1. Data Registry to support HIPAA standards The Health Insurance Portability and Accountability Act of 1996 Title II - Subtitle F Administrative Simplification

2. Overview of HIPAA Provisions Secretary of HHS must adopt standards for electronic health care transactions, unique health identifiers, code sets, security, and privacy All health plans, clearinghouses, and those providers who choose to conduct these transactions electronically are required to implement these standards

3. HIPAA Data Needs Catalogue and harmonize data elements and coordinating version control across multiple independent organizations e.g. X12, HL7, NUCC, NCPDP, ADA, 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

4. 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.)

5. Needs are not unique to HIPAA Global information needs require understanding and interchange of data over broader areas then every before Data dictionaries have provided proprietary, localized, and application system specific data specifications

6. ...nor are the solutions International data registry standards have been established for registration and management of shareable data Data registries based on international standards are continually being implemented Multiple organizations are actively beginning to harmonize their standards based data registries

7. Organizing and relating HIPAA data Perspective Focus What (Data) Objectives/ Scope (Policy Admin.) Business Model (Regulation Admin.) System Model (Designer) Technology Model (Builder) Detailed Representations (Subcontractor) Functioning System (Functional User) Information Subject Areas Object Relationship Models Logical Data Models Database Architecture Data Acquisition Components Databases, Data, and Information DATA DICTIONARY SCOPE DATA REGISTRY SCOPE Actual data Physical Implementation Code Implementation Guides/Code Sets NPRM for HIPAA P.L. 104-191 (HIPAA Law) Data element representations, data types, naming, field lengths, etc Database schemas, File specifications, etc. Data concepts, data elements, definitions, contexts, names, etc. Requiring SDO transactions, SDO code sets, etc. Specification of transaction set/implementation guides, code sets, identifiers, etc. Physical Implementation Specification Zachman Framework copyright -John A. Zachman, Zachman International

8. Participants - Data Registry Prototype DHHS DoD EPA VA AIHW

9. Purpose - Data Registry Prototype 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. Purpose - Data Registry Prototype 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. Scope - Data Registry Prototype Apply ISO 11179 data representation standards to selected data from – –X12 834 enrollment implementation guide – –NCPDP enrollment subset – –NCVHS Core data elements Map data elements to high level information model (Australian National Health Information Model)

12. High level models enhance data exploration Party role Party characteristics Person Group Organization Legal entity Org sub-unit Party relationship Person role Organization role Service provider Service recipient Advocate Service provider Service funder Person characteristics Demographic labor Lifestyle Education Social Legal etc State of Wellbeing Physical Mental Functional Social Economic Cultural etc Organizational characteristics The benefit of a high level model is that it provides a consensus-developed conceptual framework into which specific data elements can be mapped without requiring consensus on the specific characteristics of each element mapped to it.

13. Scope - Data Registry Prototype 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 to a concept showing source – –side-by-side comparison of selected elements

14. Cost Estimate - Data Registry Prototype Assumptions – –1 FTE = $150,000 – –Data registry server housed where sufficient internet access exist, therefore, no additional costs estimated for connection to internet Costs – –Hardware/Software (OS, DB, Web)100,000 – –Develop Data Registry150,000 (4 FTEs / 3 months) – –Load prototype data 150,000 (3 FTEs / 4 months) – –Computer Operation for Data Registry 75,000 (1 FTE for 6 months) Total475,000

15. 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