Establishing reliable information regarding mortality of and specific health risks to members of ethnic groups is currently an important focus of national public health.34
Our results indicated that race/ethnicity information reported on death certificates and medical records in this bi-ethnic, non-immigrant U.S. population is largely consistent with that of self-report, with accuracy reaching 97% and 96% respectively. There should be a reasonable degree of confidence in the accuracy of ethnic-specific mortality statistics in this population derived from these data. Although concordance was high, it did not reach 100%, with 5% of MA individuals misclassified as NHW on their death certificate and 3% on their medical record.
Comparison of our findings with those of other studies, while useful, is challenging due to the different populations studied and approaches employed. Sorlie and colleagues6
used race/ethnicity data from the Current Population Surveys as the gold standard and compared this to race/ethnicity on the death certificate. They estimated agreement of 89.7% for any Hispanic designation and 84.9% for Hispanics of Mexican origin. Our estimate for sensitivity, which was calculated in the same manner, was higher at 95.4%. Poe and colleagues used a counter approach and specified the death certificate as the gold standard; they estimated agreement at 98.9% for the reporting of Hispanic ethnicity in the National Mortality Followback Survey.5
Although not presented as part of our results because we believed self-report should be considered the gold standard, our data if recalculated in this manner are in line with the findings of Poe and colleagues at 98.4%. Other work on the misclassification of race/ethnicity on the death certificate has addressed the issue from different perspectives, including inconsistencies with the reporting of race/ethnicity on birth and death records;8,10,15
errors in the recording of race on death certificates of American Indians, Alaskan Natives, and Asian Americans;7,9,13,35,36
inconsistencies between race-ethnicity on death certificates and AIDS surveillance data;25
and errors in the recording of race on death certificates of multiple-race individuals.11
Thus, direct comparison with these studies is not warranted.
The discrepancy between our findings and those of Sorlie and colleagues6
is perhaps due to the different populations studied and a trend over time in the growth of the Hispanic American population and more specifically the MA population. The demographic composition of Nueces County is more than 50% MA, as opposed to previous work conducted using national population-based samples,5,6,12
which included smaller proportions of Hispanics. Indeed, it is likely that the individuals recording race/ethnicity information in this community were more familiar with individuals of Hispanic ethnicity or were themselves Hispanic. Research in the U.S. American Indian population has suggested that accuracy of race coding on death certificates is improved in geographic areas more heavily populated by American Indians10,36
or with a higher percentage of American Indian ancestry.7
Although these data are based on a different race/ethnic minority group, such a trend is likely in other geographic regions with high minority representation.
Results of the present study suggest that there is still room for improvement in the recording of race and ethnicity data on medical records and death certificates, even in this population that is more than 50% MA. Funeral directors could benefit from training on completion of death certificates, including information about race/ethnicity classification and the importance of accurately reporting race/ethnicity data on these documents. In a national survey of funeral directors, 52% of respondents indicated that they had never had formal training on completion of death certificates.37
Further, when asked if there were particular items on the death certificate that they had difficulty with, 26% of funeral directors indicated that recording of race information was problematic because of “inadequate criteria for judgment/unclear” and “people wonder why it is necessary.” Education and training would not only encourage funeral directors to be more diligent in the completion of these data, but would also provide them with the information they need to better explain the importance of this information to family members from whom they acquire the information. Indeed, some have suggested that mortuary personnel collect race and ethnicity information at the time of burial prearrangements to avoid emotional circumstances, and in many cases, to collect this information from the individuals themselves.12
Recording of race/ethnicity solely from assumptions, whether by familiarity with the family or surname, should be discouraged in the profession, as it is likely to lead to mistakes. Similar suggestions could be made for the recording of demographic data in medical records in addition to the establishment of structured protocols for collecting these data. Hospital staff should also be informed of the importance of accurately and completely recording race/ethnicity information.
The present study has a number of strengths. First, utilization of the BASIC study data allowed for analysis of a large sample of 480 individuals. Whereas most previous studies have focused solely on death certificate information, this study had the benefit of availability of self-report information in addition to data from both the death certificate and medical record, allowing for comparisons of all sources of demographic data. Also, whereas most previous studies examined ethnicity data from the nation as a whole, combining all Hispanic subgroups, the present study specifically examined a large group of Mexican Americans, an important and rapidly expanding subgroup in the U.S. population. Finally, contrary to most studies of the Hispanic population, the area studied was a non-immigrant community. Thus, the present study is more representative of the future distribution of minority groups in this country, with fewer being first-generation immigrants, and more being U.S.-born.
This study, however, has limitations, primarily with generalizability. It was conducted in one county in Texas with a large population of only one of the several Hispanic subgroups in the U.S. Therefore, the hospital employees and mortuary personnel recording race/ethnicity data on the medical records and death certificates are likely to be highly familiar with individuals of Hispanic ethnicity, and possibly Hispanic themselves. As a result, the 96% to 97% concordance found in this study is likely to be higher than would be found in other parts of the country with a smaller Hispanic population and possibly with different Hispanic subgroups. In addition, this study examined a population of patients 45 years of age and greater with suspected stroke, so caution is advised regarding generalizability to the general population of Hispanic individuals. Finally, a large number of interviews were conducted with proxy subjects, though the vast majority was with immediate family members and the percent agreement between the different sources for race/ethnic classification did not vary with the use of proxy subjects.
In conclusion, results indicated that Hispanic designation recorded on death certificates and medical records in this community was largely consistent with that of self-report. Similar studies in other multi-racial, multi-ethnic communities should be conducted to confirm and generalize these results.