CAREER: Adaptive, Collaborative User Interfaces for Chronically Ill Adolescents' Personal Data Management

Georgia Tech Research Corporation, Atlanta GA

Investigators

Abstract

This project is about developing collaborative technologies for tracking personal information, in the context of helping teenagers with chronic health conditions track data to manage their illnesses. Increasingly, data such as sleep duration and physical activity can be inferred through fitness trackers and smartphone sensors, but personal experiences such as symptom tracking, pain, and sleep quality still need to be tracked manually. This is effortful, especially for teenagers with immature self-care abilities. Thus, one key aim of the project is to design collaborative strategies for collecting self-report data that vary the timing, method, and person used to collect the data to maximize the quality and consistency of data collected for particular teens, given their condition, self-care abilities, and family situation. A second key aim is to align this self-report data with data sensed by smartphones and fitness trackers, developing algorithms and visual displays that help teens and families review the data together and make good decisions about the teens' condition. For both data collection and review, the tools developed will need to be sensitive to problems such as differences in parents' and teens' views of the condition and teens' needs to become independent and establish personal identity. To do this, the research team will work very closely with families with chronically-ill teens, doing field studies of how families currently manage this sort of tracking, interviews with teens and parents both together and separately, and short-term studies with prototype tools as they build and improve them. The project will end with a long-term evaluation of the tools to see how they affect teens' attitudes and abilities related to self-care, as well as how they work with their families and doctors. The work will inform the lead investigator's courses on human-computer interaction and personal health informatics, and support the development of summer camp outreach activities to K-12 students, using health informatics to increase their interest in STEM research. The research work will proceed in three main phases, working closely with adolescent patients and doctors at multiple medical centers in the Atlanta area. The first phase involves formative work around the first aim of eliciting personal health care information and defining requirements for mobile sensing applications that embody collaborative data collection, presentation, and management techniques. This will involve interview studies with teens, parents, and caregivers, to elicit their attitudes toward and perceptions of collaborative personal health management technologies. It will also utilize pilot deployments of strategies for collecting data through ecological momentary assessments and experience sampling, with frequency and timing guided in part by automatically-sensed data. The second phase aims at building a fully functional prototype system, with three main components: (1) implementation of data collection strategies proven effective in the first phase; (2) development of augmented data fusion techniques that triangulate self-reported with sensed data; and (3) creation of both algorithms for analyzing the fused data and visualizations that support these analyses. This prototype will then drive the third phase, an 18-month study with 60 families in three groups: one that will use the full prototype, one a version that replaces the collaborative elicitation strategies with an existing, standard sampling strategy, and one as a control group. The analysis will examine how the system affects both adolescents' and parents' privacy concerns, acceptance of both self-reported and sensed mobile data collection in general and with this tool in particular, the effort required to use the tool, and adolescents' self-efficacy and health locus of control. The evaluation will utilize both standard survey instruments for quantitative measures and interviews with adolescents as they use the tools over time.