Design and operation of a distributed health data network

IntroductionSeveral large health data networks such as FDA Sentinel, PCORnet, and the Canadian Network of Observational Drug Effect Studies (CNODES) facilitate multi-site research using real-world electronic health data such administrative claims data, electronic health record data and registries. Experience in operation of mutliple health data networks will described.
 Objectives and ApproachOver the past 15 years substantial progress has been made in developing the optimal network operational design, governance, and technical architecture to facilitate the creation and operation of large-scale distributed health data networks. The design, architecture, and operation of a sustainable health data network requires balancing the needs of the network stakeholders such as funders, data sources, investigators, and regulatory bodies while enabling rapid and efficient use of data to support evidence generation and decision making. Important topics include protection of patient privacy, security, data autonomy, distributed analytics, data quality, and protection of confidential information.
 ResultsThe design and architecture of existing distributed health data networks provides