1. Improving the Population’s Health Through Standards National Center for Health Statistics 2002 Data Users Conference July 16, 2002 Data Policy and Standards Staff National Center for Health Statistics Centers for Disease Control and Prevention

2. Presentation Agenda The Case for Data Standards National Committee on Vital and Health Statistics –Marjorie S. Greenberg Clinical Modification of ICD-10 –Dr. David Berglund International Classification of Functioning, Disability and Health (ICF) –Dr. Paul Placek Public Health Data Standards Consortium –Suzie Burke-Bebee

3. Lessons from September 11 The unimaginable can happen Our information systems are inadequate There’s some urgency We have to do it right

4. Doing it Right Includes Data Standards Essential Building Blocks of Information Systems –Classification Systems and Terminologies (e.g., ICD, ICF, SNOMED) –Core Data Sets (vital statistics, hospital discharge data) –Identifiers (provider, plan, individual) –Message formats (e.g., HL-7 and X12) –Implementation Guides –Privacy and Security

5. The Case for Data Standards Data Standards are the common language that allows: –sharing information –communication across disciplines –integration of disparate data systems –comparisons among data sets –linkage of data in a secure environment

6. The Case for Data Standards Data Standards are the fundamental building blocks for : –an effective and efficient health care system –disease surveillance –monitoring the health and health care of the nation –performing outcomes research –providing information for decision making and policy development

7. The Vision Enhancing the comparability, quality, integrity and utility of health information from a wide variety of public and private sources - at the local, national and international levels - through more uniform data policies and standards

8. The Challenge Participate in the standards development process Influence evolution of standards to assure that they meet the needs of public health, health services research and health policy Comply with standards to reduce provider burden and improve comparability of data Seize the opportunities for enhanced information capabilities provided by standardization

9. Standards Momentum Congress passed and has reaffirmed commitment to Health Insurance Portability and Accountability Act of 1996 (HIPAA) Administrative Simplification Provisions National Committee on Vital and Health Statistics (NCVHS) is promoting standards in PMRI, NHII, 21 st century health statistics and other reports Public Health Data Standards Consortium established in 1999 and continues to grow in membership and scope

10. Standards Momentum National Electronic Disease Surveillance System (NEDSS) developed and is model for bioterrorism grants NCHS and States reengineer vital records State Medicaid agencies embrace standards eHealth Initiative launches Public-Private Partnership

11. Brief Introduction to Data Policy and Standards Staff Classifications Executive Secretariat for National Committee on Vital and Health Statistics Informatics and the Public Health Data Standards Consortium

12. Classifications Activities Maintain ICD-9-CM and develop and implement ICD-10-CM Revise and implement International Classification of Functioning, Disability and Health (ICF) WHO Collaborating Center for the Family of International Classifications for North America Departmental representative to SNOMED Editorial Board Co-Chair HIPAA Implementation Team on Coding and Classification http://www.cdc.gov/nchs/icd9.htm

13. WHO Collaborating Centres for International Classifications ICD and ICF are maintained and promoted by an international network of WHO Collaborating Centres for the Family of International Classifications Centres are established by language and geography; North American Center was established at NCHS in 1976 http://www.who.int/whosis/icd10/collabor.h tm

14. The WHO Family of International Classifications Associated Products Main Classifications Adaptations

15. National Committee on Vital and Health Statistics (NCVHS) Established in 1949 Legislatively authorized since 1974 Advisory to Secretary of HHS on national health information policy History of involvement in –classifications –uniform and core data sets –surveys, vital statistics, population-based data –data for populations at special risk http://www.ncvhs.hhs.gov/

16. National Committee on Vital and Health Statistics Advises DHHS on implementation of the Health Insurance Portability and Accountability Act (HIPAA) administrative simplification provisions –Administrative standards Transactions Code sets Identifiers Security –Clinical standards –Privacy rule –http://aspe.hhs.gov/admnsimp/

17. Informatics and Public Health Data Standards Consortium Represent NCHS at Standards Development Organizations (HL-7 and ANSI X12) and Data Content Committees (e.g., NUBC) Participate in HHS Data Council and its Health Data Standards Committee Founding members and “secretariat” for Public Health Data Standards Consortium

18. Public Health Data Standards Consortium (PHDSC) Outgrowth of consensus recommendation at November 1998 “Workshop on Implications of HIPAA for Public Health and Health Services Research” A coalition of 37 organizations committed to the promotion of data standards for public health and health services research

19. NCVHS Standards Visions Report on National Health Information Infrastructure Standards for Patient Medical Record Information Vision for 21 st Century Health Statistics Report on Classifying and Reporting Functional Status

20. NCVHS Report on a National Health Information Infrastructure We as a nation have a timely opportunity and an urgent need to build a twenty-first century health support system—the national health information infrastructure (NHII). Final report, Information for Health: A Strategy for Building the NHII, was approved in November 2001

21. NCVHS Report on a National Health Information Infrastructure NHII includes not just technologies but values, practices, relationships, laws, standards, systems and applications that support all facets of individual health, health care, and public health It is not a centralized data base but an infrastructure Broad goal is to deliver information to individuals when and where they need it

22. NCVHS Report on a National Health Information Infrastructure Equal importance is attached to personal (consumer), healthcare provider (clinical) and population health dimensions The recommended strategy gives the U.S. Department of Health and Human Services a key leadership role at the center of a broadly collaborative process for the public and private sectors

23. Standards for Patient Medical Record Information (PMRI) HIPAA required NCVHS to study issues and report to Secretary by August 2000 on recommendations and legislative proposals for –Uniform data standards for patient medical record information –Electronic exchange of such information Premise of NCVHS 2000 report: Capture clinically specific data once at the point of care and derive information for every other legitimate use from those data

24. Standards for Patient Medical Record Information (PMRI) NCVHS held hearings on message format standards in 2000-2001 and issued specific recommendations in February: Recognize HL7 as core PMRI standard –HL7 versions 2.2+ are current standard –HL7 version 3 is emerging standard Recognize DICOM, NCPDP SCRIPT and IEEE 1073 as standards for specific market segments Vocabulary standards will be next

25. Vision for 21 st Century Health Statistics Collaborative project of NCVHS, NCHS and HHS Data Council; interim report issued June 2000 Final vision includes ten guiding principles and an overarching conceptual framework Compatible standards serving multiple purposes is one of guiding principles NCVHS has approved recommendations for implementing principles and framework

26. Addressing a Gap: NCVHS Report on Functional Status Issued report in June 2001, based on 18- month long review and hearings Recognized significant value of functional status information in clinical and administrative records Identified International Classification of Functioning, Disability and Health (ICF) as only viable candidate for a code set to classify functional status, using a common language (i.e., standard)

27. Report Findings and Recommendations Health care and health policy must go beyond a narrow disease-based focus ICF is a promising approach to coding functional status and deserves careful study Thorough work is needed before recommendations are made about widespread implementation of ICF A special issue of Health Care Financing Review is being planned on the topic

28. Resources http://www.cdc.gov/nchs.icd9.htm http://www.ncvhs.hhs.gov http://www.cdc.gov/nchs/otheract/phdsc/phdsc.htm http://aspe.os.dhhs.gov/admnsimp http://www.hl7.org http://www.ansi.org/ http://www.wedi.org