The biomedical translational research information system: Clinical data integration at the National Institutes of Health

Abstract

The National Institutes of Health comprises 27 institutes and centers, many of which conduct clinical research. Although most of the data collection carried out on human subjects at the NIHs main campus in Bethesda, Maryland takes place at the NIH Clinical Center (CC), only a portion of these data are recorded into the hospitals electronic health record. The remainder are distributed into various systems hosted by other institutes or the laboratories of the individual investigators. In addition, a substantial set of data were collected into a previous electronic health record system, retired in 2004. The Biomedical Translational Research Information System (BTRIS) provides a single source for all of these data. Key features of BTRIS include a unifying data model that captures the commonality of data from different sources, without losing their distinctive features, a unifying terminology model that maps high-level research concepts such as disease classes and laboratory results to low-level details such as specific diagnoses and laboratory tests, a self-service feature to allow users to obtain data without an intermediary, and a de-identified query facility to support users asking new questions of old data. Data include vital signs, laboratory and radiographic test results, clinical notes, and diagnoses and problems. BTRIS provides data visualization tools and access to relevant radiographic images. Current expansion is under way to include genomic data, mass spectrometry data, and electrocardiogram tracings. This presentation will focus on architectural design choices, policy and social issues related to data access and sharing, and experience to date. © 2012 Springer-Verlag.