Data work: Meaning-making in the era of data-rich medicine

Fiske A, Prainsack B, Buyx A (2019)

Publication Type: Journal article, Review article

Publication year: 2019

Journal

Journal of Medical Internet Research Journal of Medical Internet Research / Gunther Eysenbach

Book Volume: 21

Article Number: e11672

Journal Issue: 7

DOI: 10.2196/11672

Abstract

In the era of data-rich medicine, an increasing number of domains of people's lives are datafied and rendered usable for health care purposes. Yet, deriving insights for clinical practice and individual life choices and deciding what data or information should be used for this purpose pose difficult challenges that require tremendous time, resources, and skill. Thus, big data not only promises new clinical insights but also generates new-and heretofore largely unarticulated-forms of work for patients, families, and health care providers alike. Building on science studies, medical informatics, Anselm Strauss and colleagues' concept of patient work, and subsequent elaborations of articulation work, in this article, we analyze the forms of work engendered by the need to make data and information actionable for the treatment decisions and lives of individual patients. We outline three areas of data work, which we characterize as the work of supporting digital data practices, the work of interpretation and contextualization, and the work of inclusion and interaction. This is a first step toward naming and making visible these forms of work in order that they can be adequately seen, rewarded, and assessed in the future. We argue that making data work visible is also necessary to ensure that the insights of big and diverse datasets can be applied in meaningful and equitable ways for better health care.

Involved external institutions

Technische Universität München (TUM) DE Germany (DE) Universität Wien / University of Vienna AT Austria (AT)

How to cite

APA:

Fiske, A., Prainsack, B., & Buyx, A. (2019). Data work: Meaning-making in the era of data-rich medicine. Journal of Medical Internet Research, 21(7). https://doi.org/10.2196/11672

MLA:

Fiske, Amelia, Barbara Prainsack, and Alena Buyx. "Data work: Meaning-making in the era of data-rich medicine." Journal of Medical Internet Research 21.7 (2019).

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