Abstract: With the datafication of health, the uptake of self-tracking technologies, and the growth of Artificial Intelligence, the use of patient generated health data (PGHD) and data-intensive technologies are expected to support numerous benefits, such as clinical decision support, patient-centered care, and patient empowerment. However, for these benefits to be achieved, it is critical to understand how the increased use of PGHD influences individuals’ health behaviors, and the broader organizational, technological, and societal factors that shape their data work and technology use. In this talk, I discuss my research on data work in the fertility context, which is complex, personalized, and loaded with stigma and social taboos—characteristics that create difficulties for individuals who menstruate to access care. I present the results of three studies, describing the challenges of tracking and engaging with fertility data, how current fertility technologies shape individuals’ data work, and how their data work is embedded in larger ecologies of care. Based on these results, I discuss how individuals’ data work for health is strongly entangled with their emotional experiences and technology often falls short of adequately supporting people’s diverse data needs and changing life goals. I conclude by presenting opportunities for designing data-driven consumer health technologies that better support the data work of individuals in ways that help us to leverage the benefits of data to healthcare.
Bio: Mayara Costa Figueiredo completed her Ph.D. in the Informatics Department at the University of California, Irvine. Her research interests lie at the intersections of Human Computer Interaction and Health informatics. Figueiredo’s research focuses on the data work individuals perform when self-tracking for health. Her research examines how data work influences individuals’ daily lives, and how technological, organizational, and societal factors influence and shape individuals’ data work. Her research particularly focuses on stigmatized domains where individuals may be marginalized by the medical system and technology industry. Figueiredo has been awarded the 2020 Microsoft Dissertation Grant and the UCI Miguel Velez Endowment Scholarship for Latin American Scholars. Figueiredo’s research has been published in leading human-computer interaction and health informatics venues such as CHI, JAMIA, CSCW, and the Foundations and Trends® in Human-Computer Interaction. Her papers have received honorable mention awards at CSCW 2020 and CHI 2021, and the 3rd place award at AMIA 2017 students’ competition. Figueiredo received a B.S. and a M.S. degree in Computer Science from Universidade Federal do Pará, in Brazil.