Informatics to Support Learning Networks and Distributed Research Networks
Many research and improvement activities, especially those that involve rare, pediatric, or chronic conditions, require the ability to pool, access or query data from multiple institutions. Here we describe informatics architectures that support quality improvement and research networks, or learning networks, as well as those that can support large-scale distributed research networks. Even though the activities and motivations of these networks are very different, they still require many of the same considerations in order to perform meaningful analysis on data that have been collected in multiple settings. This includes the measurement and characterization of data quality, the use of standardized or common data models, and the tracking and management of patient privacy, among others. We describe the informatics architectures of several learning networks, and two distributed research networks, detailing the commonalities and differences between them.
