common data elements and metadata: their roles in integrating public health surveillance and...
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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: [email protected])
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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"Managing data, information, and knowledge will be the business driver”
- Robert S. Seiner, Data Administration Newsletter
Is Metadata Significant?
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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 (S&LC)– Integration Project: NEDSS– For more information:http://www.cdc.gov/od/hissb
HISSB created
1995 200019971996 19991998
S&LC Integration Project
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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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S&LC 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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S&LC 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????