1. Public Health Data Standards Consortium National Center for Health Statistics 2002 Data Users Conference July 16, 2002 Suzie Burke-Bebee, MS, BSN, RN Data Policy and Standards Staff National Center for Health Statistics Centers for Disease Control and Prevention

2. Presentation Agenda Recognize the Consortium and its membership Identify with its mission Discover common ground Join the ranks (our workgroups)

3. Who is the Public Health Data Standards Consortium Coalition of 37 organizations committed to the promotion of data standards for public health and health services research (see brochure for specific members) –Federal agencies (CDC, AHRQ, CMS, HRSA, NCI, SAMHSA) –State agencies and regional consortia (CA, MA, NE, NY, WA, WI, MHDC, MHDI, PHCCCC) –National professional associations (AHSRHP, AMCHP, ASTHO, APHL, CSTE, eHI, JCAHO, JHU, MHSIP, NACCHO, NAHDO, NALBOH, NAPHSIS, NASADAD, NASHP NASMD, PHF, STIPDA, WGCBHHS)

4. The Consortium Message is Heard! Resulted from the concrete expression of a vision stated at the 1998 Workshop on “Implications of HIPAA for Public Health and Health Services Research” (One Voice) MISSION: –improve the health and health care of the U.S. population through improved health related information by expanding involvement in existing health data standards and content organizations and determining standards needs through consultation with data leaders and data users.

5. Consortium Role Today Advocate Convener Voice Education and Support Resource

6. The Consortium Today Advocate –Promote data standards in public health –State rationale for standards –Build momentum Convener –Gather diverse constituencies (PH and Researchers) –Coordinate data standards activities in PH –Provide forum to exchange ideas

7. The Consortium Today (One) Voice –Ensure one voice is heard from PH and Research in standards development process Education and Support Resource –Support DS implementation at State/Local levels –Conduct outreach to diverse PH communities –Understand the terrain (“The Big Picture”) SDO/DCC/DSMO activities PHs Business Cases – work into the terrain

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

9. The Consortium Message is Embraced! DATA HEALTH DATA HEALTH DATA STANDARDS –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

10. Consortium’s Broad Scope of Data Interests HIPAA claims-related data Birth and death data Disease registry and surveillance data Birth defects data Etc.

11. Consortium’s MAIN Focus 1999-2000 National Association of Health Data Organizations (NAHDO) identified health and research data needs for State encounter data Consortium prioritized data elements –established ad hoc workgroups to develop recommendations for inclusion or expansion in the (HIPAA) standards development organizations

12. Consortium’s MAIN Focus 2001-2002 Developed & implemented EDUCATION STRATEGY - contract with The Lewin Group and NAHDO for: –Building partnerships/educate constituencies –Participating in development of national standards –Supporting implementation of standards Endorsed & prioritized strategies with workgroups established (see brochure for workgroups)

13. Consortium’s MAIN Focus Today Implement Education Strategy –in phases & through workgroups : WRC- BDM HCSDR- ED OB/SP- NHII (future) E-Codes Incorporate → 501(c)3 –for funding educational and marketing projects

14. Success Stories 1999… being at the Table Standards Data Content Committees –NUBC –NUCC Standards Development Organizations –X12 –HL7 Designated Standards Maintenance Organization (the HIPAA change process)

15. Consortium’s Success Stories 1999… Data Mother’s Medical Record Number (on a newborn claim) –X12N - 837 Institutional Standard Race & Ethnicity –X12N - 837 Institutional Guide –X12N – HCSDR Guide E-Code data collection (external cause of injury) –6 fields on UB02 accommodating ICD 10 CM –Multiple codes in HCSDR Guide

16. Success Stories 2002… Education, Communication & Data Web-based Resource Center (WRC) HIPAA-focus initially And beyond - HIPAA Plus Health Care Services Data Reporting implementation guide (HCSDR) Incorporates and standardizes State reporting requirements for encounter data Promotes migration by States to 837 Standard Publication of Guide anticipated October 2002

17. Consortium Challenges 2002 and Beyond Strengthen partnerships –public-private relationships Leverage, not duplicate, other standards activities –Using national healthcare industry standards: X12 including 837 Claim/Encounter Transaction HL7 including the PHCD Model (CDC/NEDSS) Increase participation in Consortium work groups and related activities

18. Consortium Challenges 2002 and Beyond Identify resources for major Consortium projects Spread the standards message (two-way) –EDUCATION “ The great aim of education is not knowledge but action.” Herbert Spencer (1820-1903) B ritish philosopher and sociologist

19. URLs How to join Consortium or join workgroups: – contact Marjorie Greenberg: msg1@cdc.govmsg1@cdc.gov Michelle Williamson: zup9@cdc.govzup9@cdc.gov Suzie Burke-Bebee: zxj6@cdc.govzxj6@cdc.gov Consortium Brochure: – http://www.cdc.gov/nchs/data/phdsc/phdsc0106.pdfhttp://www.cdc.gov/nchs/data/phdsc/phdsc0106.pdf – or available at NCHS DPSS Table

20. URLs Subscribe to the PH-CONSORTIUM-L listserv: send an e-mail to LISTSERV@LIST.NIH.GOV with the following text in the message body: SUBSCRIBE PH- CONSORTIUM-L YOUR NAMELISTSERV@LIST.NIH.GOV More Information about Consortium’s Work Groups: http://www.cdc.gov/nchs/otheract/phdsc/organization.htm –Scroll to each workgroup listed as a hotlink

21. URLs More General CDC Information about – NEDSS – DEEDS – PHCDM – Race & Ethnicity (code set): http://www.cdc.gov/od/hissb/docs.htm

22. Contact Information Suzie Burke-Bebee zxj@cdc.gov 301-458-4125 Public Health Data Standards Consortium www.cdc.gov/nchs/otheract/phdsc/phdsc.htm