A State’s Experience

1. A State’s Experience

2. Original Project 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

3. 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

4. Direct Linkage with Tribal Health Data Choctaw Nation Health Services Death Linkage Project • What was their patient population was 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

5. Benefits • The information can be used to improve data quality and reveal real mortality data at the service unit level. • 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.

6. Methods • Developed MOU • Update Choctaw Nation’s files with death data • The state did not update any of our information using this data • Choctaw Nation Health Services exported identifiers from RPMS • OSDH linked (deterministic, statistical/probabilistic) • Returned updated file • Choctaw Nation Health Services analyzed their data

7. Results of NDI IHS Linkage

8. Oklahoma Resident Deaths by Bridged Race Categories before and after IHS Linkage 1999-2009

9. Percent of Oklahoma Resident Deaths by Bridged Race Category after IHS Linkage 1999-2009

10. Oklahoma Resident Deaths by Race Categories before and after IHS Linkage 2004-2009

11. Percent of Oklahoma Resident Deaths by Race after IHS Linkage 2004-2009

12. General Findings • On average 750 additional AIAN descendants annually 1999-2003 • After implementing multiple race on death certs in 2004 average went to 584 • Across all ages (0 to 104) • 94.6% were originally coded as White only and 3.88% as Black only • 99% Non-Hispanic • Gender Males (51.1%) Females (48.9%) • By county, the percent of newly identified AIAN ranged from 0 to 64% with an average 15%

13. Oklahoma Age-Adjusted Mortality Rates by Race and IHS Linked Race 1999-2009

14. Top 10 Underlying Causes of Death (OK 2004-2009) Bridged Race AIAN • Diseases of heart • Malignant neoplasms • Accidents (unintentional injuries) • Diabetes mellitus • Chronic lower respiratory diseases • Cerebrovascular diseases • Chronic liver disease and cirrhosis • Nephritis, nephrotic syndrome and nephrosis • Influenza and pneumonia • Intentional self-harm (suicide) Newly Identified AIAN • Diseases of heart • Malignant neoplasms • Accidents (unintentional injuries) • Chronic lower respiratory diseases (up 1) • Cerebrovascular diseases (up 1) • Diabetes mellitus (down 2) • Intentional self-harm (suicide) (up 3) • Alzheimer's disease (up 5) • Influenza and pneumonia (up 1) • Chronic liver disease and cirrhosis (down 3)

15. 10 Leading Underlying Causes of Death AIAN Bridged Race

16. Considerations • Encourage ongoing support for NDI IHS linkage (State’s waive fee?) • EVVE? • Each Jurisdiction’s laws are different • Joint effort to develop model language • Modify state legislation to allow data sharing • Create/join NAPHSIS workgroups / user groups

17. By Partnering • 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 (Linked data) • Develop of best practices or templates

18. 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

19. NAPHSIS • 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

20. NAHSIS • 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.

21. Jurisdictional Diversity TOTAL – BIRTHS (57) Open 8 Closed 44 Closed w / limited access (old records) 1 Unknown 4 TOTAL – DEATHS (57) Open 13 Closed 30  Closed w / limited access (old records) 10 Unknown 4