Pains and Palliation in Distributed Research Networks: Lessons from the Field

Large-scale comparative effectiveness research studies require detailed clinical data collected across disparate clinical practice settings and institutions. Distributed research networks (DRNs) have been promoted as one approach to wide-scale data sharing that enables data sharing organizations to retain local data ownership and access control. Despite significant investments in distributed data sharing technologies, clinical research networks using distributed methods remain difficult to implement due to a broad range of organizational and technical barriers. The panelists represent four different research networks are in different stages of implementation maturity and are leveraging different informatics technologies. Challenges common to all DRNs include governance, semantic interoperability, and identity management. This panel will describe some of the critical challenges and experimental solutions to implementing, expanding, and sustaining DRNs. Each panelist will focus on a specific challenge that requires new informatics tools to reduce barriers to participation and data sharing.