Improving Data & Enhancing Access (IDEA-NW) Project

1. Improving Data & Enhancing Access (IDEA-NW) Project Megan Hoopes, Project Director mhoopes@npaihb.org 503-416-3261 Victoria Warren-Mears, P.I. Erik Kakuska, Project Coordinator Jenine Dankovchik, Biostatistician QBM – June 19, 2012

2. Outline • Project overview • Current linkage activities • Data reports and resources available • Tribe-level reports Northwest Portland Area Indian Health Board

3. Background • IHS data and state health data bases both underestimate deaths, hospitalizations, and health events of American Indians/Alaska Natives, but for different reasons • Indian health data (IHS/tribal health programs) • Unlikely for all cancers, hospitalizations, and deaths to be reported in RPMS • Urban AI/ANs or those not eligible for IHS/tribal services where they live will not be in RPMS • Some tribes don’t have a clinic • State data • AI/AN people are not always coded correctly as AI/AN in cancer registries, death records, and other surveillance data systems Northwest Portland Area Indian Health Board

4. IDEA-NW/Registry Project • By linking IHS and state health data together, we can correct data inaccuracies and obtain better estimates of AI/AN health status • NTR = Portland Area IHS Registration file • All AI/AN registered at an IHS or tribal clinic in Idaho, Oregon, and Washington (RPMS sites only), updated annually • Partnership with Seattle Indian Health Board/UIHI increases representation of urban AI/AN • Comparing this list of known-AI/ANs to surveillance data systems can identify AI/ANs coded as another race • No confidential or tribe-specific data permanently exchanged • Linked data provides better information on AI/AN health at area, state, and local levels Northwest Portland Area Indian Health Board

5. Current linkage activities • Death certificates (3 states) • Hospital discharge (WA; OR forthcoming) • Cancer registries (3 states) • Trauma registries (WA & ID will be done soon) • Birth certificates (OR, & ID; WA forthcoming) • Communicable disease system (OR) Northwest Portland Area Indian Health Board

6. Comparison of NTR to census population estimates • Overall, about 84% of NW AI/AN population represented • Oregon: 66% • Idaho: 79% • Washington: 81% • Younger age groups less well represented than older ages • Tribes/service units are not equally represented • Some are close to 100%, while others are represented very little or not at all • This data source under-represents urban populations on the whole, but some cities are pretty close to census estimates • Good: Idaho Falls, Pocatello, Pendleton, Bellingham • Not-so-good: Portland, Seattle

7. Current analysis & reports • Area-level and state-level reports on: • Cancer • Mortality • Unintentional injury & motor vehicle crashes • Leading causes of death • HIV/STD • MCH risk factors and outcomes (in progress) • Check website for more www.npaihb.org/epicenter/project/reports • Specific data requests are always welcome • Next step: Tribal data reports, multi-topic Northwest Portland Area Indian Health Board

8. Local-level/Tribal health profile reports • Assist in efforts to improve wellness and prevent disease in your communities • Identify health priorities • Further understand how data is collected and reported for AI/ANs living in the Northwest • Resource for grant applications and reporting Northwest Portland Area Indian Health Board

9. Bottom line • If your tribe/population isn’t well represented in linkage work, the data we provide back to you won’t be as accurate, complete, or meaningful • Health profile reports will be tribal property, only disseminated within each tribe Northwest Portland Area Indian Health Board

10. Considerations • How well is your tribe represented by the IHS/RPMS data source? • On RPMS? • Clinic/no clinic? • How would you use local-level health data reports? Who should they represent: • CHSDA AI/AN population regardless of tribe • Enrolled population? • Clinic population? • Who (within each tribe) should receive them? Northwest Portland Area Indian Health Board