United States Health Information Knowledgebase: An Online Metadata Registry J. Michael Fitzmaurice Agency for Healthcare Research and Quality ANSI HITSP Foundation Committee Small-Scale Harmonization May 16, 2007

United States Health Information Knowledgebase (USHIK) Metadata Registry Advantages of Metadata Metadata role in Data Standards Adoption Methods of Standards Development Organizations USHIK Metadata Capabilities / Maintenance of USHIK

Secretary Michael Leavitt created America’s Health Information Community, a FACA to advise him on national health information infrastructure issues Mandate by President George W. Bush for the Office of the National Coordinator (ONC) to lead the development and nationwide implementation of an interoperable health information technology infrastructure to improve the quality and efficiency of health care –Executive Order–August 22, 2006 AHIC breakthrough use cases require the ANSI Health Information Technology Standards Panel (HITSP) Technical Committees to choose standards and data elements for the exchange of relevant health information with other providers to support the clinical delivery of care at a different time and/or setting. Laboratory data and patient registry data, for example AHIC use cases are being developed that illustrate health data transmission and/or exchange for public health purposes, such as bio-surveillance, outbreak management, alerting and communication with health providers, and public health detecting and reporting HITSP-chooses standards, data elements, and identifies any obstacles to attaining use case success. Use case success depends on implementation of the health data elements from health information technology standards.

A metadata registry addresses a significant barrier to standards adoption for hospital systems and others with health-related missions to exchange data -by identifying the individual data elements from mandated (“adopted,” “recognized”) health standards for information comparisons and harmonization across systems and organizations Advantages of USHIK for health data and information programs: –Faster identification of health data information gaps and inconsistencies –Synchronized clinical data for evidenced-based medicine, research, and disease management research (USHIK, DoD, NLM, NCI CaBIG) –Interoperable software products, EHRs and exchanges that can lead to: Reduced software development time because of pre–coordinated health IT data elements selection Improved quality and efficiency of health care Improved patient safety Reduced error rates Lowering of administrative costs Strengthened national public health and disaster preparedness

USHIK is a Metadata Registry. The role of metadata in standards adoption is to describe and make available for use nearly all the data elements found in health standards adopted by federal agencies in the Consolidated Health Informatics Standards (CHI) – and – Nearly all the data elements and definitions in the CHI- and HIPAA-designated standards from organizations such as ANSI HL7, ANSI X12, ANSI ASTM, NCPDP, American Dental Association, the Health Industry Business Communications Council (HIBCC), IEEE: Medical Device Communications Industry Group (IEEE 1073) are available and monitored for updates. USHIK also includes select DoD Military Health System and NCVHS-recommended data elements and definitions – and another advantage – USHIK is build on the Metadata Registry Standard from the International Organization for Standardization (ISO), ISO/IEC 11179, Information Technology – Metadata Registries (MDR)

USHIK can maintain the integrity of the Consolidated Health Informatics Standards (CHI) for benefit of the Office of the National Coordinator (ONC) USHIK is an access point to data elements metadata: –Names –Definitions –Representations and –Other attributes for designated health information technology standards USHIK supports strategies to plan, evaluate and compare electronic health record system requirements, capabilities, and standards with HIPAA-, CHI- and HITSP- adopted standards--for many customers (government programs, vendors, organizations, clinicians, developers, analysts, and administrators) USHIK is an online health metadata registry that public and private organizations may use to harmonize their health information data elements with standards for the national adoption of health information technology standards

USHIK enables the browsing, comparison, synchronization and harmonization of health data elements from multiple standards –> resulting in an online metadata comparison matrix (see next slide) UHISK provides a uniform query and interface environment for data element comparisons that simplifies understanding the definitions of various health information standard terms USHIK is a focal point to publish federally designated standards data elements and definitions (metadata) online that facilitates eGovernment, federal programs, and citizen business relationships

Comparison Matrix Aids in Harmonizing Data Elements

CHI Metadata Focal Point High-level Consolidated Health Informatics United States Health Information Knowledgebase Provides graphic overview of CHI standards Viewpoint for the implementation of CHI Standards

Viewpoint for the implementation of ANSI HITSP Technical Committee use cases Focal point to examine Technical Committee standards, data model relationships Uniform environment to compare, synchronize, harmonize standards overlaps - gaps

USHIK maintains a document registry of all historical documents of record behind a data analysis (metadata of terms & definitions) USHIK can maintain a record of SDO updates to standard data elements over time and provide dates of anticipated/future change USHIK could link to the NIST LANDSCAPE for a drill down from Standards Organization activities to elements in the Standard USHIK could provide a vocabulary service if that feature were added, or link to an existing vocabulary service USHIK can help eliminate a barrier to health data interoperability with matrix comparisons of multiple health data standard data elements

Lessons Learned – (about the) Methods of Standards Development Organization Standards have multiple means of versioning (e.g., major / minor numbering, re-release with corrections) and multiple versions available at any one point in time Workload entailed in loading different identified items varies widely due to the different levels of standardization A large amount of effort required in grooming the metadata to fit into the standard format as most exciting metadata does not exist in any kind of standard format

New standards versions do not identify a delta between the versions, so a metadata difference analysis must be determined Many points for data errors with a tremendous responsibility for Quality Assurance and large load on the team analyzing the standard, determining the differences between the versions, reformatting the metadata into the standard format, and loading the information Metadata finds that changes to standards may be needed to correct errors Changes may be in the structure of the standards Changes may have a cascading affect that may change meaning Changes need to be reviewed to determine if data elements still meet the needs of HITSP, ANSI and CHI Lessons Learned – (about the) Methods of Standards Development Organization

Contacts for Michael Fitzmaurice, PhD, AHRQ Senior Science Advisor for Information Technology, Office of the Director Laura Reece, PhD