Designing for Lived Health: Engaging the Sociotechnical Complexity of Care Work

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.PHDInformationUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttps://deepblue.lib.umich.edu/bitstream/2027.42/146030/1/eskaziu_1.pd

Virtual Clinical Trials: One Step Forward, Two Steps Back

Virtual clinical trials have entered the medical research landscape. Today’s clinical trials recruit subjects online, obtain informed consent online, send treatments such as medications or devices to the subjects’ homes, and require subjects to record their responses online. Virtual clinical trials could be a way to democratize clinical research and circumvent geographical limitations by allowing access to clinical research for people who live far from traditional medical research centers. But virtual clinical trials also depart dramatically from traditional medical research studies in ways that can harm individuals and the public at large. This article addresses the issues presented by virtual clinical trials with regard to: (1) recruitment methods; (2) informed consent; (3) confidentiality; (4) potential risks to the subjects; and (5) the safety and efficacy of treatments that are approved

Somatic narratives about illness : biometric visualization of diseased and disabled bodies in art and science projects

This article proposes investigating how the problem of chronic and deadly diseases and bodily injuries is explored in selected contemporary artistic projects based on biometric technologies and medical imaging. All of the projects that will be analysed use specific medical tools and methods (e.g., roentgenography or bio-tracking) to provide detailed, affective images of disability and illness. Nonetheless, these projects were created as pieces of art that combine visual and verbal elements: photographs, collages, and other illustrated stories (e.g., “biometric diaries” or open-source art). On the one hand, they show the “inner” and often invisible face of illness and suffering, but on the other hand they also raise questions related to algorithmic reductionism and politicization of such forms of representation of disease. This article will focus on artistic projects created by Diane Covert, Salvatore Iaconesi and Laurie Frick. It refers to the ‘ethos of health’ and the conception of ethopolitics (Nicolas Rose) to show the place in contemporary biopolitical society of illness (Thomas Lemke), which can be seen as an exceptional form of the body’s condition. Moreover, it considers the problem of the politicization of the biological body and affective experiences (Britta Timm Knudsen and Carsten Stage) and the category of untold histories explored by Joanne Garde-Hansen and Kristyn Gorton

Diabetes Self-Management Using Mobile Apps: An Empirical Investigation Based On App Reviews And Through Value Sensitive Design Perspective

Smartphones have penetrated our everyday lives. Novel technologies facilitate self-management of chronic diseases such as diabetes. However, not all the patients are motivated to use technologies to manage their chronic conditions. Patients depend on certain human values to self-manage their conditions and these values are not implicated in the technologies they use. In this research in progress study we draw on value sensitive design methodological and theoretical approach to investigate human responses to self-management technology. We collect app reviews for a diabetes app and schematically code the review. Our findings contribute to designing technologies and systems that account for the human values of the patients-users

Data, Data Everywhere, and Still Too Hard to Link: Insights from User Interactions with Diabetes Apps

For those with chronic conditions, such as Type 1 diabetes, smartphone apps offer the promise of an affordable, convenient, and personalized disease management tool. How- ever, despite significant academic research and commercial development in this area, diabetes apps still show low adoption rates and underwhelming clinical outcomes. Through user-interaction sessions with 16 people with Type 1 diabetes, we provide evidence that commonly used interfaces for diabetes self-management apps, while providing certain benefits, can fail to explicitly address the cognitive and emotional requirements of users. From analysis of these sessions with eight such user interface designs, we report on user requirements, as well as interface benefits, limitations, and then discuss the implications of these findings. Finally, with the goal of improving these apps, we identify 3 questions for designers, and review for each in turn: current shortcomings, relevant approaches, exposed challenges, and potential solutions