ABSTRACT
Aortic dissection (AD) is a life-threatening rare disease that occurs as a spontaneous tear in the wall of the aorta. Survivors of AD go on to have a chronic disease process that requires lifelong follow-up and management. Although the COVID-19 pandemic has strained health systems and impacted practice in the United States, the effects of these impacts on people living with or at risk for AD is not well understood. This mixed methods project examined the experiences of people in the AD community during the COVID-19 pandemic between March and October 2020. Results reveal that the AD community lacked clear guidance on the role aortic health status plays in COVID-19 risk and experienced significant disruptions in aortic healthcare. At the same time, the new expansion in access to medical care with telehealth conferred unforeseen benefits in the form of reduced barriers for access to specialized aortic health care.
Subject(s)
Aortic Dissection , COVID-19 , Aortic Dissection/diagnostic imaging , Aortic Dissection/epidemiology , Aortic Dissection/therapy , Aorta , COVID-19/epidemiology , Humans , PandemicsABSTRACT
As the COVID-19 pandemic continues to unfold and states experience the impacts of reopened economies, it is critical to efficiently manage new outbreaks through widespread testing and monitoring of both new and possible cases. Existing labor-intensive public health workflows may benefit from information collection directly from individuals through patient-reported outcomes (PROs) systems. Our objective was to develop a reusable, mobile-friendly application for collecting PROs and experiences to support COVID-19 symptom self-monitoring and data sharing with appropriate public health agencies, using Fast Healthcare Interoperability Resources (FHIR) for interoperability. We conducted a needs assessment and designed and developed StayHome, a mobile PRO administration tool. FHIR serves as the primary data model and driver of business logic. Keycloak, AWS, Docker, and other technologies were used for deployment. Several FHIR modules were used to create a novel "FHIR-native" application design. By leveraging FHIR to shape not only the interface strategy but also the information architecture of the application, StayHome enables the consistent standards-based representation of data and reduces the barrier to integration with public health information systems. FHIR supported rapid application development by providing a domain-appropriate data model and tooling. FHIR modules and implementation guides were referenced in design and implementation. However, there are gaps in the FHIR specification which must be recognized and addressed appropriately. StayHome is live and accessible to the public at https://stayhome.app. The code and resources required to build and deploy the application are available from https://github.com/uwcirg/stayhome-project.