Integration of Hematopoietic Cell Transplantation Outcomes Data: Data Standards Are Not Enough

摘要

To complete large-scale clinical research, organizations must share data. Because institutional database schemas are inherently heterogeneous, they need a standard metadata representation in order to exchange and combine data for multi-center research. The AGNIS application (A Growable Network Information System) facilitates the exchange of hematopoietic cell transplantation outcomes data using data standards. However, adoption rates remain low due to a significant mapping burden. The AGNIS experience shows that developing a data standard is not enough. Tools and resources are needed to facilitate utilization of the standard.