Patient-Centered Visualization for Personal Health Records

Shifts in the consumer health landscape including the active participation of consumers within their care, the myriad of health information sources available to them, and the emphasis on preventive care, require patients to have improved information access and health literacy skills. Designers of eHealth tools must consider how best to meet the information needs of patients given that prior research has indicated that needs vary, making it unlikely that there is a homogeneous approach that will meet all needs. In spite of this, iterative design and inclusion of consumer feedback in the design process remain underutilized. This dissertation addressed this gap by creating a protocol for the design of a patient-centered information visualization for a specific population of interest, implemented here with lung cancer screening patients. Building upon past efforts in eHealth design and usability testing, the design centered on a method to produce a conceptual information model, which consisted of a five-step process that documented patient information needs and identified content and methods to address those needs. The model integrated information from various health education sources and provided dynamic personalized displays of the educational information alongside an individual’s radiology report. For this work, this model was displayed via a patient portal visualization, and evaluated by patients to determine whether patients reported the visualization as usable and whether using the visualization improved health literacy. These results were compared to a survey of general health consumers’ information preferences and health literacy. Initial results confirm that health literacy and information preferences varied by demographics (including education and the number of times prior an individual had used a patient portal) and suggest that patients find the integration of educational information alongside their reports, in contrast to the reports alone, as easier to use. The results of this study can be used as guidelines to further additional design of eHealth tools