Examining Self-Tracking by People with Migraine: Goals, Needs, and Opportunities in a Chronic Health Condition

ABSTRACT

Self-tracked health data can help people and their health providers understand and manage chronic conditions. This paper examines personal informatics practices and challenges in migraine, a condition characterized by unpredictable, intermittent, and poorly-understood symptoms. To investigate how people with migraine track and use data related to their condition, we surveyed 279 people with migraine and conducted semi-structured interviews with 13 survey respondents and 6 health providers. We find four distinct goals people bring to tracking and data: 1) answering questions about migraines, 2) predicting and preventing migraines, 3) monitoring and managing migraines over time, and 4) enabling motivation and social recognition. Each goal suggests different needs for the design of tools to support migraine tracking. We also find needs resulting from an individual's goals evolving over time, their varied personal experiences, and their communication and collaboration with providers. We discuss these goals and needs in terms of opportunities for personal informatics tools to facilitate learning to: 1) avoid common pitfalls; 2) support customization and flexibility; 3) account for burden, negativity, and lapsing; and 4) support management with uncertainty.

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Index Terms

• Human-centered computing