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Torquing patients into data: enactments of care about, for and through medical data in algorithmic systems
Univ Copenhagen, Denmark.
Linköping University, Department of Thematic Studies, The Department of Gender Studies. Linköping University, Faculty of Arts and Sciences. Univ Copenhagen, Denmark.
2024 (English)In: Information, Communication and Society, ISSN 1369-118X, E-ISSN 1468-4462Article in journal (Refereed) Epub ahead of print
Abstract [en]

The increasing digitisation of healthcare services has transformed healthcare provision into a data-centric enterprise. Thinking with Joan Tronto and her notion of care, we study medical data practices in the context of a health-tech company developing an algorithmically driven platform to match patients and their physicians with clinical trials. What does it mean to pose the patient in the centre in such a context? In this paper, we show how the enactments of patient-centrism translate to multidimensional enactments of data care for a diversity of domain experts handling medical data, informed by the values and backgrounds of each 'data handler' situated within the concerns of their domain expertise. Where data experts engage solely with the patients' data to facilitate data creation for the platform's algorithmic system, the quest for data quality depends on the preceding practices of care and affective labour about and for the patients. We show how patients get help to torque their medical records and histories into data to fit the demands of the system to ensure access to experimental treatments and clinical trials. We demonstrate how patient-centrism manifests as care for data quality, shaped throughout by differentiated concerns for regulatory compliance. Finally, we argue that regulatory compliance constitutes a care practice across data work that is diversified in its enactments by the experts' domain concerns and backgrounds.

Place, publisher, year, edition, pages
ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD , 2024.
Keywords [en]
Data care; medical data; domain expertise; care about compliance
National Category
Media Studies
Identifiers
URN: urn:nbn:se:liu:diva-201663DOI: 10.1080/1369118X.2024.2320922ISI: 001176735900001OAI: oai:DiVA.org:liu-201663DiVA, id: diva2:1845267
Note

Funding Agencies|HORIZON EUROPE Marie Sklodowska-Curie Actions [955990]

Available from: 2024-03-18 Created: 2024-03-18 Last updated: 2024-03-18

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CiteExportLink to record
Permanent link

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Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
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