title: The Shared Health Research Information Network (SHRINE): a prototype federated query tool for clinical data repositories.
abstract: The authors developed a prototype Shared Health Research Information Network (SHRINE) to identify the technical, regulatory, and political challenges of creating a federated query tool for clinical data repositories. Separate Institutional Review Boards (IRBs) at Harvard's three largest affiliated health centers approved use of their data, and the Harvard Medical School IRB approved building a Query Aggregator Interface that can simultaneously send queries to each hospital and display aggregate counts of the number of matching patients. Our experience creating three local repositories using the open source Informatics for Integrating Biology and the Bedside (i2b2) platform can be used as a road map for other institutions. The authors are actively working with the IRBs and regulatory groups to develop procedures that will ultimately allow investigators to obtain identified patient data and biomaterials through SHRINE. This will guide us in creating a future technical architecture that is scalable to a national level, compliant with ethical guidelines, and protective of the interests of the participating hospitals.
authors: Information Technology, Harvard Medical School, 107 Avenue Louis Pasteur, Boston, MA 02115, USA. weber@hms.harvard.edu
authors: Griffin M
authors: GM
authors: Weber
authors: Shawn N
authors: SN
authors: Murphy
authors: Andrew J
authors: AJ
authors: McMurry
authors: Douglas
authors: D
authors: Macfadden
authors: Daniel J
authors: DJ
authors: Nigrin
authors: Susanne
authors: S
authors: Churchill
authors: Isaac S
authors: IS
authors: Kohane
mesh_terms: D001900:Boston; D006302:Health Services Research; D006751:Hospital Information Systems; D006755:Hospital Shared Services; D006801:Humans; D016247:Information Storage and Retrieval; D014481:United States; D014584:User-Computer Interface