Designing in the Dark: Eliciting Self-tracking Dimensions for Understanding Enigmatic Disease

The design of personal health informatics tools has traditionally been explored in self-monitoring and behavior change. There is an unmet opportunity to leverage self- tracking of individuals and study diseases and health conditions to learn patterns across groups. An open research question, however, is how to design engaging self-tracking tools that also facilitate learning at scale. Furthermore, for conditions that are not well understood, a critical question is how to design such tools when it is unclear which data types are relevant to the disease. We outline the process of identifying design requirements for self-tracking endometriosis, a highly enigmatic and prevalent disease, through interviews (N=3), focus groups (N=27), surveys (N=741), and content analysis of an online endometriosis community (1500 posts, N=153 posters) and show value in triangulating across these methods. Finally, we discuss tensions inherent in designing self-tracking tools for individual use and population analysis, making suggestions for overcoming these tensions.