Designing collaborative mobile health experiences for adolescent patients

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Hong, Matthew K.
Wilcox, Lauren
Arriaga, Rosa I.
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The proliferation of patient-generated data and mobile health (mHealth) technologies has provided unprecedented opportunities for patients' everyday health management and active participation in health care. Designing and introducing personally-collected mobile data into pediatric patients' everyday health management tasks, however, brings unique challenges for computing research. These patients will need to collaborate with family and clinical caregivers to successfully manage their care, yet they struggle to articulate their needs and face many barriers that affect their participation in care. My research focuses on the design of collaborative health management tools for adolescent patients (ages 10--19) in onco-hematology and rheumatology settings. It includes a series of qualitative and formative design studies involving patients, family members, and clinicians, to formulate design requirements for mHealth tools for illness documentation, communication, and management. This dissertation describes several completed studies organized under three themes. My early formative work provides an overview of the problem and design space for patient participation in complex chronic care, which informed my decision to focus on tracking illness experiences. Through two collaborative design studies, I characterized patient-defined, patient-generated health data for illness communication, by engaging with patient-parent dyads and clinical professionals. Finally, I describe a long-term probe study and design of a mHealth technology to gain an in-depth understanding of how technology can be designed to support patient-authored illness narratives based on experiential data collaboratively generated by patients and their family caregivers. This research contributes: 1) a critical understanding of the ways that human-centered design can address the primary challenges that adolescent patients face when engaging in complex chronic care management, and 2) design guidelines and artifacts that can inform new tools to support families' collaborative documentation and communication of patient-generated health data in pediatric care.
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