United States Health Information Knowledgebase (USHIK) A Data Registry Project 18 January 2000

2 Purpose of Briefing Provide Status of Data Registry Project –United States Health Information Knowledge Review –Goal –Approach –Today’s Situation –Data Registry Overview –Some Examples –Point of Contact

18 January Data Registry Project Goal Build, populate, demonstrate, and make available for general use a data registry to assist in cataloging and harmonizing data elements across multi-organizations. Utilize selected Health Insurance Portability and Accountability Act (HIPAA) data elements for demonstration.

18 January Data Registry Approach Collaborative effort –Department of Defense (DoD) - Health Affairs (HA) and Department of Health and Human Services - Health Care Financing Administration (HCFA) funded and controlled –Members of requirements team include representatives from Department of Veteran Affairs, Health Level Seven, Department of Health and Human Services - Health Care Financing Administration (HCFA), and Department of Defense - Health Affairs (HA) –Builds on Environment Protection Agency and Australian Institute of Health and Welfare implementations –Utilizes DoD - Health Affairs’ Health Information Resource Service (HIRS) to develop and implement data registry Establish data registry based on International and National Standards –ISO/IEC Specification and Standardization of Data Elements –ANSI X3.285 Metamodel for the Management of Shareable Data standards Load Health Industry Standards –Department of Health and Human Services - Health Care Financing Administration (HCFA) to load data selected Health Insurance Portability and Accountability Act (HIPAA) related data into data registry Accredited Standards Committee, Health Care Task Group (X12) Health Level Seven (HL7) National Council of Prescription Drug Program (NCPDP) National Committee on Vital and Health Statistics (NCVHS)

18 January Today’s Situation (i) HCFA and DoD have developed the USHIK to demonstrate the use of a data registry that: –Focuses on Health Insurance Portability and Accountability Act (HIPAA) data. –Contains data definitions from X12, HL7, and NCPDP. –Functions based on ISO/IEC metadata standard –Utilizes the Australian Institute of Health and Welfare (AIHW) high level information model to facilitate grouping of data definitions. USHIK is available for review at:

18 January Today’s Situation (ii) Current HL7 and X12 information refreshed –HL7 to Reference Information Model Version 3.0 release 0.92 –X12 to May 1999 “Final Document” information DoD and HCFA are populating Agency versions of USHIK for internal use. Department of Veteran Affairs is using parts of USHIK for its internal data registry. HCFA is collaborating on the development of a terminological analysis software capability with Angelo Rossi Mori and Fabrizio Consorti of ITBM-CNR and University LA Sepienza, Roma, Italy.

18 January Today’s Situation (iii) HCFA has offered to support operation of the USHIK by Health Informatics Standards Board (HISB) for one year in order for HISB and Standards Development Organizations to utilize and evaluate data registry benefits. Standards Development Organizations as of 27 October –American Society For Testing and Materials (ASTM) – will participate. –National Council for Prescription Drug Programs (NCPDP) – will participate. –Health Level 7 (HL7) – will participate. –Accredited Standards Committee X 12 (X12) – is considering participating. –American Dental Association (ADA) – is considering participating. HCFA will (1) load SDOs current data element information into USHIK, (2) perform the initial mapped of the data elements to the Australian Institute of Health and Welfare Model, and (3) develop a list of policy issues to be addressed by HISB and the SDOs.

Methods of Finding Data Elements Data Registry Overview … Birth Date Hair Color Eye Color Sex... Data Elements ABCDEFGH.. Initiatives Health Insurance Portability and Accountability Act... Data Collections HCFA Long Term Care BRFSS Data Agreements X12 NCVHS Core Data NCPDP Organizations CDC AHCPR NCVHS Models HL7-RIM DoD HA FAM-D AIHW What data elements are used? Data elements are described in common format. References to Authoritative Sources NCPDP (National Council for Prescription Drug Program) Data Element X12 (American Standards Committee) Transaction Set -Data Element -Composite Data Element HL7 (Health Level Seven) Reference Information Model -Subject Area -Class -Attributes AIHW (Australian Institute of Health and Welfare) Model -Model Subtype -Information Model Subtype -Data Element -Data Concept -Composite Data Element -Derived Data Element … Person_Sex Gender Sex_Category Code... Where are data elements defined? Codes can be downloaded for use in applications. A data registry is a place to keep facts about characteristics of data that are necessary to clearly describe, inventory, analyze, and classify data. A data registry supports data sharing with cross-system and cross-organization descriptions of common units of data. A data registry assists users of shared data to have a common understanding of a unit of data’s meaning, representation, and identification. Identifying and Definitional Attributes: Data Element ID : v1 Name : Gender Code Context : X12 Data Dictionary Definition : Code indicating the sex of the individual Status : Received as of 01/19/1999 Example : Synonyms/Keywords : Comment : Data Collection Methods : Relational and Representational Attributes: Data Type : ID Representational Form : Representational Layout : Minimum Size : 1 Maximum Size : 1 Unit Of Measure : Precision : Minimum Range : Maximum Range : Data Domain: Permissible value Domain Meaning Name Domain Meaning Definition Text A Not Provided B Not Applicable F Female M Male N Non-sexed U Unknown X Unsexable Related Data References: Object Relationship Related Item Type Gender Code is composite part of X12 Data Dictionary Standards Alternate Names and Contexts: Name Context Gender Code X12 Data Dictionary 1068 X12 Data Element Number

18 January Data elements are described in common format. (i)

18 January Data elements are described in common format. (ii)

18 January Data elements are described in common format. (iii)

18 January High Level Information Model Assists in Grouping Data Elements

18 January Data Elements are Linked to Model Views Model Views Data Elements

18 January Data Elements Linked by Different Organizations Appear Together NCPDP Data Element ( Registration Authority) X12 Data Element ( Registration Authority)

18 January Comparison Matrix Aids in Harmonizing Data Elements

18 January Data Element Usage Shows Linkages Between Data Elements

18 January Point of Contacts and Example Data Registry Sites Health Care Financing Administration –Bob Mayes Director, Information Systems Group Office of Clinical Standards and Quality Health Care Financing Administration 7500 Security Blvd., Bldg S Baltimore, MD / Fax Department of Defense - Health Affairs –Marco Johnson Chief, Operational Architecture Information Management Information Management, Technology & Reengineering TRICARE Management Activity Office of Assistant Secretary of Defense ‑ Health Affairs 5111 Leesburg Pike, Suite 810 Falls Church, VA / Fax National Health Information Knowledgebase (NHIK) from Australian Institute of Health and Welfare (AIHW) – Environmental Data Registry (EDR) from the U.S. Environmental Protection Agency (EPA) – United States Health Information Knowledgebase (USHIK) on DoD Health Information Service (HIRS) –

18 January USHIK - HL7 Information Model