CAREER: Advancing Pediatric Patient-Provider Communication through Collaborative Tracking and Data Sharing

Regents Of The University Of Michigan - Ann Arbor, Ann Arbor MI

Investigators

Abstract

This research will work to directly involve children in their own healthcare, with their parents and medical providers as collaborating stakeholders. The study is situated among children suffering from cancer and diabetes. This brings focus to the acute difficulties of and need for information sharing and communication among stakeholders in children's healthcare. In treating chronic childhood illness, information, understanding, and open communication with a child patient are vital to decreasing patient distress and anxiety, and achieving better health outcomes. A gap in prior knowledge is how to determine and support the appropriate degree of children’s involvement in their own care. This is difficult because children lack the ability to fully express their needs, manage their treatment, and make care decisions. To address this challenge, this research investigates the roles that technologies can play in supporting child patients’ expression of needs, feelings, and emotions around illness and health, and helping clinicians and parents better understand and communicate about children’s health and psychosocial conditions. The project investigates how mobile, ubiquitous, and cloud-based computing and informatics can support collaborative communication among children, parents, and healthcare providers. Research aims are to investigate (1) the challenges, needs, and viewpoints of key stakeholders in the communication of pediatric care; (2) co-design, through a participatory workshop process, understanding of how to prescribe the role and level of children in tracking and communicating their health-related data, and matching requirements for associated technologies; and (3) a prototype tool for (a) collection of appropriate health data, (b) data sharing among stakeholders, to review health-related data collected, and (c) visualizations of this data, to support analysis and reflection. This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.