Instrumenting the Healthcare Enterprise for Discovery Research

Healthcare has grown so large that it encompasses multiple national agendas. Such a large presence requires instrumentation of the healthcare system to understand what is happening to us, the recipients of healthcare, and to be able to efficiently conduct research to improve healthcare delivery and to improve the state of
biomedicine by advancing its science.

i2b2: A key enabling technology for this instrumentation is provided by i2b2 ('Informatics for Integrating Biology and the Bedside") which is the name of a National Center for Biomedical Computing and also the name of an open source software suite developed by this Center which has been widely adopted nationally and internationally. Applications have included genomics studies, pharmacovigilance, quality improvement, disease registries and trial recruitment.

SHRINE, the Shared Health Research Information Network implements a distributed query mechanism across multiple hospitals (e.g. represented by their data warehouses such as i2b2). SHRINE helps researchers overcome one of the greatest problems in population-based research: Compiling large groups of well-characterized patients. Qualified investigators may use the SHRINE web-based query tool to determine the aggregate total number of patients at participating hospitals who meet a given set of inclusion and exclusion criteria (currently demographics, diagnoses, medications, and selected laboratory values). Because counts are aggregate, patient privacy is protected. These data will be most useful for investigators interested in: Generating new research hypotheses Planning research requiring large sample sizes not easily available at any single institution Preparing grant applications that would benefit from pre-identification and/or characterization of a potential research cohort Identifying potential cohorts for clinical trials Conducting research in the areas of population health and health services. SHRINE has been implemented across four Harvard affiliated hospitals (with over 6M patients), in the northwest across several large academic health centers, and is under development in many other regional collaborations including in Europe.