1. Public-private Partnership to establish a Public Health Surveillance System for AIAN

2. Indian Health Status Collaborative started in 2003 1. Tribal Health Board California Rural Indian Health Board (CRIHB) 2. Indian Health Service (IHS) Area Office California Area Office 3. State Department of Health Services California Center for Health Statistics 4. University University of California San Francisco

3. AI / AN in California: Large Census Population AI / AN: Bridged Estimate All472,692 Not Hispanic 225,265 Hispanic247,427 * US Census 2000, Bridged Estimate Report 2003

4. concerned about AIAN statistics 1. California Center for Health Statistics concerned about AIAN statistics Low Population Density AI / AN –1.6% of state population –4.3% is largest portion of any county population High Racial Misclassification of AI / AN –30% to 70% depending on data type

5. Example: California Mortality Rate for AI / AN RACE (non-Hispanics) Age-Adjusted RATE* White804.5 AI / AN517.0 Black1,079.7 Asian / Pac Isl.506.2 * Year 2000 Rate per 100,000 people, Adjusted with Year 2000 Standard Million Population

6. AI / AN in Indian Health Service: User Population * Indian Health Service Calif200020012002200320042005 Users 65,29966,61767,26669,23871,69675,195

7. Tribal Health Programs (THP) Service Areas in 37 of 58 counties Tribally owned and operated, Mainly IHS Funded

8. 2. Tribal Health Board in California concerned about no AIAN data Inform IHS funding allocation process –Uses mortality rates by cause (5) –Perception that CA AIAN are healthier Inform Disparities reduction efforts –Perception that CA AIAN had no disparities Advocate for fair treatment –Evaluate health impact of disparities in funding of California THP

9. The Collaborative Links IHS Data to State Data Use IHS Active User Population data to identify AIAN –Validated Social Security Number (to link) –Other Demographic fields to improve linkage Link to state health data bases –Deterministic linkage (SSN only) –Probabilistic linkage Obtain comparable data for Whites

10. IHS data identifies AIAN which is then linked to state data bases AIAN Active Users to Death Certificates to Hospital Discharges to Medicaid to Birth Certificates to Cancer Registry (SEER) to AIDS Registry

11. Racial Misclassification in State Data CaliforniaPercent of Records Death Certificates26% Hospital Discharges61% Medicaid Not Determined Birth Certificates23% Cancer Registry (SEER) In Progress AIDS Cases Not Determined

12. Effect of Racial Misclassification on the Disparity in Death Rates AI / AN non- Hispanics* White non- Hispanics Rate Ratio [95% C.I.] State data5178050.64 IHS-State Linked data 1035858 1.21 [1.13,1.29]

13. Hospitalization Disparity Rate Ratios by Cause for THP Service Areas Diabetes Cardiovascular Disease Asthma Tobacco Alcohol & Drug Cancer Preventable

14. Disparities in Hospitalization Rate Ratios by THP Service Area

15. Major Factors in Success Needs of all three groups are served Long-term commitment (took 5 years) –No turnover in major players Consistent commitment –Everyone showed up every time to deal with IRB issues Follow-through –Findings used in testimony, reports and journal articles produced change in perception and funds

16. Thanks to Collaborative Members:  California Rural Indian Health Board (CRIHB)  California Area Office of the Indian Health services (IHS)  California state Center for Health Statistics (CHS)  University of California San Francisco (UCSF), Institute for Health Policy Studies James Crouch Margo Kerrigan James Sutocky Carol Korenbrot Chi Kao Sara Ehlers UC Berkeley: Karen Garcia* Sarah Johnson Matthew Pearn Sharon Lee