Quality and utility of cancer registry data on race, ethnicity, birthplace, and language
The SEER cancer registries routinely collect information on cancer patients that include race, ethnicity and birthplace. Data on race and ethnicity are used for the calculation of incidence and mortality rates and for public health planning. Birthplace information may further help to explain differences in disease incidence and mortality within a particular racial/ethnic group by serving as a marker of migrant status. However, as these data in the cancer registry are derived from the patient's medical record or the death certificate--which is often based on a subjective assessment made by hospital personnel rather than being obtained directly from the patient--they may be subject to some degree of misclassification. In addition to the routinely collected race, ethnicity, and birthplace data, information on patients' primary language may be additionally useful in the surveillance of immigrant groups, and may be used to identify groups for which language barriers may be a source of disparities in cancer incidence and outcomes. The importance of language was recently recognized by the enactment of California Assembly Bill 800, effective January 2006, which requires that all health facilities include a patient's principal spoken language on the patient's health records.
The purpose of this series of projects is to assess the quality and utility of cancer registry data on race, ethnicity, birthplace, and language by: 1) comparing registry data to self-report data, which have been obtained from investigator-initiated interview studies; 2) examining hospital policies and practices in the collection of these data; and 3) determining the availability and accuracy of patient primary language information.
Studies:
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Accuracy of data on race, ethnicity, and birthplace in the cancer registry
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Hospital policies and practices in the collection of patient data on race, ethnicity, and birthplace
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Patient primary language availability and accuracy in the medical record
NCCC Principal Investigator: Scarlett L. Gomez, Ph.D.
Funding Source: Surveillance, Epidemiology, and End Results (SEER) Program, Special Studies mechanism
Publications:
Gomez SL, Glaser SL. Misclassification of race/ethnicity in a population-based cancer registry. Cancer Causes and Control 2006;17:771-782.
Gomez SL, Glaser SL. Quality of birthplace data from the cancer registry for Hispanics. Cancer Causes and Control 2005;16(6):713-723.
Gomez SL, Kelsey JL, Glaser SL, Lee MM, Sidney S. Inconsistencies between self-reported ethnicity and ethnicity recorded in a health maintenance organization. Annals of Epidemiol 2005; 15(1):71-79.
Gomez SL, Glaser SL, Kelsey JL, Lee MM. Bias in completeness of birthplace data for Asian groups in a population-based cancer registry. Cancer Causes and Control 2004; 15:243-253.
Gomez SL, Glaser SL. Accuracy of birthplace information from death certificates for Asians and Hispanics. Ethnicity and Disease 2004; 14:292-295.
Gomez SL, Le GM, West DW, Satariano WA, O'Connor L. Hospital policy and practice on the collection of data on race/ethnicity and birthplace. Amer J of Public Health 2003;93:1685-8.
Lin SS, Clarke CA, O'Malley CD, Le GM. Studying cancer incidence and outcomes in immigrants: methodological concerns. Amer J Public Health 2002 Nov; 92(11):1757-9.
Lin SS, O'Malley CD, Clarke CA, Le GM. Birthplace and survival among Asian women diagnosed with breast cancer in cancer registry data: the impact of selection bias (letter). Int J Epidemiol 2002; 4:511-513.
Lin SS, O'Malley CO, Lui SW. Publication: Lin SS, O'Malley CO, Lui SW. Factors associated with missing birthplace information in a population-based cancer registry. Ethnicity and Disease 2001; 11(4):598-605. |
