In Data Paradoxes: The Politics of Intensified Data Sourcing in Contemporary Healthcare, Klaus Hoeyer examines the paradoxes surrounding healthcare data, looking at Denmark as a case study, arguing that increased data collection does not always result in more efficient services. The book’s extensive interdisciplinary research results in a rich guide for how we can think about our relationship to the data produced about us, writes Sam DiBella.
Data Paradoxes: The Politics of Intensified Data Sourcing in Contemporary Healthcare. Klaus Hoeyer. MIT Press. 2023.
We usually encounter paradoxes as riddles that challenge us to change our perspective. In Data Paradoxes: The Politics of Intensified Data Sourcing in Contemporary Healthcare, anthropologist Klaus Hoeyer shows how medical data create their own contradictions that dissolve if you look at them the right way: that is, if you identify who finds that documentation useful. Contemporary data often serve institutional, or government, purposes while alienating the workers who make it. The resulting generative, extensive research goes after a whole string of paradoxes produced by data practices: citizens both empowered and disempowered by their data; meaningless busy work promised to produce meaning; and flawed data required to produce any claim under evidence-based medicine.
In this open-access ethnographic study of the Danish healthcare system, “intensified data sourcing” changes the politics of healthcare and the experiences of its subjects – workers and patients alike.
In this open-access ethnographic study of the Danish healthcare system, “intensified data sourcing” changes the politics of healthcare and the experiences of its subjects – workers and patients alike. Denmark created its data paradoxes by combining American software platforms with a robust national identification and healthcare system. The result is the envy of policymakers across the globe and far outstrips the tech potential of “fragmented” American healthcare. Hoeyer warns, however, that these same paradoxesare likely to be recreated in countries who pursue similar healthcare infrastructure. The developers of Danish data tools, for example, promised to reduce work even as they burdened healthcare staff with endless documentation.
Critical data studies of the past decade have often used extractive metaphors to describe their subject. Data are oil, gold, exhaust or labour. All suggest the fear that our information – the wealth of our age – is enriching corporations while creating precarity for ordinary people. From a background in medical anthropology, Hoeyer wants to emphasise how data change our perceptions and experience of the world: he proposes that data is a drug that we and our healthcare institutions simply can’t get enough of. Noting this addiction to data is not novel. The influential edited volume ‘Raw Data’ Is an Oxymoron, for example, explored similar consequences of “big data” ten years ago.
The fear that our information – the wealth of our age – is enriching corporations while creating precarity for ordinary people.
Data Paradoxes recalls other recent attempts to unravel sites where technology licenses its users to channel power through rhetoric as much as prowess, such as Christo Sims’s Disruptive Fixation or Morgan Ames’s Charisma Machine. In those books, looking at what the promoters of a technology promise compared to its effects in practice reveals both politics and ideology. But the way Hoeyer sits with and tries to explain the contradictory drives of the healthcare workers and policymakers he interviewed feels different. Hoeyer tries to synthesise years of disparate investigations conducted by him and other researchers at the University of Copenhagen Center for Medical Science and Technology Studies into a single case study of Danish healthcare.
Who, now, benefits from the demon of data work? Hoeyer’s discussion of healthcare workers’ alienation from data work starts to get at an answer: data collected often serves the interests of the institution or government collecting it, and not the worker. Since data workers do not benefit from the cleaning or analysis they do, a healthcare system promoted for its integration of social services is paradoxically experienced as a disintegration of interest. No one wants to make a spreadsheet they’ll never personally use.
There are a few places where Hoeyer does not quite connect his own dots. The chapter on “data promises” discusses the circulation of unsubstantiated reports commissioned from consulting companies like Deloitte and McKinsey to hype the effects of healthcare data integration. He notes how policymakers will, on the one hand, call for the collection of more and better health data while, on the other, overlook the wretched data that shore up their claims or that they themselves produce:
“[T]he coexistence of two truths can be productive for policymakers because it provides an aura of legitimacy and allows postponement of action. By claiming that it is better to wait until more data have been accumulated, data promises generate a form of temporal disruption of public accountability. In this context, data-as-promise is—politically—a more powerful resource than data-as-evidence,” (55).
Later in that chapter, Hoeyer wonders, “How come [lobbyists] do not fear data validity problems?” (113). The consultants he interviews know that the data they collect are garbage, but they don’t seem to mind. Yet, Hoeyer answers his own question elsewhere: consultants don’t fear data validity problems because they benefit from them. Their methods of strategic deferral produce a void that they, and they alone, can claim to fill with their expertise. This is just one example that cropped up as I read. Even though his reasoning at each step is sound, I sometimes felt like Hoeyer was talking past himself.
[Consultants’] methods of strategic deferral produce a void that they, and they alone, can claim to fill with their expertise.
Such disconnects in what is otherwise a soundly reasoned book might be explained by Data Paradoxes’ titanic disciplinary scope: philosophy, medical anthropology, history, science and technology studies, organisational studies, epidemiology, and healthcare policy all get their moment. As a result, and as a case study, Data Paradoxes is unusual. Hoeyer explains late in the book,
“My analytical ambition has constantly been a synthesis of the drivers for, and the implications of, intensified data sourcing rather than a detailed study of any individual data uses. […] I wanted to describe the interplay of policy, practice, and experience. The book was therefore never to be a nuanced ethnography of a particular patient group, clinic, research, laboratory, governance office, or country.” (224)
Scholars of Danish, or European, healthcare will find descriptions of the design, implementation of Denmark’s healthcare data portal, sundhed.dk, but with an emphasis on how it is perceived and experienced rather than technical details. Hoeyer is more interested in using the results of an entire research programme on Danish healthcare data to give a sweeping view of the state of medical data.
This approach also means that Data Paradoxes is not read, or cited, like most other ethnographies. Hoeyer cites extensively and only elaborates on a citation’s connection and context where explicitly needed. Given all the interdisciplinary fields that he draws on, it would be difficult for the reader to parse the supporting statements unless they are up to date on all the relevant fields. That is not a criticism; it just means Data Paradoxes should be read in a particular way. Several of the chapters—those on data living, work, and pandemics—focus more on fieldwork details. Together, the book’s chapters don’t build up on each other to propose a single theory to account for all of them. Instead, each is Hoeyer’s exploration of a particular paradox. The result is better, much like the data paradoxes themselves, as a guide for thought and inquiry than as explanation on their own.
As our ‘data relations’ to an economy of data become naturalised over time, our perception of data changes.
Technological utopianism, still prevalent today, maintains that “progress” is inevitable and that a technology’s inherent qualities are immune to change or context. Data Paradoxes joins a long lineage of studies of technology that explore why implementation matters, if in a different way than its peers. As our “data relations” to an economy of data become naturalised over time, our perception of data changes. I found the sections where Hoeyer describes his own emotional reactions to his data some of the most compelling. Our bodies are forced to confess themselves to doctors and instruments only to be sliced into data points and returned to us as alienating, even frightening, descriptions. Data Paradoxes shows, however, that attempts to rationalise healthcare in such a system will only continue to produce new paradoxes in response.
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