Vernellia R. Randall
Why disaggregate health and health care data based on race?
Because Race Matters.
Race matters because it is an imperfect proxy for racism and racial
Clearly, race doesn’t matter as a genetic concept. The idea that
race is important because of a notion of genetic homogeneity has been
thoroughly debunked. Furthermore, race, as a scientific
concept, never rested on firm scientific foundation. Biologically,
there are no pure, distinct races. Which is not to say that there may
not be bio-chemical differences among individuals. Some of those
differences might be closely associated with groups that we categorize
by race. For instance, in a study of 1,256 female and 1,603 male patients,
women had more rapid decreases in CD4+ T cell counts than men and
non-whites had slower decreases than whites.[1, 13]
If race does not distinguish humans from one another genetically,
then why does it matter? Several studies document that "race"
has been shaped by cultural, political, ideological and legal functions
in society. That is, "race" is a social construct; something
that has meaning only because the society gives it meaning. Such
construct is no less powerful than a biological construct. Once society
conveys meaning that meaning has impact and consequences.
Race matters because society engages in racism and racial
discrimination which affects health status and health care.
Race Matters in Health Status.
There are many examples of disparities in health status between
racial/ethnic groups. In the United Kingdom, Black people tend to have a
greater incidence of high blood pressure than white people. In
Brazil, the infant mortality rate for children under 12 months is 62.3
per 1000 for Black and Brown children compared to 37.3 for White.
The life expectancy in the United States is 26 years longer than
life expectancy in Haiti. In Australia, life expectancy
at birth is 56.9 years for Indigenous men and 61.7 years for Indigenous
women, compared with 75.2 years and 81.1 years, respectively, for
non-Indigenous men and women. The American Indian death
rate from diabetes is 27.8 per 100,000, compared with 7.3 for
Whites--380 percent higher. In the United States,
Black women are three times more likely to die while pregnant than White
women, and four times more likely to die in child birth. The maternal
mortality rate for Hispanic women is 23 percent higher than for
non-Hispanic women. Disparity occurs at all income-levels. The
mortality stratum for all of Africa is either high or very high Child
/Adult, while all of Europe is either low or very low child and most of
Europe is low or very low adult. Only Estonia, Hungary, Kazakhstan,
Lithuania, Moldova, Russia and Ukraine have high adult. By
any standard, "racially disadvantaged" groups fail to have
"a state of complete physical, mental and social well-being".
The current health disparity is the cumulative result of both past
and current racism. In general "racially disadvantaged" groups
have less education and fewer educational opportunities. Further,
"racially disadvantaged" groups are disproportionately
homeless and have significantly poorer housing options. In addition,
"racially disadvantaged" groups disproportionately work in
lowest pay and high health risk occupations. However, even when you
control for income or wealth, racism and racial discrimination continues
to exist and thus, race matters in health status.[26,21]
Race Matters in Health Care.
Race matters in health care because institutional racism establishes
separate and independent barriers. Institutional racism refers to the
denial of opportunities and equal rights to individuals and groups that
results from the normal operations of the institutions in a society.
"Those established laws, customs, practices which systematically
reflect and produce racial inequalities. . .If racist consequences
accrue to institutional laws, customs, or practices, the institution is
racist whether or not the individuals maintaining those practices have
Thus, racial discrimination can occur in institutions without any
specific intent by any specific individual to deprive others. In fact,
institutional discrimination can occur without any specific individual
being aware that others are being deprived. While data on
institutional racism in health care is scarce, it does exist.
For instance, in the United Kingdom, Caribbean men are less likely to
be registered with a general practitioner than white. In
Yugoslavia, on average, 13% of Roma People in Belgrade are not
registered in the regular health care system. In Nepal
among the Dalits, birth control is unknown and unavailable.
Perhaps the most comprehensive data about institutional racism in
health care comes from the United States. The research from the United
States clearly demonstrates that within a country, racial barriers to
quality health care may manifest themselves in a number of ways: Lack of
Economic Access to Health Care; Barriers to Hospitals and Health Care
Institutions; Barriers to Physicians and Other Providers;
Discriminatory Policies and Practices; Lack of Language and
Culturally Competent Care; Inadequate Inclusion in Health Care
Research; Commercialization of Health Care, and the Disintegration of
Traditional Medicine. However, the most well researched racial barrier
to quality health care is Disparities in Medical Treatment. For
instance, in the United States, Blacks are more likely to require health
care services than Whites, but are less likely to receive them.
Studies have shown racial disparity in both quality and
availability of treatment in AIDS, cardiology, cardiac
surgery, kidney disease, organ
transplantation, internal medicine, obstetrics,
prescription drugs, treatment for mental illness,
and hospital care.
In the United States, Whites are three times more likely to undergo
bypass surgery than non-Whites. Non-White patients
seeking admission to nursing homes experience longer delays before
placement than White patients. Doctors are less likely to
recommend breast cancer screening for Hispanic women than for White
women. Non-White pneumonia patients receive fewer
hospital services than White patients. Poor urban Black
and Hispanic neighborhoods average 24 physicians per 100,000 people,
compared to 69 physicians per 100,000 for poor White communities.
In the United States, there are marked differences in time spent,
quality of care and quantity of doctor’s office visits between Whites
and Blacks. Even when controlling for income, education, and ability to
pay, Whites are more likely to receive more and more thorough diagnostic
work and better treatment and care than people of color. Furthermore,
researchers have concluded that doctors are less aggressive when
treating patients from "racially disadvantaged" groups.
At least one study indicated a combined affect of race and gender
resulting in significantly different health care for Black women than
white women and men.
Certainly, difference in treatment is based on a number of different
factors including clinical characteristics, income, medical or
biological differences. Nevertheless, race plays an independent role,
and of all the influences on the health of "racially
disadvantaged" groups, it is imperative that health care systems be
free of racial discrimination - both individual and institutional.
Race Matters because discrimination based on perceived racial
grouping continues to exist.
Disaggregation of Data and Racial Discrimination
Collecting health status and health care data disaggregated based on
race may make racism and racial discrimination in health care more
visible, but it is not without its difficulties. First, there may be
measurement issue due to observer bias that can result in undercounting.
That is, where the race is reported by an observer rather than the
person or a relative, there can be significant misclassification. For
instance, in a study in Oklahoma 28% of the Indian infants were
misclassified as another race on the death certificate.[15,9]
Second, there are reliability issues because of changes in racial
identity. For instance, between 1960 and 1990 there was a
six-fold increase in the American Indian population that cannot be
explained by either biological growth or by migration.
Third, there are a number of definitional problems: how to classify
multiracial person; what groups and subgroups to define; and the lack of
uniformed classification. Fourth, some populations are
difficult to count which results in a census undercount and an inflated
denominator in rates. Finally, other issues can include
the small size of some of the population groups, geographic dispersement.
Given the array of potential issues, some researchers have argued
that health data should not be disaggregated by race. It
could be argued that the use of race in health data promotes and
maintain the view that race is a biological concept. Or that racial
categorizations perpetuates and encourages racial fragmentation. Such
views see potential for harm from the use of race.
However, there are a number of important and compelling reasons for
disaggregating health status and health care data by race. First, the
use of race is not the cause of racism but the result of racism. That
is, groups have been discriminated against others on the based of color;
established hierarchy and superiority based on color; and race is the
terminology used to capture this situation. Consequently, racism and
racial discrimination will continue to exist (that is discrimination
based on color) even if terminology change or cease to exist. For
instance, even though race data is not collected in the European Union
in the same way as it is in the United States, racism and racial
discrimination continues to exist as a worldwide problem. Even when you
control for socioeconomic status, health status and health care
differentials continue to exist.
Second, racism and racial discrimination has implication for every
institution and social practice. Health status is impacted by racial
discrimination in housing, employment, environment, education and other
Third, calls to not disaggregate data ignores the power and status
differentials that exist among all racial groups. This
point is illustrated when one considers the disproportionate percentage
of racially disadvantaged who are poor.
Fourth, as long as some groups continue to experience discrimination,
it is important to monitor their well being.
Fifth, to fully understand the health status of all individuals
as well as to recognize the barriers they face in obtaining quality
health care, it is important to collect the most complete data on
"racially disadvantaged" groups, and "sub-groups".
The lack of a uniform data collection method makes obtaining an
accurate and specific description of race discrimination in health care
difficult, if not impossible. Such data collection has to include
collecting data on provider and institutional behavior.
"Although not useful as a biological category, race has been and
is likely to continue to be an important social category. It is what
sociologists call a master status–a central determinant of social
identity and obligations, as well as of access to societal rewards and
resources. From our earliest health records, race has been an
empirically robust predictor of variations in morbidity and mortality.
Collecting the appropriate data on race can facilitate ongoing
monitoring of the magnitude of differentials, enhanced understanding of
their causes and the development of effective interventions to address
Race Matters because racism and racial discrimination matters.
Disaggregating data based on race is important because it helps to
make the impact of racism and racial discrimination visible and, thus
allows us to address the root problem.
- Anastos, K., et. al., Association of race and gender with HIV-1
RNA levels and immunologic progression, 24 Journal of Acquired
Immune Deficiency Syndromes 218-227 (July, 2000).
- Australian Bureau of Statistics. Health and welfare of Australia's
Aboriginal and Torres Strait Islander peoples. Canberra: ABS, 1999.
(Catalogue No. 4704.0.)
- Bagley, C., A Plea for ignoring Race and Including Insured status
in American Research Reports on Social Science and Medicine, 40
Social Science Medicine 1017-1019 (1995).
- Bennett, C., Racial Differences in Care among Hospitalized
Patients with Pneumocystis Carinii Pneumonia, 55 Archives of
Internal Medicine 1586 (August 1995)
- Dalit in Nepal and Alternative Report for WCAR-2001, Jana Uttha
Pratisthan (April 2001)
- De Noon, D.J., Aids Care Not Color Blind, Aids Weekly 2
(Sept. 11 1995)
- Dos Palmares, Escrito Nacional Zumbi, Race Inequalities in Brazil
- Eggers, P.W., Effect of Transplantation on the Medicare
End-stage Renal Disease Program, 318 New England Journal of
Medicine 223-29 (1988).
- Frost, F., et. al., Racial Misclassification of Native Americans
in Surveillance Epidemiology and end results cancer Registry, 84
Journal of National Cancer Institute 957-962 (1992)
- Gaston, R.S., et. al., Racial Equity in Renal Transplantation,
270 Journal of American Medical Association 1352 (1993)
- Gornick, M.E., et. al., Effects of Race and Income on Mortality
and Use of Services among Medicare Beneficiaries, 335 New
England Journal of Medicine. 791 (1996)
- Hahn, B.A, Children's Health: Racial and Ethnic Differences in
the Use of Prescription Medications, 95 Pediatrics 727 (1995)
- Immunology Racial Variation Found in Rate of CD4 Depletion in
HIV-1, AIDS Weekly Plus (September 23, 1996)
- Jones, J.M., Prejudice and Racism (1972)
- Kennedy, R. D. and Deapen, R.E., Differences between Oklahoma and
Indian Infant Mortality and other Races, 106 Public Health Report
- Kreiger, N., "Embodying Inequality: A review of Concepts,
Measures and Methods for studying Health Consequences of
Discrimination", 29 International Journal of Health Services
- Maynard, C. et. al., Blacks in the Coronary Artery Surgery
Study: Race and Clinical Decision Making, 76 American Journal of
Public Health 1446 (1986)
- Nazroo, J.Y. , Health and Health Services, in Ethnic Minorities in
Britain: Diversity and Disadvantage, Tariq Modood and Richard
Berthhoud, et. al. Editors, p. 224-258 (London, England 1997)
- Randall, V.R., Racist Health Care: Reforming an Unjust Health
Care System to Meet The Needs of African-Americans, 3
Health Matrix 127-194 (Spring, 1993).
- Report of the United States Commission on Civil Rights, The Health
Care Challenge: Acknowledging Disparity, Confronting Discrimination,
and Ensuring Equality , Volume I and Volume II (September 1999).
- Rubin, S. J., Economic and Social Human Rights and the New
International Economic Order, 1 American University Journal of
International Law & Policy 67 (1986)
- Schulman, K.A, et. al., The Effect of Race and Sex on
Physicians' Recommendations for Cardiac Catheterization,
340 New England Journal of Medicine 618 (Feb. 25, 1999)
- Survey, " The Roma from Belgrade Settlements", Oxfam,,
GB office in Federal Republic of Yugoslavia (April 2001).
- Torkington, N.P.K., Black Health : A Political Issue, p. 50
(Liverpool, England 1991)
- Ture, K. and Hamilton, C., Black Power: The Politics of Liberation
- United Nations Development Programme, Human Development Report,
29- 30 (1998);
- Wade, J.C., Institutional Racism: An Analysis of the Mental
Health System, 63 American Journal of Orthopsychiatry 536
- Wenneker, M.B. and Epstein, A.M., Racial Inequalities in the Use
of Procedures for Patients with Ischemic Heart Disease in
Massachusetts, 261 Journal of American Medical Association 253
- Williams, D.R., Race and Health: Basic Questions, Emerging
Directions, 7 Ann. Epidemiol 322-333 (1997).
- Williams, D.R., Race/Ethnicity and Socioeconomic Status:
Measurement and Methodological Issues, 26(3) International Journal
of Health Services 483-505 (1996).
- World Health Organization Const. Preamble (1946).
- World Health Organization, The World Health Report 2000 (2000)
- Yergan, J., et al., Relationship Between Patient Race and the
Intensity of Hospital Services, 25 Medical Care 592 (1987)