Unpacking Personal(?!) Health Informatics for Proactive Collective Care in India

Personal Health Informatics (PHI), which leverages digital tools and information systems to support health assessment and self-care, promises more proactive, user-centered care, yet adoption and meaningful utilization barriers in India remain underexplored. Through a sequential mixed-methods study in urban India (Initial survey (n=87) and semi-structured interviews (n=22), follow-up survey = 116, and co-design workshops (n=6)), we surface practices, perceptions, and behaviors to identify ways PHI can be better utilized for proactive care in the Indian context. We find that PHI is valued for monitoring and enabling collective care; however, its adoption is constrained by low health and technology literacy, usability and integration issues, fragmented and costly technology ecosystems, and mistrust of digital health platforms. From triangulated evidence, we derive concrete design requirements, including user-controlled sharing, accessible analytics, and verifiable health information, and present a culturally grounded design vision for an integrated platform for collective care through design and evaluation of a figma prototype. The prototype evaluation provides further directions for design and development to better orient PHI for proactive care through the PHI-Proact operational map, which involves agency, elicitation, and engagement. Finally, using PHI-Proact, we conclude with concrete recommendations for designing and responsibly deploying PHI systems for proactive collective care in emerging contexts, which differ socially, culturally, infrastructurally, and technologically from WEIRD contexts.