United States Health Information Knowledgebase Meeting the Challenge of Health Care Information Integration May 16, 2007 Laura Reece, Ph.D. FDA Data Management Council May 16, 2007

2 What is national health information? National health information is information that either is national in coverage or has national relevance and relates to: the health of the population the determinants of the population’s health, including external factors and those internal to individuals health programs or health services, covering information on the nature of the services provided and their management, resourcing, accessibility, use and effectiveness the relationships among these elements

3 Why is it needed? To enable informed decision making To guide consumers’ decisions To provide needed information about the needs of the populations, the effectiveness of their interventions and for whom, and the acceptability of these interventions To compare the effectiveness and efficiency of healthcare To make decisions in health industry and governments need information about how to provide services equitably, efficiently and effectively

4 Content Introduction Background Standards Capabilities & Value Accomplishments Questions

5 Introduction USHIK Goals: To provide and maintain a metadata registry of health information data element definitions, values, and information models which will enable browsing, comparison, synchronization, and harmonization within a uniform query and interface environment. Build, populate, demonstrate, and make available for general use a data registry to assist in cataloging and harmonizing data elements across multiple organizations.

6 Facilitate comparison and crosswalk with existing standards and development of new metrics

7 Background Nearly a decade in existence Collaborative effort from a changing mix of federal organizations Based on earlier implementations Based on national and international standard

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9 USHIK Registry Contents ANSI HL7 2.4, 2.5 ANSI X12N ANSI ASTM NCPDP SCRIPT, Batch, Data Dictionary American Dental Association Specif HIPAA MHS Functional Area Model (FAM-A) Public Health Care Data Standards IEEE: Medical Device Communications Industry Group (IEEE 1073) NCVHS Clinical Care Classification (Nursing Taxonomy) DICOM (Imaging)

10 The USHIK is an Implementation of ISO/IEC – Information technology--Metadata registries (MDR) ISO/IEC a standardized way of describing information. Data Elements and their component parts Relationships among Data Elements Includes both Conceptual and Logical (Representational) level objects

11 Data Element Concept Conceptual Domain Classification Scheme Related Documents and URLs Value Domain Conceptual Domain Data Type Min/Max Length Low/High Value Format Unit of Measure Precision Valid Values –Value Meanings Preferred Name/Context/Language Alternative Names/Context/Language Preferred Definition/Context/Language Alternative Definitions/Context/Language Example Related Data Elements Derived and Composite Data Elements Registration Information Registration Authority, Registrar Unique Registration ID Reg. Authority, Data ID, Version ID Registration Status Submitter Org, Submitter Assigned Steward Administrative Status and Notes ISO/IEC Data Element (DE) Standard Attributes & Relationships Important for Data Governance Important for Data Interoperability Important for Semantic Understanding

12 ISO/IEC Core Meta-Model Data Element Concept Value Domain Data Element Conceptual Domain Perception Representation Object Class Property Represen- tation

13 ISO/IEC Core Meta-Model Data Element Concept Value Domain Data Element Conceptual Domain Perception Representation * * 1..1 Sexes Male Female Other Sex_Code (Census) 01 – Male 02 - Female Person.Sex Person.Sex:Code Object Class Property SexPerson Gender_Type (NIH) XY - Male XX – Female XXY – Underdeveloped Male XYY – Overdeveloped Male X – Underdeveloped Female Person.Gender:Code Gender_Code (HHS) M - Male F – Female O - Other Person.Gender:Type * Hypothetical Example

14 The USHIK is an Implementation of ISO/IEC – Information technology--Metadata registries (MDR) ISO/IEC a standardized way of describing information. Data Elements and their component parts Relationships among Data Elements Includes both Conceptual and Logical (Representational) level objects

15 Capabilities Data elements are described in common format High Level Information Model Assists in Grouping Data Elements Data Elements are Linked to Model Views Data Elements Linked by Different Organizations Appear Together Uniform, objective comparison across multiple standards Comparison Matrix Aids in Harmonizing Data Elements Data Element Usage Shows Linkages Between Data Elements

16 New Capabilities Related Data References shows relationships among data elements Links to external sources for immediate reference and viewing “native” format Pre-built downloadable query results updated regularly Examples illustrating data element usage provided by the SDOs (in process)

17 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 Accomplishments HIPAA – The Health Insurance Portability and Accountability Act CHI – Consolidated Health Informatics HITSP - Healthcare Information Technology Standards Panel

19 Initiatives HIPAA – The Health Insurance Portability and Accountability Act Title II of HIPAA requires the establishment of national standards for electronic health care transactions and national identifiers for providers, health insurance plans, and employers. CHI – Consolidated Health Informatics Adopts a portfolio of existing health information interoperability standards (health vocabulary and messaging) enabling all agencies in the federal health enterprise to “speak the same language” based on common enterprise-wide business and information technology architectures. HITSP - Healthcare Information Technology Standards Panel - The mission is to serve as a cooperative partnership between the public and private sectors for the purpose of achieving a widely accepted and useful set of standards specifically to enable and support widespread interoperability among healthcare software applications, as they will interact in a local, regional and national health information network for the United States.

20 Value Government programs can use this tool: –To compare their data elements with those in USHIK for harmonization –To develop data elements for new programs based on those in USHIK, and –To stay current with standards developing organizations (SDO’s) changes in their standards –To aid in harmonization among States & Territories Certification authorities can use this tool: –To verify that data elements in a given EHR system are interoperable with the data elements in: A specific interoperability criterion, A specified data standard, or Another specific system

21 USHIK Strategic Federal & Business Use Contributes to President’s eGov initiative support (Consolidated Health Informatics initiative-CHI) Value to Health Information Technology Standards Panel (HITSP) Using USHIK in each HITSP lifecycle Phase 1: Gap Analysis & Standards Selection Phase 2: Standard Specificity Phase 3: Interoperability Specifications Clinger-Cohen Act mandates facilitation of eGovernment – Citizen business relationships USHIK is a focal point to publish federally designated health standards, data elements and definitions (metadata) online

22 USHIK use by HITSP Technical Committees To support a mapping analysis –E.g., do two standards have the same demographic variables and representations To support the gap analysis after the standards have been selected by the Technical Committee –For comparing the required data elements of the use case with what the chosen standard contains To objectify the standards selection process by providing a neutral, identical presentation of the candidate standards To support giving feedback to the SDOs for improving a standard to fit the needs of the use case –Ask the SDO if some specific changes are possible to improve interoperability (cross-organizational, cross-system data sharing) Publish choices and document for long-term maintenance

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

24 How AHRQ and CMS Support HITSP By providing a USHIK health information specialist assigned to the Technical Committee for one use case –To learn the standards selection process of the HITSP TC –To provide expertise at using USHIK to answer TC questions –To provide expertise at using USHIK to present comparisons across standards requested by the TC –To display choices made by the TC in a standard metadata registry format

25 How AHRQ and CMS Support HITSP (cont.) By providing a potential method for comparing the standards choices made by a HITSP TC with those choices made by another HITSP TC By providing an opportunity for helping HITSP to streamline the processes of standards screening, selection, and gap analysis

26 Comparison Matrix Aids in Harmonizing Data Elements

27 Summary USHIK Is a Well-advanced Metadata Registry for Healthcare Information Standards Provides Opportunity to “manage” a myriad of Standards Data Elements Offers a Platform from which to closely examine Relationships, Overlaps, Gaps Forms a Navigable Platform for Browsing and Viewing Has demonstrated utility for integrating and harmonizing healthcare information standards Built to an internationally-recognized standard

28 Demonstration Model-based navigation Comparison matrix tool Linkage to SDO sites

Contacts for Michael Fitzmaurice, PhD, AHRQ Senior Science Advisor for Information Technology Office of the Director, Agency for Healthcare Research and Quality Laura J. Reece, Ph.D. 29

30 Discussion

31 Links to external sites by individual element

32 Links to parent generic element on WPC site

33 Related Data References example

34 Administration screen

35 Relationships to other models, agreements, collections, initiatives

36 Role-based Access

37 Secure Administrative Interface

38 Easy editing interface