Lessons learned from a community-based participatory research project to improve American Indian cancer surveillance.

BACKGROUND: American Indian and Alaska Native cancer incidence data are limited by underreporting and misclassification. These populations also suffer from a history of research abuse. OBJECTIVES: The project's goal was to use community-based participatory research (CBPR) to assess the local burden of cancer in the American Indian communities in Wisconsin and assess the accuracy of Wisconsin American Indian cancer data. METHODS: Thirteen organizations partnered to conduct a retrospective review of American Indian clinics cancer cases. A match of the clinic identified cases with Wisconsin Cancer Reporting System records was then conducted. LESSONS LEARNED: Relationship building, mutual education, and local engagement in data interpretation were significant factors in this project achieving its objectives and laying a foundation for future research partnerships. CONCLUSIONS: This project demonstrates the successful application of CBPR in a complex multisite project with multiple partners using collective resources to address cancer health disparities.

Improving cancer incidence estimates for American Indians in Wisconsin.

OBJECTIVES: The purpose of this study was to improve the measurement of cancer incidence among American Indians in Wisconsin and compare incidence rates with state and national incidence rates. METHODS: The Wisconsin Cancer Reporting System (WCRS) entered into a data linkage project with CDC and the Indian Health Service (IHS) to improve classification of American Indian cancer cases in Wisconsin. WCRS data were linked to IHS patient registration files to identify American Indian cases that were misclassified as a non-Indian race for the years 1998-2002. American Indian age-adjusted rates and rate ratios for major cancer sites were compared before and after the linkage, and with statewide and national rates. RESULTS: The age-adjusted incidence rate for all cancer among American Indians increased from the pre-linkage rate of 386.3 per 100,000 to the post-linkage rate of 471.7 per 100,000, a statistically significant increase. The post-linkage rate was over twice the comparable Surveillance Epidemiology and End Results (SEER) national rate among American Indians at 233.6 per 100,000. Post-linkage American Indian incidence rates for male colorectal and female lung cancers were higher than those for the state average. CONCLUSIONS: In contrast to earlier data, the linkage results show that American Indians had similar cancer incidence compared to the general population in Wisconsin, and over twice as high as national SEER American Indian rates. Post-linkage rates resulted in more accurate site-specific and geographically focused cancer incidence rates to help target the national and state priorities of addressing disparities among American Indians.