Common Data Elements and Metadata: Their Roles in Integrating Public Health Surveillance and Informa

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Common Data Elements and Metadata Their Roles in
Integrating Public Health Surveillance and
Information Systems

• Ron Fichtner, Chief, Prevention Informatics
  Office Alan Sim, Public Health Informatics
  Fellow
• (e-mail avs3_at_cdc.gov)National Center for
  HIV,STD, TB PreventionCenters for Disease
  Control and Prevention (CDC)

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Outline

• Introduction
• Metadata
• CDC
• Standards Integration Initiatives
• Uses of Metadata at CDC
• Metadata Options for the Future

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Is Metadata Significant?

• "Managing data, information, and knowledge will
  be the business driver
• - Robert S. Seiner, Data Administration
  Newsletter

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Definition of Metadata

• Metadata is information, documented in IT tools,
  that improves both business and technical
  understanding, of data and data-related
  processes.

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About CDC

• 11 Centers, Institute, and Offices (CIOs)
• Collect data, convert data into knowledge, and
  apply knowledge to accomplish its mission
• To promote health and quality of life by
  preventing and controlling disease, injury, and
  disability

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Problems

• Multitude of disparate CDC surveillance systems
  and software products
• Lack of uniform standards (e.g. multiple codes
  sets, user interfaces, etc.)
• Duplicative work

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HISSB Processes

• Health Information and Surveillance System Board
  (HISSB)
• Standards and Liaison Committee (SLC)
• Integration Project NEDSS
• For more information
• http//www.cdc.gov/od/hissb

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Standards Liaison Committee

• History
• Purpose
• Functions
• Facilitate development of CDC wide standards
• Interact and communicate with other standards
  development groups
• Primarily targets CIOs, state health departments,
  and other federal agencies

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SLC Deliverables

• 20 common data elements standardized
• Common Data Elements (CDE) Implementation Guide
  http//www.cdc.gov/data/index.htm
• Metadata Registry Prototype
• Formalized relationships with leading standards
  development organizations (e.g. HL7, X12)

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SLC Lessons Learned

• Define scope at onset
• Support multiple representations
• Participate and influence US international
  standards process (i.e. standards development
  organizations)
• Market products

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Integration Project NEDSS

• National Electronic Disease Surveillance System
  (NEDSS)
• Purpose
• Current Situation
• Proposed Integrated System

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NEDSS Deliverables

• Data Model
• Common Information for Public Health Electronic
  Reporting (CIPHER) Standards
• Common User Interface Standards
• Framework for Component Development and Reuse

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Related Activities

• Health Alert Network/Secure Data Network
• Electronic Laboratory Reporting

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Metadata Use

• Potential ways CDC can use metadata
• Support ongoing standards process
• Core of Integration project
• Facilitate development of a standard vocabulary
  (e.g. common case definitions)
• Share and receive metadata from other
  agencies/organizations

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Metadata tool

• Standards based
• Promotes convergence
• Dissemination of concepts
• Downloadable tables
• Encourages reuse of standards
• If internet-based, registry widely accessible

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Metadata Registry Prototype

• Metamodel based on ISO11179 / ANSI X3.285
• Facilitate dissemination of standards
• Tool for comparison
• Serves as a proof of concept
• Simple design, easy to develop and use

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ISO11179 / ANSI X3.285

• Metamodel Regions

• Stewardship region
• Naming and identification region
• Classification region
• Data element concept administration region
• Conceptual domain and value domain administration
  region
• Data element administration region

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Prototype (Back End)

• Database created in Microsoft Access
• Written in Visual Basic 6.0

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Prototype (Front End) Features

• HTML, Javascript
• Browser independent (IE 5.0, Netscape)
• Tables downloadable in text or XML
• Available on CDC Intranet

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Options for CDC

• Develop CDC registry internally
• Expand on existing prototype
• Start from scratch
• Adopt existing registry (EPA or HCFA/DOD)
• Contract out

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Develop CDC Registry

• Advantages
• Able to focus on organizational concepts
• Train internal staff
• Practice by doing
• Disadvantages
• Time
• Huge learning curve

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Expand on Existing Prototype

• Maintenance/Versioning
• Searching/Grouping Features
• Enable comparison of multiple standards
• Reference other existing standards (e.g. SNOMED,
  ICD-CM, HL7, UMLS, etc.)

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Adopt Existing Registry

• EPA (Environmental Data Registry)
• HCFA-DOD (US Knowledgebase)
• Interagency Agreement?

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Adopt Existing Registry

• Advantages
• Save resources to focus on other activities
• Share concepts with participating agencies
• Promote organizational metadata to broader
  audience
• Disadvantages
• More complex
• (perceived) lack of centralized control?

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Contract

• Advantages
• Obtain services of company with metadata
  implementation expertise.
• Maintenance (in the short-term)
• Disadvantages
• Internal staff left in the dark
• Still requires data modeling, consensus building,
  etc.

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Future of Metadata at CDC

• Short Term
• Common data element standards
• Standardized codes for clinical findings
• Long Term
• CDC or HHS supported enterprise-wide data
  registry

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Final Words...

• Metadata serves as a mechanism to facilitate
  convergence towards the use and adoption of
  standards it is this process upon which the
  integration of systems is made possible.

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Your Feedback.

• How to integrate and use other efforts (e.g. data
  model, standards development, etc.) in
  facilitating the collection and management of
  metadata?
• Build, Buy, or Join?
• How to market and obtain buy-in from involved
  parties (upper management, CIOs, systems)?
• ISO11179, OIM (Metadata Coalition) -- Competing
  Standards????