The Voice of Endo: Leveraging Speech for an Intelligent System That Can Forecast Illness Flare-ups
Adrienne Pichon, Jessica R. Blumberg, Lena Mamykina, Noemie Elhadad
Abstract
Managing complex chronic illness is challenging due to its unpredictability. This paper explores the potential of voice for automated flare-up forecasts. We conducted a six-week speculative design study with individuals with endometriosis, tasking participants to submit daily voice recordings and symptom logs. Through focus groups, we elicited their experiences with voice capture and perceptions of its usefulness in forecasting flare-ups. Participants were enthusiastic and intrigued at the potential of flare-up forecasts through the analysis of their voice. They highlighted imagined benefits from the experience of recording in supporting emotional aspects of illness and validating both day-to-day and overall illness experiences. Participants reported that their recordings revolved around their endometriosis, suggesting that the recordings' content could further inform forecasting. We discuss potential opportunities and challenges in leveraging the voice as a data modality in human-centered AI tools that support individuals with complex chronic conditions.
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