Surveying a New Multi-Institution Clinical Data Research Network.

Abstract

Cultivated by the Patient-Centered Outcomes Research Network (PCORnet), thirteen regional clinical data research networks (CDRNs) are taking shape across the U.S. The PCORnet common data model was carefully planned, and the data marts assembled by the more than 80 data-contributing institutions (nodes) are undergoing, in 2016-2017, a series of data characterization cycles. PCORnet will adjudge each node's-and thereby, in a significant way, each CDRN's-readiness or unreadiness for multi-institution research. Certifying each node's quality and fidelity is of course essential. But in understanding network readiness there is an additional, vital dimension-one that has received too little attention. It is the development of knowledge about the nature of a CDRN's data, in its federated sense. With visualizations, how might one grasp the meta-data of a CDRN? We outline an approach that builds upon the HealthLNK Data Repository, a forerunner to the Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) CDRN.