Improving Cancer Surveillance and Mortality Data for AI/AN Populations
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1 Improving Cancer Surveillance and Mortality Data for AI/AN Populations Melissa A. Jim, MPH (Diné) Epidemiologist, Cancer Surveillance Branch Assigned to IHS Division of Epidemiology and Disease Prevention Northwest American Indian Regional Cancer Conference August 17, 2011 National Center for Chronic Disease Prevention and Health Promotion Division of Cancer Prevention and Control
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3 Background Race misclassification of AI/AN occurs in cancer surveillance and vital statistics data bases Varies by state Decreasing misclassification can improve accuracy of health indicators and program planning/resource allocation
4 NPCR and SEER NPCR* SEER NPCR/SEER * National Program of Cancer Registries (CDC) Surveillance, Epidemiology, and End Results Program (NCI)
5 Indian Health Service (IHS) Linkage Identify AI/AN cases misclassified as non-native Link administrative records from IHS with records from central cancer registries (NPCR and SEER) Results are captured in IHS Link variable that is part of the NAACCR layout
6 IHS Linkage AK WA OR ID CA NV NV UT AZ MT WY CO NM ND SD NE KS OK TX VT ME MN NH WI NY MA MI RI PA CT IA NJ IL IN OH DE WV MO VA KY MD NC TN AR SC MS AL GA LA HI FL Link every year Link every 5 years
7 IHS Linkage Use improved data to report cancer burden of AI/AN Annual Report to the Nation on the Status of Cancer, , Featuring Cancer in American Indians and Alaska Natives Cancer Supplement: An Update on Cancer in American Indians and Alaska Natives,
8 AI/AN Cancer Supplement Alaska Northern Plains Pacific Coast Hawaii Southwest East State CHSDA* County Included Excluded Southern Plains *Contract Health Service Delivery Areas
9 Number of individuals identified by IHS linkage for 2006 data submission Pre-link Post-link ,380 1,129 Alaska East Northern Plains 3,310 2,402 Southern Plains Pacific Coast 423 Southwest
10 AI/AN cancer rates per 100,000 for All Sites, both sexes, compared to US NHW rate, Pre-link Post-link Alaska East Northern Plains Southern Plains Pacific Coast Southwest US NHW
11 AI/AN cancer rates per 100,000 for All Sites, both sexes, compared to US NHW rate, All Counties CHSDA Counties Northern Plains Alaska Southern Plains Pacific Coast East Southwest NHW
12 Limitations IHS only covers 57% of the AI/AN population Linkage between a state cancer registry and a Bemidji Area Tribe diagnosis years IHS identified 614 individuals that were not identified as AI/AN by the registry Bemidji Area Tribe identified 242 individuals that were not identified as AI/AN by the registry OR by linkage with IHS
13 National Death Index (NDI)-IHS Linkage Link records from the National Death Index (NDI) with the Indian Health Service NDI is the central index of death record information on file in state VS offices Established as a resource to aid investigators with mortality ascertainment activities Identify AI/AN deaths misclassified as non-native Use improved data to report cancer mortality of AI/AN
14 Cancer Among the Navajo Report was produced in response to professional & community concerns that cancer may be increasing among the Navajo Tribal-specific cancer report Navajo Nation Tribal Epi Center Dornell Pete, MPH IHS Navajo Area Carmelita Sorrelman, MPH Susie John, MD New Mexico Tumor Registry (SEER) Chuck Wiggins, PhD Arizona Cancer Registry (NPCR) CDC Division of Cancer Prevention and Control Melissa Jim, MPH
15 Tribal Linkages Inter Tribal Council of Michigan (ITCMI) Interested in linking tribal enrollment data with the Michigan Cancer Surveillance System to produce tribal cancer summaries Provide training to ITCMI employees to build capacity to pursue tribal data linkages
16 Conclusion Racial misclassification can be addressed by data linkages Provide better data for cancer control programs
17 Melissa A. Jim, MPH Epidemiologist Cancer Surveillance Branch CDC Division of Cancer Prevention and Control c/o IHS Division of Epidemiology and Disease Prevention 5300 Homestead Road NE Albuquerque, NM or
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