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Chronic health conditions are becoming increasingly prevalent. As part of chronic care, sharing patient-generated health data (PGHD) is likely to play a prominent role. Sharing PGHD is increasingly recognized as potentially useful for not only monitoring health conditions but for informing and supporting collaboration with caregivers and healthcare providers. In this paper, we describe a new design for the fine-grained control over sharing one's PGHD to support collaborative self-care, one that centers on giving people with health conditions control over their own data. The system, Data Checkers (DC), uses a grid-based interface and a preview feature to provide users with the ability to control data access and dissemination. DC is of particular use in the case of severe chronic conditions, such as spinal cord injuries and disorders (SCI/D), that require not just intermittent involvement of healthcare providers but daily support and assistance from caregivers. In this paper, after providing relevant background information, we articulate our steps for developing this innovative system for sharing PGHD including (a) use of a co-design process; (b) identification of design requirements; and (c) creation of the DC System. We then present a qualitative evaluation of DC to show how DC satisfied these design requirements in a way that provided advantages for care. Our work extends existing research in the areas of Human-Computer Interaction (HCI), Computer-Supported Cooperative Work (CSCW), Ubiquitous Computing (Ubicomp), and Health Informatics about sharing data and PGHD. |
