake finds himself performing a care and repair role within his family, something that ultimately gives him a purpose that he was unable to find in his work. My point is not to critique Byrne’s analysis. Rather, I aim to show how, in a moment of crumbling, we might find a different form of masculinity in hopeful acts of caring for our relationships and for the sentience of others.

Educational data infrastructures: Regulation and Care

by Irina Zakharova, University of Bremen, ZeMKI

Many aspects of public education rely on public and private data infrastructures. These data infrastructures are developed and used to ‘solve’ certain problems and often promote that their providers care for others. Research across various domains of digital welfare and digital governance has shown that such caring promises can have opposite, regulatory implications or write out complexities and contingencies of relations between the state and the citizens – i.e. schools, teachers, and learners in context of public education (Bradbury, 2019; Broomfield & Reutter, 2022; Redden et al., 2020; van Schie et al., 2020).

Against this backdrop it is crucial to examine the role of care in reconfiguring such relations and the political implications of care-ful or care-less connections through data infrastructures. I therefore ask, which actors – collective, organisational, and technological ones – constitute educational data infrastructures and who do they care about and in what ways. Conceptually, I draw on the infrastructure studies (Bowker & Star, 1999) and feminist science and technology studies (Lindén & Lydahl, 2021; Tronto, 2016), to explore who are the actors constituting educational data infrastructures. Empirically, I analyse and map German data infrastructures relevant for K-12 school education. Particularly, I apply qualitative content analysis to regulations and publicly available documentation about public and private educational data infrastructures, focusing on the kinds of actors owning, maintaining, accessing, and using such infrastructures, what actors do these infrastructures target, what kinds of ‘problems’ they aim to solve, and how do these (presumable) technological ‘solutions’ care about the targeted actors.

Organizers

Charlotte Högberg and James Merricks White, Lund University