1. 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 Prevention Centers for Disease Control and Prevention (CDC)

2. Outline Introduction –Metadata –CDC Standards & Integration Initiatives Uses of Metadata at CDC Metadata Options for the Future

3. "Managing data, information, and knowledge will be the business driver” - Robert S. Seiner, Data Administration Newsletter Is Metadata Significant?

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

5. 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”

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

8. 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 2000 1997 1996 1999 1998 S&LC Integration Project

9. 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

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

11. 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

12. Integration Project: NEDSS National Electronic Disease Surveillance System (NEDSS) –Purpose –Current Situation –Proposed Integrated System

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

14. Related Activities Health Alert Network/Secure Data Network Electronic Laboratory Reporting

15. 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

16. Metadata tool Standards based Promotes convergence Dissemination of concepts Downloadable tables Encourages reuse of standards If internet-based, registry widely accessible

17. 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

18. 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

20. Prototype (Back End) Database created in Microsoft Access Written in Visual Basic 6.0

22. Prototype (Front End) Features HTML, Javascript Browser independent (IE 5.0, Netscape) Tables downloadable in text or XML Available on CDC Intranet

28. Options for CDC Develop CDC registry internally –Expand on existing prototype –Start from scratch Adopt existing registry (EPA or HCFA/DOD) Contract out

29. Develop CDC Registry Advantages –Able to focus on organizational concepts –Train internal staff –“Practice by doing” Disadvantages –$$$$$ –Time –Huge learning curve

30. 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.)

31. Adopt Existing Registry EPA (Environmental Data Registry) HCFA-DOD (US Knowledgebase) Interagency Agreement?

32. 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?

33. 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.

34. 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

35. 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.”

36. 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????