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@cdc.gov)

National Center for HIV,STD, & TB PreventionCenters for Disease Control and Prevention (CDC)

Outline

• Introduction– Metadata – CDC

• Standards & Integration Initiatives

• Uses of Metadata at CDC

• Metadata Options for the Future

"Managing data, information, and knowledge will be the business driver”

- Robert S. Seiner, Data Administration Newsletter

Is Metadata Significant?

Definition of Metadata

“Metadata is information, documented in IT tools, that improves both business and

technical understanding, of data and data-related processes.”

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”

Problems

• Multitude of disparate CDC surveillance systems and software products

• Lack of uniform standards (e.g. multiple codes sets, user interfaces, etc.)

• Duplicative work

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

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

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)

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

Integration Project: NEDSS

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

NEDSS Deliverables

• Data Model

• Common Information for Public Health Electronic Reporting (CIPHER) Standards

• Common User Interface Standards

• Framework for Component Development and Reuse

Related Activities

• Health Alert Network/Secure Data Network

• Electronic Laboratory Reporting

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

Metadata tool

• Standards based

• Promotes convergence

• Dissemination of concepts

• Downloadable tables

• Encourages reuse of standards

• If internet-based, registry widely accessible

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

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

Prototype (Back End)

• Database created in Microsoft Access

• Written in Visual Basic 6.0

Prototype (Front End) Features

• HTML, Javascript

• Browser independent (IE 5.0, Netscape)

• Tables downloadable in text or XML

• Available on CDC Intranet

Options for CDC

• Develop CDC registry internally– Expand on existing prototype– Start from scratch

• Adopt existing registry (EPA or HCFA/DOD)

• Contract out

Develop CDC Registry

• Advantages– Able to focus on organizational concepts– Train internal staff – “Practice by doing”

• Disadvantages– $$$$$– Time – Huge learning curve

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.)

Adopt Existing Registry

• EPA (Environmental Data Registry)

• HCFA-DOD (US Knowledgebase)

• Interagency Agreement?

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?

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.

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

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.”

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????