Obstruction of Valid Race/Ethnicity Data Acquisition by Current Data Collection Instruments

Abstract

Methods of collecting race/ethnicity data affect the validity of conclusions based on them as do other factors such as lack of consensus and inadequate definitions for terminology; and misclassification or miscounting of patients. Current data collection instruments do not identify mixed heritage. We propose improving data measurement and collection by including a quantified multiracial/multiethnic heritage category for persons of mixed heritage; a don't know category; and a refuse to reveal category. The resulting problems affect all uses of racial and ethnic data, including health care provision, research, and health planning. More precise race/ ethnicity categories should be encouraged by such means as a 16-category checklist (with instructions to check all which apply) currently in development. The Methods section of all clinical, epidemiologic, and pharmacologic reports should include descriptions of racial measurement and reasons for including or excluding clearly defined populations.

Keywords

Data Validity - Data Collection - Mixed Heritage - Data Interpretation - Ethnic Group - Racial Stocks

• REFERENCES

• 1 Schulman KA, Rubenstein LE, Chesley FD, Eisenberg JM. The roles of race and socioeconomic factors in health services research. Health Serv Res 1995; 30 (1 Pt 2) 179-95.
• 2 LaVeist TA. Beyond dummy variables and sample selection: what health services researchers ought to know about race as a variable. Health Serv Res 1994; 29: 1-16.
• 3 Use of Race and Ethnicity in Public Health Surveillance. Summary of the CDC/ATSDR Workshop, Atlanta GA, March 1993. MMWR Morb Mortal Wkly Rep. 1993 June 25;42(RR-10) 1-17.
• 4 Lillie-Blanton M, Hoffman SC. Conducting an assessment of health needs and resources in a racial/ethnic minority community. Health Serv Res 1995; 30 (1 Pt 2) 225-36.
• 5 Shields PG. Pharmacogenetics: detecting sensitive populations. Environ Health Perspect 1994; 102 Suppl 11 81-7.
• 6 Lin HJ, Han C-Y, Bernstein DA, Hsiao W, Lin BK, Hardy S. Ethnic distribution of the glutathione transferase Mu 1-1 (GSTM1) null genotype in 1473 individuals and applications to bladder cancer susceptibility. Carcinogenesis 1994; 15: 1077-81.
• 7 DeMott K. Kaiser Permanente develops genetic testing guidelines. Report on Medical Guidelines & Outcomes Research. 1996 Apr 18 7. (8) 1-2 12.
• 8 Whitten CF. The fight continues. Nurs Allied Health J Minorities 1994; Fall-Winter 2 (2) 32-4.
• 9 Salerno E. Race, culture, and medications. J Emerg Nurs 1995; 21: 560-2.
• 10 Hussey G, Hitchcock J, Schaaf H, Coetzee G, Hanslo D, Van Schalkwyke E, et al. Epidemiology of invasive Haemophilus influenzae infections in Cape Town, South Africa. Ann Trop Paediatr 1994; 14: 97-103.
• 11 U.S. Standard Certificate of Death. 1989 Revision.
• 12 Hahn RA, Stroup DF. Race and ethnicity in public health surveillance: criteria for the scientific use of social categories. Public Health Rep 1994; 109: 7-15.
• 13 Nickens HW. The role of race/ethnicity and social class in minority health status. Health Serv Res 1995; 30 (1 Pt 2) 151-62.
• 14 Fontham ETH, Ruiz B, Perez A, Hunter F, Correa P. Determinants of Helicobacter pylori infection and chronic gastritis. Am J Gastroenterol 1995; 90: 1094-101.
• 15 Sanghavi DM. Epidemiology of sudden infant death syndrome (SIDS) for Kentucky infants born in 1990: maternal, prenatal, and perinatal risk factors. J Ky Med Assoc 1995; 937: 286-90.
• 16 Orden SR, Liu K, Ruth KJ, Jacobs DR Jr, Bild DE, Serwitz J. Multiple social roles and blood pressure of black and white women: the CARDIA study. J Women's Health 1995; 4: 281-91.
• 17 U.S. Department of Health and Human Services, Agency for Health Care Policy and Research Provider Studies Research Note 24. Trends in hospital diagnoses for black patients and white patients: 1980-87. Rock-ville, MD: Jun 1995
• 18 Multiracial Americans rally in D.C.: demonstrators push Census Bureau for own category in 2000. San Jose Mercury News. 1996 July 21; Sect A 15 (col. 1-4).
• 19 Beech H. Don't you dare list them as “other”: multiracial Americans seek full recognition. U.S. News Online. Apr 8 1996