The learning objectives include: 1) An introduction to the compilation and integration of clinical and research data from multiple disparate sources 2) Understanding the authorization issues related to reuse of patient clinical data 3) Understanding the terminology issues related to the reuse of coded clinical and research data 4) Familiarity with the approach being taken at the National Institutes of Health to collect, integrate, and code clinical and research data into a single repository, for authorized resuse in biomedical research.
Research data at the National Institutes of Health are fragmented into multiple repositories, including historical archives, commercial clinical information systems, institute and center (IC) systems, and individual researchers' computer files and notebooks. A repository for these data, called the Biomedical Translational Research Information System (BTRIS) is being designed and constructed to serve as single resources for researchers to access data collected in the course of their work, as well as for other researchers interested in reusing these publicly funded data to answer additional questions. This presentation will describe the technical, informational, and political challenges to the creation of such a system, as well the approach being taken to address these challenges. The current prototype system will be described and demonstrated.