Regional Differences and Tribal Use of American Indian/Alaska Native Cancer Data in the Pacific Northwest

Hoopes, Megan; Petersen, Paneen; Vinson, Éric; Lopez, Kerri

doi:10.1007/s13187-012-0325-4

Cited by 15 publications

(33 citation statements)

References 15 publications

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“…Racial or ethnic minority individuals are underrepresented in cancer registries mainly due to racial misclassification, resulting from incorrect or missing racial information on medical forms. For AI/AN individuals, this misclassification is particularly high . To improve accurate classification, data linkage is a technique that matches multiple records from different sources that identify the same person.…”

Section: Introductionmentioning

confidence: 99%

Disparities of cancer incidence in Michigan's American Indians: Spotlight on breast cancer

Roen

Copeland

Pinagtore

et al. 2014

Cancer

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Introduction In American Indians (AI), cancer is a leading cause of mortality, yet their disease burden is not fully understood due to unaddressed racial misclassification in cancer registries. This study describes cancer trends among AIs in Michigan, focusing on breast cancer, in a linked data set of Indian Health Service (IHS), tribal and state cancer registry data adjusted for misclassification. Methods AI status was based upon reported race and linkage to IHS data and tribal registries. Data with complete linkage on all incident cancer cases in Michigan from 1995-2004 was used to calculate age-standardized incidence estimates for invasive all-site and female breast cancers stratified by racial group. For female breast cancers, stage and age-specific incidence and percent distributions of early versus late-stage cancers and age of diagnosis were calculated. Results Over 50% of all AI cases were identified through IHS and/or tribal linkage. In the linked data, AIs had the lowest rates of all-sites and breast cancer. For breast cancers, AI women had a greater late-stage cancer burden and a younger mean age of diagnosis as compared to whites. Although the age-specific rate for whites was greater than for AI women in nearly all age groups, the difference in hazard ratio increased with increasing age. Conclusions Our state-specific information will help formulate effective, tailored cancer prevention strategies to this population in Michigan. The data linkages used in our study are crucial for generating accurate rates and can be effective in addressing misclassification of the AI population and formulating cancer prevention strategies for AI nationwide.

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Section: Introductionmentioning

confidence: 99%

Disparities of cancer incidence in Michigan's American Indians: Spotlight on breast cancer

Roen

Copeland

Pinagtore

et al. 2014

Cancer

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“…Job-based or other private health insurances are used by about half (49%) of AI/AN people, while 35% of AI/ANs are uninsured [49]. Many tribal systems lack electronic medical records [51], and of these systems very few are linked electronically for exchange of information. When possible, linking health data to other registries or tribal documents is tedious and time consuming and may provide another step and opportunity for misclassification.…”

Section: Misclassificationmentioning

confidence: 99%

Blood Politics, Ethnic Identity, and Racial Misclassification among American Indians and Alaska Natives

Haozous

Strickland

Palacios³

et al. 2014

Journal of Environmental and Public Health

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Misclassification of race in medical and mortality records has long been documented as an issue in American Indian/Alaska Native data. Yet, little has been shared in a cohesive narrative which outlines why misclassification of American Indian/Alaska Native identity occurs. The purpose of this paper is to provide a summary of the current state of the science in racial misclassification among American Indians and Alaska Natives. We also provide a historical context on the importance of this problem and describe the ongoing political processes that both affect racial misclassification and contribute to the context of American Indian and Alaska Native identity.

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“…2,4–14 A simple and economically feasible method to potentially improve the validity of race/ethnicity from RCA is the use of a Spanish surname list. 15 …”

Section: Introductionmentioning

confidence: 99%

Validity of Race, Ethnicity, and National Origin in Population-based Cancer Registries and Rapid Case Ascertainment Enhanced With a Spanish Surname List

et al. 2016

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Background Accurate information regarding race, ethnicity, and national origins is critical for identifying disparities in the cancer burden. Objectives To examine the use of a Spanish surname list to improve the quality of race-related information obtained from rapid case ascertainment (RCA) and to estimate the accuracy of race-related information obtained from cancer registry records collected by routine reporting. Subjects . Self-reported survey responses of 3,954 participants from California enrolled in the Cancer Care Outcomes Research and Surveillance Consortium (CanCORS). Measures Sensitivity, specificity, positive predictive value (PPV), and percent agreement. We employed logistic regression to identify predictors of under-reporting and over-reporting of a race/ethnicity. Results Use of the Spanish surname list increased the sensitivity of RCA for Latino ethnicity from 37% to 83%. Sensitivity for cancer registry records collected by routine reporting was ≥95% for Whites, Blacks, and Asians, and specificity was high for all groups (86–100%). However, patterns of misclassification by race/ethnicity were found that could lead to biased cancer statistics for specific race/ethnicities. Discordance between self- and registry-reported race/ethnicity was more likely for women, Latinos, and Asians. Conclusion Methods to improve race and ethnicity data, such as using Spanish surnames in RCA and instituting data collection guidelines for hospitals, are needed to ensure minorities are accurately represented in clinical and epidemiological research.

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Regional Differences and Tribal Use of American Indian/Alaska Native Cancer Data in the Pacific Northwest

Cited by 15 publications

References 15 publications

Disparities of cancer incidence in Michigan's American Indians: Spotlight on breast cancer

Disparities of cancer incidence in Michigan's American Indians: Spotlight on breast cancer

Blood Politics, Ethnic Identity, and Racial Misclassification among American Indians and Alaska Natives

Validity of Race, Ethnicity, and National Origin in Population-based Cancer Registries and Rapid Case Ascertainment Enhanced With a Spanish Surname List

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