Observing health in everyday living: ODLs and thecare-between-the-care

Creating technological solutions that support health everywhere requires understanding the context of health and the vernacular of those engaged in it within that context. Within the formal healthcare system, institutional environments dominate and perspectives of biomedical science and the health professions govern the characterization of disease, illness and related terminology. In the everyday living context, the myriad viewpoints of the person prevail within informal, highly personal environments. The words used to characterize concern the manner in which symptoms are interpreted, and even the language employed arises from one's lived experience. In this paper, based in our work with Project HealthDesign grantee teams, we advocate for an expanded notion of the contexts of health, extending beyond hospitals and clinics to homes, workplaces and communities. We also introduce a new vernacular, observations of daily living (ODLs), a novel type of patient-generated health data that Project HealthDesign participants revealed to us. ODLs reflect feelings, thoughts, behaviors, exposures and actions; they serve as cues to healthy action and indicators of personal health states. We conclude with recommendations to the PUC community to leverage in designing tools useful for the personal, everyday context experience of health.