Unpacking "Personal" Health Informatics for Proactive Collective Care
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arXiv
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| Format: | Preprint |
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2025
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| _version_ | 1866914580965359616 |
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| author | Srinivasan, Shyama Sastha Krishnamoorthy Kumar, Mohan Singh, Pushpendra |
| author_facet | Srinivasan, Shyama Sastha Krishnamoorthy Kumar, Mohan Singh, Pushpendra |
| contents | Care is primarily a collective phenomenon, with a practice that involves sharing health and wellbeing information within a trusted "care circle" of family members and companions for sensemaking, interpretation, decision-making, and follow-through. However, current digital health tools and information systems are designed for individuals and primarily intended for Personal Health Informatics (PHI). This mismatch between collective practice and individualistic design creates new challenges for the proactive use of such systems in care settings and limits adoption, sustained engagement, and meaningful use. To examine how people practice collective care and how (if) they perceive, adopt, and integrate PHI systems for proactive care, we conducted a sequential mixed-methods study. Through an initial survey (n=87) and semi-structured interviews (n=22), we found that their practices involve collectively understanding, analyzing, and sensemaking health information. However, we also found that their use of existing systems to support such practices is constrained by factors at personal, relational, technological, and structural levels that evolve over time. To explore redesigning PHI toward "Collective Health Informatics", we conducted stakeholder-specific interviews (n=12), a follow-up survey (n=116), and co-design workshops (n=6) to understand the dynamics required for collective settings while retaining agency. Using a design probe evaluation (n=38), we refine a design vision for coordinated, trustworthy action across such care relationships. Our findings motivate CC-Proact, an operational map that translates ecological influences into three design levers: Agency, Elicitation, and Engagement. Using this map, our work empirically examines collective care practices and offers ten design recommendations for building responsible systems that proactively support collective care. |
| format | Preprint |
| id |
arxiv_https___arxiv_org_abs_2509_01231 |
| institution | arXiv |
| publishDate | 2025 |
| record_format | arxiv |
| spellingShingle | Unpacking "Personal" Health Informatics for Proactive Collective Care Srinivasan, Shyama Sastha Krishnamoorthy Kumar, Mohan Singh, Pushpendra Human-Computer Interaction Computers and Society Care is primarily a collective phenomenon, with a practice that involves sharing health and wellbeing information within a trusted "care circle" of family members and companions for sensemaking, interpretation, decision-making, and follow-through. However, current digital health tools and information systems are designed for individuals and primarily intended for Personal Health Informatics (PHI). This mismatch between collective practice and individualistic design creates new challenges for the proactive use of such systems in care settings and limits adoption, sustained engagement, and meaningful use. To examine how people practice collective care and how (if) they perceive, adopt, and integrate PHI systems for proactive care, we conducted a sequential mixed-methods study. Through an initial survey (n=87) and semi-structured interviews (n=22), we found that their practices involve collectively understanding, analyzing, and sensemaking health information. However, we also found that their use of existing systems to support such practices is constrained by factors at personal, relational, technological, and structural levels that evolve over time. To explore redesigning PHI toward "Collective Health Informatics", we conducted stakeholder-specific interviews (n=12), a follow-up survey (n=116), and co-design workshops (n=6) to understand the dynamics required for collective settings while retaining agency. Using a design probe evaluation (n=38), we refine a design vision for coordinated, trustworthy action across such care relationships. Our findings motivate CC-Proact, an operational map that translates ecological influences into three design levers: Agency, Elicitation, and Engagement. Using this map, our work empirically examines collective care practices and offers ten design recommendations for building responsible systems that proactively support collective care. |
| title | Unpacking "Personal" Health Informatics for Proactive Collective Care |
| topic | Human-Computer Interaction Computers and Society |
| url | https://arxiv.org/abs/2509.01231 |