Navigating the Healthcare Service “Black Box”: Individual Healthcare Consumers’ Practices and Design Opportunities

The U.S. healthcare system is known to be complex and fragmented. It presents as a black box to consumers as they often encounter a variety of challenges in obtaining the healthcare services they desire. To obtain a single service, patients often need to coordinate with multiple organizations, such as their employer, an insurance company, a physician practice, and a hospital. Such complexity and fragmentation manifests in isolation between patients, caregivers, organizations, and institutions. Yet little research has been done to understand how patients navigate the black box healthcare system. My dissertation research concerns the practices of parents of young children who navigated the multi-institutional healthcare system on behalf of their children in the United States. Through a narrative interview study of 32 parents from diverse racial, educational, and geographical backgrounds, I document how my participants as organizational outsiders navigated a complex system composed of diverse organizations and gain navigational competence. Building upon the empirical evidence, I conceptualize navigation practices and competence, and demonstrate multiple aspects of navigation practices. I further explore navigation practice in a concrete scenario that is choosing a provider, highlighting several factors that participants considered while making decisions. Lastly, I explore one specific type of navigation practice: the ongoing work that individual healthcare consumers engage in to make the fragmented healthcare infrastructure work for them, as a form of infrastructuring work. Building upon these findings, I discuss how navigation practice mediates the interaction between individual healthcare consumers and the “black box” healthcare system, and how design could better such interaction and help them obtain desired healthcare service