Data Registry to support HIPAA standardsThe Health Insurance Portability and

Accountability Act of 1996

Title II - Subtitle F

Administrative Simplification

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

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

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.)

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

...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

Organizing and relating HIPAA data

PerspectiveFocus

What (Data)

Objectives/Scope

(Policy Admin.)

BusinessModel

(Regulation Admin.)

SystemModel

(Designer)

TechnologyModel

(Builder)

DetailedRepresentations(Subcontractor)

FunctioningSystem

(Functional User)

InformationSubjectAreas

ObjectRelationship

Models

LogicalData

Models

DatabaseArchitecture

DataAcquisition

Components

Databases,Data, and

Information

DATADICTIONARYSCOPE

DATAREGISTRYSCOPE

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

Participants - Data Registry Prototype• DHHS

• DoD

• EPA

• VA

• AIHW

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

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

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)

High level models enhance data exploration

•Party

•Partyrole

•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.

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

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 Registry 150,000 (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)• Total 475,000

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