1. Tribal Health 101 State Perspective

2. NAPHSIS History Formally organized in 1933 to represent the State Registrars in all 57 vital records jurisdictions (50 states, 5 territories, DC, NYC) Name changed in 1958 to include support of public health statistics functions in addition to vital records/civil registration In 1996 became the National Association for Public Health Statistics and Information Systems

3. NAPHSIS National Association for Public Health Statistics and Information Systems Vision: An accurate, timely, and secure record of all vital events in the nation Our Mission: NAPHSIS provides national leadership for both vital records and related information systems in order to establish and protect individual identity and improve population health.

4. Organization 9 member Board of Directors - 2 year terms 7.5 FTE staff + consultants

5. Committees/Work groups Annual Meeting Program Awards By-Laws Communications Corporate Members Data Quality eHealth EVVE Fact of Death Good-to-Great Inter-Jurisdictional Exchange Mass Fatality Membership Nominating Registration Security Social Security Admin. Statistics

6. Central Challenge Provide National Advocacy for Member Jurisdictions Expand and Strengthen NAPHSIS Identity and Visibility Grow and Diversify Financial Resources Develop and Deliver Quality Products and Services Strengthen NAPHSIS Organizational Effectiveness Strategic Priorities Establish NAPHSIS as the proactive leader for developing, protecting, and using Vital Records and Statistics Systems Strategic Map 2013-2016 Expand & Strengthen Member Involvement & Strategic Partnerships Cross- Cutting

7. Key Projects Electronic Verification of Vital Events (EVVE) State and Territorial Exchange of Vital Events (STEVE) Comprehensive Vital Statistics Standards Security Guidelines Vital Statistics Improvement Cause of Death eLearning Module for Physicians Proposed Vital Statistics Model Law Revisions –Definition of “Government agency” means a unit of local, state, federal, or tribal government

8. State Diversity TOTAL – BIRTHS (57) Open 8 Closed44 Closed w / limited access (old records) 1 Unknown 4 TOTAL – DEATHS (57) Open13 Closed30 Closed w / limited access (old records) 10 Unknown 4

9. Example 1990-2001 Oklahoma Death Certificate Linkage to IHS database –Findings Before Recode: 19,257 [4.2% of total deaths] After Recode: 28,491 [6.2% of total deaths] Change: Increase of 48.0% Higher frequency among older populations Highest percent increase among younger pop’l [5-14 (89%) and 15-24 (66%)] Almost 50% increase in the number of disparities among rankable causes of death –Results Quantified the problem OK2SHARE integration of linked data in death and cancer modules Inclusion of linked data in reports Continued linkages, thanks to Melissa Jim, NDI… Education for other PH programs and PH partners

10. Oklahoma Age Adjusted Mortality Rates

12. Example Choctaw Nation Health Services Death Linkage Project What is their patient population dying from Resource Patient Management System (RPMS) data limited Cause of Death field missing many times Indian Health Service linked data sometimes not readily available to tribal health organizations. Still often hard to identify the major causes of mortality at the Service Unit Level

13. Benefits The information can be used to improve data quality and reveal real mortality data at the service unit level. The project has high potential to help the Choctaw Nation determine the actual causes of death among those served by the Choctaw Nation Health Services. This data will assist health planners in developing future direction for the CNHSA. The development of a trust relationship on health data sharing Ultimately work at sharing hospital / health services data with the OSDH to improve the state-wide health information data.

14. Opportunities Create/join NAPHSIS workgroups / user groups State/Jurisdictional and National level –Investigation of disparities –Develop of best practices or templates –Bring understanding regarding cultural considerations –Bring understanding around complexities of the various health (or political) systems –Assist with educating facilities and partners on the importance & use of vital records Data quality Timeliness

15. Considerations Encourage ongoing support for NDI IHS linkage NDI data linkage sharing part of IJE agreement? EVVE?

16. Other Possibilities Open door to exchange other data (Discharge) Health system linkage to other public health data systems Increased capacity for additional linkages Networking Joint effort to modify state legislation to allow data sharing

17. Questions