CRII: CHS: SCH: Novel User Interfaces for Reporting Personal Health Data to Lay Individuals

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CRII: Novel User Interfaces for Reporting Personal Health Data to Lay Individuals Advances in computing technology now offer individuals unprecedented ways to access personal health data. Such data will reach people in fluctuating emotional states and might deliver information that has life-altering implications. Significant gaps exist in our understanding of how computing systems can expertly report these data to laypeople. This CRII project will align the design of electronic data reporting tools with expert communication strategies and the needs of lay individuals, in the context of oncology care. These tools will be designed to supplement, not replace, individuals' communication with their caregivers. The project will enable the construction of a rich set of data related to communicating personal health information throughout oncological care. After encoding and analyzing the data collected, results of the analysis will be used to formulate design guidelines for interaction techniques and graphical techniques to convey personal health data in a user interface. We expect that the resulting tools will aid cancer patients in managing and acting on personal health data related to cancer diagnosis, treatment and prolonged remission. In addition to the oncology setting, results of the proposed studies should prove beneficial in chronic illness management, particularly for illnesses in which patient engagement with their health data is critical in achieving positive health outcomes. This research focuses on assembling a rich set of quantitative and qualitative data to formally characterize both the technical complexity and emotional sensitivity of clinical data types common to oncology care. These data will be used to define, in subsequent research, the sets of variables, dependencies and structural features of computational models to make possible the development of automated approaches to conveying clinically-relevant health data to lay end users. Studies will be conducted in clinical field sites with oncologists and their patients, using a combination of ethnographic methods and surveys. Data collected through these methods will be iteratively coded and analyzed using descriptive, thematic analyses employing a combination of inductive and deductive approaches. Analyses of these data will uncover specific design guidelines for computing tools that convey personal health data to lay individuals in oncology care. A preliminary design based on these guidelines will be developed and iteratively refined based on input from oncology patients, oncologists, and patient-clinician communication researchers. The resulting design will be embodied in a prototype containing interaction techniques and graphical and linguistic framing techniques that demonstrate expert capability in the presentation of clinically-relevant health data. The prototype system will select framings of example data and demonstrate the interaction and presentation techniques designed. Pilot tests of the prototype will be conducted with a subset of the clinicians recruited in earlier phases of the project as well as individuals with prior experience managing chronic illness, recruited at the study site.