IHE Quality, Research and Public Health Technical Framework Supplement – Data Element Exchange (DEX)

A major barrier to repurposing electronic health record (EHR) data for clinical research studies is that information systems in the domains of patient care and clinical research use different schemas and terminology systems. This means the data within each system is stand-alone and not interoperable.

This document describes the Data Element Exchange (DEX) Profile, which adds mapping metadata to an annotated data capture form at the point of form design. This creates a metadata registry that defines and maintains correspondences between research and healthcare data elements.

Main sections:

· DEX actors, transactions and content modules

· Actor options and required actor groupings

· Overview

· Use case #1: Pre-population of a Research Case Report form

· Use case #2: Eligibility determination

· Use case #3: Observational study

· Use case #4: Public health case reporting

· Use case #5: Public health case reporting, USHIK

· Use case #6: Epidemiological study in a document sharing HIE environment

· Security and cross profile considerations

· Transactions: Retrieve Data Element List [QRPH-43] and Retrieve Metadata [QRPH-44]

· Appendix A: Schema and WSDL

· Appendix B: Informative appendix on ISO/IEC 11179 data element definition

· Appendix C: Specifications of value sets used in the DEX Profile