1. United States Health Information Knowledgebase (USHIK) A Data Registry Project 17 February 1999 Open Forum on METADATA REGISTRIES

2. 17 Feb 1999 2 Purpose of Briefing Provide Status of Data Registry Project –United States Health Information Knowledge Review –Goal –Approach –Requirements –Milestones –Benefits

3. 17 Feb 1999 3 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.

4. 17 Feb 1999 4 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 11179 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 American Standards Institute (X12) Health Level Seven (HL7) National Council of Prescription Drug Program (NCPDP) National Committee on Vital and Health Statistics (NCVHS)

5. 17 Feb 1999 5 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 used? Codes can be download 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 : 07-329-4837.00000692.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

6. 17 Feb 1999 6 HIPAA Data Needs Catalogue and harmonize data elements and coordinate version control across multiple independent organizations e.g. X12, HL7, NCPDP, HCFA, etc. Support for HIPAA functional users (Payers, Clinical, Public Health, Research, etc) and their application developers Support data sharing with cross-system and cross- organization descriptions of common units of data

7. 17 Feb 1999 7 HIPAA Data Needs Assist users of shared data to have a common understanding of a unit of data’s meaning, representation, and identification Provide multiple access paths to metadata, such as high level model, programs, agreements (transaction sets, implementation guides, etc.), or data collections (core data set, attachments, identifier systems, etc.)

8. 17 Feb 1999 8 HIPAA Data Needs Functional experts maintain and control a specific part of the shared data registry –HIPAA data standards content is controlled by originating groups who have expertise to best maintain and enhance their content while users of the knowledge are from many other organizations Experts have the knowledge Experts have stewardship Experts have localized control in their domain Maintenance is scoped to the functional area Usage is scoped to the federalization of data registries Usage refers to appropriate authority

9. 17 Feb 1999 9 Data Registry Prototype Purpose Capture information about data elements View based upon criteria Analysis comparisons of same or similar data concepts –names –definitions –allowable values (code sets) –format and size

10. 17 Feb 1999 10 Data Registry Prototype Purpose Data Registry development –utilize coalition products –obtain hardware/software operating environment –participate in coalition product enhancement Data Registry operation –content administration –establish access methods and link to content

11. 17 Feb 1999 11 Data Registry Prototype Scope Apply ISO 11179 data representation standards to selected data from –X12 834 enrollment implementation guide –NCPDP enrollment subset –National Committee on Vital and Health Statistics (NCVHS) Core data elements Map data elements to high level information model (Australian National Health Information Model)

12. 17 Feb 1999 12 Data Registry Prototype Scope Construct and populate relational database to contain metadata which is both scaleable and extensible Develop web-based access tool to allow dynamic selectable viewing based upon –elements associated with a concept –side-by-side comparison of selected elements

13. 17 Feb 1999 13 Data Registry Users Data User - A data user is a person who is interested in the meaning and context of a standard for use in specification of standards, regulations, policies, reports, and application systems. System Developer - A system developer is a person who is interested in the meaning, context, and representation, including domain values, of a standard for use in the development of the application systems or commercial-off-the-shelf products. Standards Developer - A standards developer is a person who is interested in developing, publishing, and maintaining standards within an organization including Standards Development Organizations.

14. 17 Feb 1999 14 Data Registry Capabilities

15. 17 Feb 1999 15 Demonstrate 10 Data Registry Capabilities

16. 17 Feb 1999 16 Demonstrate 10 Data Registry Capabilities (continued)

17. 17 Feb 1999 17 Data Registry Time Line Obtain Resources Establish Team USHIK Project Aug 1998 Dec 1998 Feb 1999 Establishes requirements, develops, implements, and demonstrates capabilities Document Requirements Develop Data Registry Load Information Demonstrate Capabilities

18. 17 Feb 1999 18 Data Registry Benefits Exposure of HIPAA data specifications to multiple audiences in a standardized manner Easier to find and reuse data specifications Easier to recognize similarities and differences Promotes common understanding Content administered close to functional areas Ability to link to other authoritative sources Reuse of data registry technology by various public and private organizations

19. 17 Feb 1999 19 Data Registry - Applicable Documents ISO/IEC 11179, Specification and Standardization of Data Elements Part 1: Framework for the Specification and Standardization of Data Elements Part 2: Classification for Data Elements Part 3: Basic Attributes of Data Elements Part 4: Rules and Guidelines for the Formulation of Data Definitions Part 5: Naming and Identification Principles for Data Elements Part 6: Registration of Data Elements ANSI dpANS X3.285, Metamodel for the Management of Sharable Data Registry Concept of Operations Data Value Domain (Work item in ISO/IEC JTC1 SC32) 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) http://www.epa.gov/edr http://www.aihw.gov.au http://speckle.ncsl.nist.gov/~ftp/x3l8/x3l8docs/dvd2-1.wp5 http://speckle.ncsl.nist.gov/~ftp/x3l8/x3l8docs/drconops.rtf http://speckle.ncsl.nist.gov/~ftp/x3l8/x3l8docs/x3.285/docs/ dpx3-285.doc http://speckle.ncsl.nist.gov/~ftp/x3l8/11179/ 11179-6.wp6 http://speckle.ncsl.nist.gov/~ftp/x3l8/11179/ 11179-5.wp5 http://speckle.ncsl.nist.gov/~ftp/x3l8/11179/ 11179-4.wp6 http://speckle.ncsl.nist.gov/~ftp/x3l8/11179/ 11179-3.wp6 http://speckle.ncsl.nist.gov/~ftp/x3l8/11179/ 11179-2.wd6 http://speckle.ncsl.nist.gov/~ftp/x3l8/11179/11179-1.doc ItemLocation

20. 17 Feb 1999 20 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 S3-02-01 Baltimore, MD 21244-1850 410.786.6872 / 410.786.8532 Fax rmayes@hcfa.gov Department of Defense - Health Affairs –Marco Johnson Chief, Data Administration Functional Integration and Data Administration Information Management, Technology and Reengineering DoD Health Affairs / TRICARE Management Activity 5111 Leesburg Pike, Suite 810 Falls Church, VA 22041-3206 703.681.5611 / 703.681.8845 Fax marco.johnson@tma.osd.mil http://hirs.brooks.af.mil/mhss/index.html National Health Information Knowledgebase (NHIK) from Australian Institute of Health and Welfare (AIHW) –http://www.aihw.gov.au Environmental Data Registry (EDR) from the U.S. Environmental Protection Agency (EPA) –http://www.epa.gov/edr Future address of United States Health Information Knowledgebase (USHIK) on DoD Health Information Service (HIRS) –http://registry.hirs.osd.mil/registry/

21. 17 Feb 1999 21 Conclusion/Recommendation Watch the development and demonstration of the United Status Health Information Knowledge (USHIK) standards based data registry Utilize the USHIK data registry application or other similar application within your organization to assist in cataloging and harmonizing data elements with other organizations