TY - JOUR

T1 - Torquing patients into data

T2 - enactments of care about, for and through medical data in algorithmic systems

AU - Avlona, Natalia Rozalia

AU - Shklovski, Irina

N1 - Publisher Copyright: © 2024 Informa UK Limited, trading as Taylor & Francis Group.

PY - 2024

Y1 - 2024

N2 - 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.

AB - 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.

KW - care about compliance

KW - Data care

KW - domain expertise

KW - medical data

UR - http://www.scopus.com/inward/record.url?scp=85187159978&partnerID=8YFLogxK

U2 - 10.1080/1369118X.2024.2320922

DO - 10.1080/1369118X.2024.2320922

M3 - Journal article

AN - SCOPUS:85187159978

JO - Information, Communication & Society

JF - Information, Communication & Society

SN - 1369-118X

ER -