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Shift in translations: Data work with patient-generated health data in clinical practice

Journal article
Authors Anna Sigridur Islind
Tomas Lindroth
Johan Lundin
Gunnar Steineck
Published in Health Informatics Journal
Volume 25
Issue 3
Pages 577-86
ISSN 14604582
Publication year 2019
Published at Institute of Clinical Sciences, Department of Oncology
Department of Applied Information Technology (GU)
Pages 577-86
Language en
Keywords clinical practice, data work, patient-generated health data, translation work
Subject categories Informatics


© The Author(s) 2019. This article reports on how the introduction of patient-generated health data affects the nurses’ and patients’ data work and unpacks how new forms of data collection trigger shifts in the work with data through translation work. The article is based on a 2.5-year case study examining data work of nurses and patients at a cancer rehabilitation clinic at a Swedish Hospital in which patient-generated health data are gathered by patients and then used outside and within clinical practice for decision-making. The article reports on how data are prepared and translated, that is, made useful by the nurses and patients. Using patient-generated health data alters the data work and how the translation of data is performed. The shift in work has three components: (1) a shift in question tactics, (2) a shift in decision-making, and (3) a shift in distribution. The data become mobile, and the data work becomes distributed when using patient-generated health data as an active part of care.

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