This project involves designing and developing a patient-driven mobile phone application to support patients with primary brain tumors in tracking, understanding, and communicating symptom, neurological function, and quality of life information throughout treatment and follow-up.
These patients experience many complex symptoms and challenges, and face a multitude of data and uncertainties that are not currently well captured or understood. Rebecca Hazen is using Participatory Design techniques to engage patients and caregivers in the design process in order to better understand and reflect their needs, preferences, challenges and abilities in the design of the system.
We are especially interested in understanding the unique challenges and abilities these individuals face, from cognitive impairment, to depression and severe fatigue, and developing research and design protocols based on the abilities of the group, and the cognitive requirements of different design activities. Throughout this research, we are working to increase patient engagement and empowerment, while building on the type and amount of data currently captured from these patients for future modeling and prediction research.