Data architecture for telehealth services research: A case study of home tele-monitoring

Telehealth services research projects often require to access a variety of data sources under different data access policies and privacy constrains. There is a need to link these clinical and administrative records from different data custodians and produce a research data for analytics. One of the challenges is that the research data must meet the data access policies and privacy constraints of all data custodians participating in the project. These data custodians often operate in different jurisdictions. In this paper, we present our practical experience through the design and implementation of a service-oriented data architecture for extracting research data for telehealth services research in the context of a tele-home monitoring project. This project is being carried out at six locations in five different states in Australia. Each site represents a different model of care for the management of chronic disease in the community ranging from community-based, nurse-led programs to a hospital-focused, chronic-disease management program. The aims of this project are wide ranging and investigate many aspects of deploying at home telehealth services to better manage chronic disease. This paper however focuses on data architecture. We highlight the underlying issues, our experience and explain a practical health data linkage protocol adopted in the project. We also explain the features of the research data service portal in operation.