1. Promoting Health Data Standards With Public Health at the Table HL7 Trimester Meeting Government Project Special Interest Group September 13, 2000 Suzie Burke-Bebee, NCHS Centers for Disease Control and Prevention

2. Presentation Agenda The case for Data Standards Importance of HIPAA to Public Health and Health Services Research Establishment of Public Health Data Standards Consortium Consortium accomplishments 1999-2000 Consortium Work Plan Early lessons learned

3. The Vision Enhancing the comparability, quality and integrity 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

4. What Data Standards? Uniform or core data sets –Standard Certificates for Deaths, Live Births and Fetal Deaths –Uniform Hospital Discharge Data Set (UHDDS) –Uniform Ambulatory Care Data Set (UACDS) –Long-term care data sets –Core Health Data Elements (1996) –CIPHER

5. What Data Standards? Classifications and Terminologies –International Classification of Diseases (ICD) –International Classification of Impairments, Disabilities and Handicaps (ICIDH) –International Classification of Primary Care –Procedure classifications (e.g., ICD, CPT-4) –Systematized Nomenclature of Human and Veterinary Medicine (SNOMED) –Unified Medical Language System (UMLS)

6. Health Insurance Portability and Accountability Act of 1996 (HIPAA)

7. Reimbursement Utility of Information for Public Health and Research Reimbursement Risk Adjustment Quality Assessment Performance Measurement Outcomes Research Monitor Health Status, Access and Utilization Public Health Surveillance

8. Current Public Health Electronic Standards Activities Data Elements for Emergency Departments (DEEDS) Immunization messages and registries Laboratory findings on communicable diseases Standards for reporting Notifiable Diseases Electronic birth and death registration

9. Implications for Public Health and Research Take advantage of standardization –Comply with standards to reduce provider burden and improve comparability of data –Influence evolution of standards to meet needs Seize opportunity for enhanced information capabilities Address challenges to data access

10. HIPAA Workshop: Implications for Public Health and Health Services Research Held November 2-3, 1998 Sponsored by NCHS and CDC in conjunction with AHRQ and NCVHS Attended by 85 organizational representatives

11. Consensus Recommendation: Develop Public Health and Health Services Research CONSORTIUM Convene organizations around data standards issues Identify high priority data needs Seek formal representation on data content committees (NUBC, NUCC)

12. Consensus Recommendation: Develop Public Health and Health Services Research CONSORTIUM Organize representation on standards development bodies (ANSI ASC X12 and HL-7) Educate public health and research communities about data standards issues Participate in efforts to assure continued access to information

13. Public Health Data Standards Consortium Scope of Data Interests HIPAA claims-related data Birth and death data Disease registry and surveillance data Birth defects data Laboratory data ETC.

14. Follow-up to HIPAA Workshop Established Consortium Listserv to facilitate communication among members and with the public –Send e-mail to LISTSERV@LIST.NIH.GOV with the following text in the message body: SUBSCRIBE PH-CONSORTIUM-L YOUR NAMELISTSERV@LIST.NIH.GOV Established web presence: www.cdc.gov/nchs/otheract/phdsc/phdsc. htm

15. Follow-up to HIPAA Workshop First meeting of consortium convened on January 24 -25, 1999 at NAHDO meeting Approximately 45-50 participants Identified organizations to participate in a steering committee - NCHS/CDC, AHRQ, HCFA, NCVHS, NAHDO, NAPHSIS, CSTE, ASTHO, AHSR, NACCHO, AMCHP, APHL, State Medicaid Directors, cancer registries, mental health

16. January 1999 Meeting Discussed Next Steps Agreed on need for a federal and state representative on National Uniform Billing Committee (NUBC) and National Uniform Claim Committee (NUCC) Decided to test consensus process with consideration on listserv of two new data elements for the claim - race and ethnicity of patient and, for newborn claims, mothers medical record number

17. Consortium Progress Business cases developed for collection of 1) race and ethnicity and 2) mothers medical record number on claim/encounter Active discussion took place on the list serv Discussion on race and ethnicity contributed to a panel presentation at June 1999 NCVHS meeting and to HHS Data Council proposal to ANSI ASC X12 in Feb. 2000

18. Consortium Progress At February 2000 X12 meeting, 837 Work Group approved Department request to change 4031 Institutional Implementation Guide to allow collection of race/ethnicity on claim. At June 2000 X12 meeting, 837 Work Group, Healthcare Task Group and X12N Insurance Subcommittee all approved Consortium request to add Mothers Medical Record Number to the 837 Standard.

19. Consortium Progress NUBC and NUCC both approved two Consortium representatives for membership –NUBC: Bob Davis (NY) State perspective and Marjorie Greenberg (NCHS) Federal perspective –NUCC: Walter Suarez (MN) State perspective and Denise Koo (CDC) Federal perspective

20. Consortium Progress Organized representation at trimester meetings of Standards Development Organizations –Consortium reports on activities at HL-7 through Government Special Interest Group –Public Health Caucus held first meeting at ANSI ASC X12 on June 5, 2000

21. Consortium Progress Contract was awarded to NAHDO to identify and characterize public health and research data needs for State encounter data sets, building on HCUP survey Sponsored with NAHDO an educational teleconference on December 7, 1999 Consortium members have made presentations at a variety of national and regional conferences

22. Consortium Steering Committee Held Meeting on March 21, 2000 45 individuals representing a broad range of organizations participated in a meeting of the Consortium Steering Committee on March 21, 2000

23. Objectives of March 21, 2000 Steering Committee Meeting To receive and discuss presentation from NAHDO on results of its study To prioritize data needs identified by NAHDO and develop work plan To solidify Consortium organizational structure

24. Outcomes of March 21 Steering Committee Meeting Organizations were asked to affirm membership on Steering Committee by naming a principal and alternate member (approximately 20 organizations have done this, including, NCHS/CDC, CDC, AHRQ, HCFA, SAMHSA, AHSR, APHL, ASTHO, CSTE, NACCHO, NAPHSIS, NAHDO,) Established a Planning Group to perform administrative functions of Consortium

25. Outcomes of March 21 Steering Committee Meeting Established a Standing Work Group on Education Prioritized data elements identified in NAHDO Study Solicited members for ad hoc work groups to address high priority data elements and develop recommendations for inclusion or expansion in the HIPAA standard

26. Outcomes of March 21 Steering Committee Meeting Ad hoc Work Groups: –External Cause-of Injury Codes –Payer Type –Mothers Medical Record Number –Readmission and Individual Identifier –Source of Admission –Functional Status

27. Education Work Group Held two conference calls Established Charter with Goals to: –Develop and implement an educational strategy that includes evaluation and feedback –Formulate a plan for developing and delivering educational messages and materials –Communicate work products and accomplishments of ad hoc work groups

28. E-code Work Group Held three conference calls Review business case developed by NAHDO for standardizing and expanding E-code collection in claim transaction Provide additional documentation on current practice, other recommendations Recommend next steps

29. Payer Type Work Group Held one conference call Identified public health need for standard coding scheme (e.g., distinguish between managed care and fee-for-service) Identified inadequacies of X12 code set Considered potential of HIPAA PlanID Agreed on process for developing public health-focused Payer Type code set

30. Early Lessons Learned Need for education on HIPAA and data standards within the public health and research communities is considerable Response to Consortium concept has been very positive Partnership between federal and state levels is key There is strength in numbers

31. Early Lessons Learned Standards Development Organizations and Data Content Committees would like Public Health and Research to speak to them with one voice!

32. Contacts for more information about the Consortium Marjorie Greenberg msg1@cdc.gov Denise Koo dxk1@cdc.gov Suzie Burke-Bebee zxj6@cdc.gov Bob Davis rad01@health.state.ny.us Walter Suarez Walter.Suarez@mhdi.org

33. Resources http://www.ncvhs.hhs.gov http://www.cdc.gov/nchs/otheract/phdsc/ph dsc.htm http://aspe.os.dhhs.gov/admnsimp http://www.wpc-edi.com/hipaa http://www.hl7.org http://www.ansi.org