Lived Data: Tinkering With Bodies, Code, and Care Work

Abstract

Human–computer interaction research on personal informatics in health care has focused on systems that aim to support patient empowerment and enable better health outcomes with data monitoring and tracking. Through examining the lived experience of personal data used to manage chronic illness, we show how such technology design is also the site of radical dependencies, collaborative care arrangements, and wider sociopolitical concerns tied to new forms of technical labor and shifts in medical expertise. Drawing from ethnographic research with open source, do-it-yourself collectives engaged in opening up corporate-controlled type 1 diabetes devices and data, we propose the analytical lens of lived data. Lived data emphasize data as an integral way of living, enacted through a multiplicity of things, relations, and practices, from bodies and needles, social media support groups, and legal processes to writing code, making visualizations, and hacking devices. Building on critical and feminist scholarship of human–machine relations, we articulate the work that goes into producing and living personal data, the physical and emotional costs of data tracking, and the consequences of do-it-yourself as a form of individual empowerment in health and wellness.

Additional information

Funding

This work was supported in part by the National Science Foundation under awards 1513596 and 1321065 and the University of Michigan Department of Pediatrics Charles Woodson Clinical Research Fund.

Notes on contributors

Elizabeth Kaziunas

Elizabeth Kaziunas ([email protected], www.elizabethkaziunas.com) is researcher of human–computer interaction (HCI), computer-supported cooperative work (CSCW), and health informatics with an interest in personal health and wellness technologies; she is a Ph.D. candidate in the School of Information at the University of Michigan.

Silvia Lindtner

Silvia Lindtner ([email protected], www.silvialindtner.com) is a researcher of do-it-yourself maker culture, with a particular focus on emerging cultures of technology production and use; she is an Assistant Professor of Information in the School of Information and Assistant Professor of Art and Design at the Penny W. Stamps School of Art and Design at the University of Michigan.

Mark S. Ackerman

Mark S. Ackerman ([email protected], www.socialworldsresearch.org) is a researcher of CSCW, HCI, and social computing; he is the George Herbert Mead Collegiate Professor of Human–Computer Interaction, Professor of Information in the School of Information, and Professor of Electrical Engineering and Computer Science in the College of Engineering at the University of Michigan.

Joyce M. Lee

Joyce M. Lee ([email protected], www.doctorasdesigner.com) is a physician, designer, and researcher with an interest in patient-centered design and integration of the maker movement into health care; she is the Robert P. Kelch, MD, Research Professor of Pediatrics at the University of Michigan’s Medical School.