A State’s Experience

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 As a results partnerships with chronic disease service area and specifically cancer registry activities

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

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

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.

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

Results of NDI IHS Linkage

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

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

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

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

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%

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

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)

10 Leading Underlying Causes of Death AIAN Bridged Race Oklahoma AAMR (per 100k) AAMR Bridged Race (per 100k) AAMR IHS Linked (per 100k) Diseases of heart 257.7 248.7 334.5 Malignant neoplasms 194.7 189.9 258.8 Accidents (unintentional injuries) 57.5 68.2 92.6 Diabetes mellitus 30.1 65.1 75.9 Chronic lower respiratory diseases 61.9 49 69.4 Cerebrovascular diseases 56 49.2 65.5 Chronic liver disease and cirrhosis 11.5 26.9 31.5 Nephritis, nephrotic syndrome and nephrosis 16.1 24.8 29.9 Influenza and pneumonia 23.3 23.6 29.7 Intentional self-harm (suicide) 14.9 12 17.5

Considerations Create/join NAPHSIS workgroups / user groups 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

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

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

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

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.

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