As healthcare is increasingly shaped by everyday interaction with data and technologies, there is a widespread interest in creating information systems that help people actively participate in managing their own health and wellness. To date, personal health technologies are largely designed as large-scale ;;patient-centered” systems, grounded in a biomedical model of care and clinical processes and/or commercial ;;self-care” technologies, that seek to facilitate individual behavior change through activities like fitness tracking. Through investigating the lived experience of chronic illness—multiple, messy, and often the site of uncomfortable dependencies—my thesis empirically and theoretically engages the limitations of such popular design narratives to address sociotechnical complexities in personal health management. My findings, drawn from people’s care practices across three distinct field sites, argue for a need to contend with lived health: the ways in which everyday health and wellness activities are connected to wider ecologies of care that include the emotional labor of family and friends, entanglements of data, machineries and bodies, localized networks of resources and expertise, and contested forms of information work. My thesis contributes to the literature of Information and Computer Science in the fields of Human-Computer Interaction and Computer-Supported Cooperative Work by offering an alternative analytical lens for designing health systems that support a wider range of people’s social and emotional needs.
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Designing for Lived Health: Engaging the Sociotechnical Complexity of Care Work
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