Interpretation as luxury: Heart patients living with data doubt, hope, and anxiety

Big Data and Society 7 (1) (2020)
  Copy   BIBTEX

Abstract

Personal health technologies such as apps and wearables that generate health and behavior data close to the individual patient are envisioned to enable personalized healthcare - and self-care. And yet, they are consumer devices. Proponents of these devices presuppose that measuring will be helpful, and that data will be meaningful. However, a growing body of research suggests that self-tracking data does not necessarily make sense to users. Drawing together data studies and digital health research, we aim to further research on data ambivalence, a term we use to refer to the ambiguities and uncertainties people experience when interpreting their own data, as well as the critical obligation towards cultivating ethically sound uses and responses to such data in context. We develop the relationship between data, interpretation, and context as a central theoretical and practical problem in the datafication of healthcare. We then show how interpretation and context matter for data ambivalence through an empirical study of heart patients with an implanted advanced pacemaker who were offered a Fitbit wristband for self-tracking as part of a research project. We argue that the hope, anxiety, and doubt connected to the promise and accuracy of data are tempered by the context and purpose of self-tracking, and by individual circumstances. Finally, we link the findings on context-sensitivity in data interpretation to questions about response-ability in cloud-based care infrastructures. We discuss the ethical dilemmas associated with the use of commercial wellness-technologies in healthcare, and with researching such emerging practices.

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 92,197

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

How should we think about clinical data ownership?Angela Ballantyne - 2020 - Journal of Medical Ethics 46 (5):289-294.
Mental models in data interpretation.Clark A. Chinn & William F. Brewer - 1996 - Philosophy of Science 63 (3):219.
Mental Models in Data Interpretation.Clark A. Chinn & William F. Brewer - 1996 - Philosophy of Science 63 (5):S211-S219.

Analytics

Added to PP
2020-11-24

Downloads
15 (#950,500)

6 months
7 (#437,422)

Historical graph of downloads
How can I increase my downloads?