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At the Intersection of Health, Health Care and Policy

Cite this article as:


Paul L. Hebert, Jane E. Sisk and Elizabeth A. Howell
When Does A Difference Become A Disparity? Conceptualizing Racial And Ethnic
Disparities In Health
Health Affairs, 27, no.2 (2008):374-382

doi: 10.1377/hlthaff.27.2.374

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When Does A Difference


Become A Disparity?
Conceptualizing Racial And
Ethnic Disparities In Health
Having an agreed-upon conceptual definition of a disparity is
essential to measuring progress toward eliminating it.
by Paul L. Hebert, Jane E. Sisk, and Elizabeth A. Howell

ABSTRACT: Definitions of racial and ethnic disparities fall along a continuum from differ-
ences with little connotation of being unjust to those that result from overt discrimination.
Where along this continuum one decides that a racial difference becomes a disparity is
subjective, but the magnitude of the injustice is generally proportional to how much control
a person is perceived to have over the cause of the difference in health. The degree to
which one sees environmental factors and social context as shaping choices has important
implications for the measurement of disparities and ultimately for directing efforts to elimi-
nate them. [Health Affairs 27, no. 2 (2008): 374–382; 10.1377/hlthaff.27.2.374]

P
o l i c y m a k e r s h av e l o n g k n o w n that racial and ethnic differences in
health exist, and the federal government has made eliminating disparities a
high priority. But there is little consensus on what constitutes a disparity, or
when a difference between two groups should be given the more charged term of
disparity. To many, disparity implies an inequity or an injustice rather than a simple
inequality. Determining when a difference becomes a disparity may be problem-
atic because a disparity is not measured directly, but rather as a residual or a differ-
ence between two groups, often only after other factors that might contribute to
that difference have been statistically controlled for. Because a person’s “race” is
correlated with a large number of such factors, including his or her socioeconomic
position and living conditions, there are many decisions to make. Although some
factors are fairly obvious to control for, such as differences in age when measuring
mortality, and not to control for, such as measures of overt racism, there is a large
gray area in between. The size of the disparity, or whether one exists at all, de-
pends critically on what factors in this gray area are included in a definition of a
disparity. This definition should reflect how one conceptualizes the complex role

Paul Hebert (paul.hebert@mssm.edu) and Elizabeth Howell are assistant professors in the Mount Sinai School of
Medicine in New York City. Jane Sisk is a professor there, on leave to the National Center for Health Statistics.

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DOI 10.1377/hlthaff.27.2.374 ©2008 Project HOPE–The People-to-People Health Foundation, Inc.

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that race and ethnicity play in influencing health.


This conceptualization has important consequences for health policy. Al-
though many documented shortfalls in health exist in the United States, the ones
that result from an inequity garner and deserve special attention. Having a consis-
tent and reasonable definition of a disparity would help focus research and policy
on areas of greatest need for redress, but definitions vary considerably across fed-
eral and international institutions.
The purpose of this paper is to discuss conceptual issues regarding the defini-
tion of racial/ethnic health disparities and the implications of these issues for measure-
ment of disparities. We argue that health-related factors contribute to a disparity
if they lie along a causal pathway by which race/ethnicity affects health and if they
have their roots in an injustice. In this paper we describe defining racial/ethnic health
disparities, not finding the causes of the disparities. This is an important distinction
because the issues for finding causes are very different and are described else-
where.1 In addition, we focus on disparities in health generally, rather than dispar-
ities in health care, which has some unique issues.2
Although race can be viewed as a biological construct, in which case definitions
of disparities involve identifying genes for medical conditions that are more preva-
lent in nonwhites than in whites, we adopt the view of race as a social construct.3
Race is a social classification based on phenotype and a marker for exposure to so-
cial factors that can influence health, including socioeconomic position, lifestyle
habits, and use of health care.4 Ethnicity is also a social construct referring to the
sharing of a culture, including ancestry, language, religion, and traditions.5 Eth-
nicity is thought to be separate from race, although to the extent one views both as
social constructs, there can be overlap. We refer to them jointly as race/ethnicity.

Definitions Used By Various Organizations


Reports of the U.S. government, Institute of Medicine (IOM), and World
Health Organization (WHO) have offered explicit definitions of disparities in
health or health care. Common to these different definitions is the normative con-
cept that something is wrong, that it should be improved, and often that it is ineq-
uitable or unjust.
n AHRQ’s definition. For its annual National Healthcare Disparities Report, the
Agency for Healthcare Research and Quality (AHRQ) defines disparities as any dif-
ferences among populations that are statistically significant and differ from the ref-
erence group by at least 10 percent.6 Often, no attempt is made to adjust for differ-
ences in age or sex distributions by race/ethnicity. Although disparities are
expressed as differences, the report conveys the impression that differences are un-
acceptable. The report, for example, limits its quality-of-care measures to those with
rigorous evidence to support their appropriateness and comments that its publica-
tion supports the administration’s goal to eliminate inequities in health care.
n The IOM’s definition. In contrast, the IOM 2003 report on disparities, Unequal

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Treatment, defined disparities as “racial or ethnic differences in the quality of health-


care that are not due to access-related factors or clinical needs, preferences, and ap-
propriateness of intervention.”7 This narrower definition conceived of disparities as
a residual, after taking into account factors that the IOM study committee consid-
ered acceptable reasons for differences. This definition reflects in part the fact that
the IOM was charged by Congress to look for disparities unrelated to access; how-
ever, the committee concluded that redressing racial/ethnic disparities would re-
quire addressing not only health care access problems but also inequality in socio-
economic status (SES) and behavioral risk factors.
n The WHO’s definition. The WHO defines disparities as “differences in health
which are not only unnecessary and avoidable but, in addition, are considered unfair
and unjust.”8 Whether or not a health difference is considered unfair depends on
whether or not people chose the situations that resulted in poor health. As exam-
ples, poor populations may have little choice about living in unsafe and unhealthy
neighborhoods, while differences in sports injuries by certain groups would not be
considered unfair. The stated policy implication of this definition is not to eliminate
all health differences, but to reduce or eliminate those resulting from factors both
avoidable and unfair.

Conceptualizing Disparities: A Thought Experiment


While the AHRQ and IOM reports developed measures of disparity that fol-
lowed from explicit definitions, most disparities research does not start with a
conceptual definition. Rather, researchers measure disparities by statistically ad-
justing racial difference in health for various factors that might contribute to that
difference. The longer the list of factors is, the more strongly an investigator holds
to the claim that a disparity exists. Although this has some intuitive appeal, a pro-
cedure that is better grounded in a conceptual model of disparities is needed.
One way to conceptualize disparities is through a thought experiment in which
we imagine a subject and consider how his health would be different if he were to
relive his life to date as a different race. As designers of this experiment, we can
dictate that some things about the subject are held constant throughout the ex-
periment and allow others to change. At the two extremes, we would certainly
want to hold constant some unavoidable facts of his life, such as sex, birth year,
and genetic predisposition to some diseases not associated with race. At the other
extreme, there are aspects of his counterfactual life that we would certainly allow
to change, such as his outward appearance of race and other people’s malevolent
reactions to it. Between these two extremes is a gray area where a definition of dis-
parities lies. To define a disparity in the gray area, we must make two critical as-
sumptions. First, we must decide what health-related factors would change with
a change in race. Second, we must decide whether those changes have their roots
in a social inequity. We argue that these two factors are necessary for a difference
in a health-related factor to contribute to a racial disparity. Health-related factors

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that would not change are not along a pathway that links race and health, and
those that do not have their roots in an injustice might contribute to a difference in
health by race but should not contribute to the more loaded term of a disparity.

Measuring Disparities: Statistical Models


The relationship between this conceptualization of disparities and its measure-
ment is manifested in how we treat these health-related factors in statistical mod-
els of disparities. Those factors that we think should be held constant or that
would not change if our subject lived a counterfactual race should be controlled
for in statistical models that seek to measure racial differences in health. If we seek
to measure a racial disparity in health, however, we should not include factors that
might change but are linked to a fundamental injustice. For example, if we include
overt discrimination when measuring a health disparity, we may find that the esti-
mated magnitude of the disparity is reduced, but this would be “adjusting away”
part of the very effect we are trying to measure.
Some key concepts in deciding which health-related factors fit these descrip-
tions are discussed below. As we show, a common theme that runs through these
concepts is the degree to which the subject of our thought experiment has control
over the health-related factor, and the influence that the subject’s neighborhood or
environment has over the factor.
n Inalterable facts. Certain inalterable facts of a person—in particular, age—
have an impact on health but no causal relationship with race. These are generally
attributes that people were endowed with, not something they chose or that was
done to them. In the thought experiment above, allowing the subject to change age
or sex would not yield a meaningful comparison at the end of the experiment. Con-
sequently, in statistical models of disparity, controlling for unavoidable factors is
reasonable.
n Neighborhood and environment. In our thought experiment, we would not
want to shield the subject from the effects of racial injustices, whether those injus-
tices occurred in his lifetime or were a legacy of past injustices. Doing so would re-
move from the experiment the very inequity we are hoping to measure. In the
United States, those injustices took the form of laws and policies that condoned dis-
crimination until the Civil Rights Acts of 1964 and 1968, and some researchers sug-
gest that current residential segregation is a legacy of these past injustices, especially
for African Americans.9 Since we cannot assume that our experimental subject lived
in a world with a different history, we have to allow the probability that his coun-
terfactual life was lived in a different neighborhood or environment. This environ-
ment includes not only physical features such as housing, education, and health fa-
cilities, but also the social context in which people make decisions. Environment
can affect health directly, and indirectly through its effect on education, employ-
ment, and other means of improving social status.10
How we assume our subject would respond in a counterfactual environment

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colors how we conceptualize and therefore measure racial disparities in health. At


one extreme, we could assume that most choices are a function of the individual,
so our hypothetical subject would make essentially the same decisions regarding
important health-related factors, including moving to an environment more con-
ducive to healthy living. If true, the person’s factual and counterfactual education
and other indicators of SES might look similar at the end of the experiment. From
this perspective, SES and neighborhood are important predictors of health, but
they are not causally linked to race. Thus, they should not contribute to a measure
of racial disparity, and statistical models of disparities should carefully control for
SES, geography, and related factors. Doing otherwise blurs the effect of race/eth-
nicity with the independent effect of these other factors.
Alternatively, we could view our experimental subject’s decisions as fundamen-
tally influenced by the environment and social context in which they were made.
He may be more likely to advance in school if the educational institutions in his
neighborhood were better and the social context less chaotic. In this view, educa-
tion and other measures of SES are along a causal pathway that links race and
health. If we also assume that residential segregation is a legacy of past or present
discrimination, then these factors also have roots in an inequity. Consequently, re-
searchers who see this as a plausible model of how race affects health should not
include measures of SES or geography in multivariate models designed to measure
the existence of a disparity.
n Informed and unconstrained choices. Choices that are informed and uncon-
strained should not contribute to a racial disparity. The subject of our thought ex-
periment may develop different preferences in his counterfactual life. He may
choose to read a book at the expense of exercising, or take up a risky sport so long as
he understands and accepts that those choices may have long-run health conse-
quences. These types of choices and preferences should be included in statistical
models of disparities.
For many choices, however, an indistinct line separates an unconstrained
choice from one strongly influenced by environment. Some health behaviors such
as diet may be less a conscious decision than a habit influenced by community
norms. Other behaviors such as exercise can be limited by the physical environ-
ment. Similarly, beliefs such as trust in the medical system differ by race/ethnicity
and may influence health-seeking behavior.11 If one believes that the subject of our
thought experiment would develop dissimilar health behaviors and beliefs in his
counterfactual life and that these have their roots in segregated neighborhoods,
then controlling for such factors would be inappropriate in a model of disparities.
n Health care systems factors. If our experimental subject is likely to live in a
different neighborhood in his counterfactual life, then characteristics of the health
system in his new neighborhood may affect his health. Although system-related fac-
tors also may involve some degree of choice, the choice of health care providers may
be limited by insurance and availability, and quality is difficult to observe. Whether

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our experimental subject could identify and have equivalent access to health care fa-
cilities of equal quality in his counterfactual life is unclear. Indeed, eliminating sys-
tem-level barriers such as these is often cited as a goal of disparities research. As a re-
sult, controlling for system-level factors in models of disparities is inappropriate.
n Prejudicial treatment. Overt discrimination is clearly one of the iniquitous
pathways that connect race and health, and measures of disparities should not be
adjusted for the effects of discrimination. Some forms of bias such as stereotypes
that doctors hold about minority patients’ health-related behavior or a clinician’s in-
ability to interpret minority patients’ symptoms might not be malicious, but from
the perspective of our experimental subject, they are factors causally related to his
race and imposed on him without his knowledge or consent and are therefore unjust.12

Measuring Disparities: An Empirical Example


Here we offer an empirical example of measuring disparities in neonatal mor-
tality using New York City Vital Statistics linked to death records for all non-
Hispanic black and white very-low-birthweight (VLBW) births (500–1,499
grams) from 1996 to 2001. Details of these data have been published elsewhere.13
Neonatal mortality is an iconic measure of racial disparities in health in the
United States, and deaths within twenty-eight days of birth are more than twice
as high in blacks than in whites.14 Birthweight is thought to be the most important
factor; the rate of VLBW is nearly three times higher among black than among
white infants, and VLBW births account for about 70 percent of neonatal deaths.14
Research suggests that social rather than genetic factors underlie the racial gap.
For example, birthweight is similar for neonates of U.S.-born white mothers and
African-born black mothers, but it is significantly lower for neonates of second-
generation African immigrants.15
We measured the VLBW neonatal mortality rate in New York City as 139 per
1,000 live VLBW births for blacks and 119 for whites (black-white odds ratio 1.19,
p < 0.001) (Exhibit 1). We next adjusted these odds ratios according to the con-
ceptual issues discussed above, to yield alternative estimates of the disparity in
neonatal mortality. That is, we attempted to identify and adjust for factors that are
unavoidable or that have no causal relationship to race and have no roots in a so-
cial injustice. As we show, this is a highly subjective exercise.
We first controlled for unavoidable factors, including the child’s sex, year of
birth, multiple births, and presence of a congenital anomaly. Even this step is sub-
jective because some congenital anomalies may be avoided by better prenatal care
(for example, folic acid use to prevent neural tube defects), and multiple births
may be a result of fertility treatments. Nevertheless, if one chooses to control for
these factors, the odds ratio for race decreases slightly (OR 1.17; p = 0.047).
Second, we controlled for factors some may consider choices or preferences (for
example, mother’s marital status, tobacco use, alcohol use, and prenatal care), and
the odds ratio suggested no racial disparity (OR 0.95; p > 0.2). Whether these fac-

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EXHIBIT 1
Identifying The Effect Of Race On Very-Low-Birthweight (VLBW) Neonatal Mortality,
New York City, 1996–2001

Odds ratio (black vs. white


Type of model VLBW neonatal mortality) 95% confidence interval
Unadjusted 1.19 (1.024, 1.379)
Adjusted for unavoidable factors (sex of 1.17 (1.002, 1.366)
infant, congenital anomaly, multiple birth,
year of birth)
Adjusted for unavoidable factors, and choice 0.95 (0.858, 1.216)
(marital status, prenatal care, tobacco use,
alcohol use)
Adjusted for unavoidable factors, choice, 1.00 (0.814, 1.227)
and system factors (insurance, delivery
type, hospital of birth)
Adjusted for unavoidable factors, choice, 0.62 (0.482, 0.793)
system factors, and pathways (birthweight,
maternal education, maternal complications,
Apgar score)
SOURCE: Authors’ estimates from merged New York City Vital Statistics and Death Records, 1996–2001.
NOTE: Apgar scores are used to assess a newborn’s health immediately after birth, using five criteria.

tors are truly informed preferences or choices influenced by community- and


health care system–level constraints is highly debatable. In fact, it was difficult in
our data set to identify any factor that reflects free choices unconstrained by social
norms of a mother’s community. Marriage is strongly influenced by social norms,
and prenatal care is affected by system-related constraints. Adjusting next for sys-
tems factors (for example, insurance, delivery type, and hospital of birth) yields
similar disparity estimates (OR 1.00; p > 0.2).
Finally, we included variables such as birthweight and maternal education. To
many researchers, these are inappropriate variables to include in a model of dis-
parities because they are important pathways by which race is linked to health
and have roots in historic inequities. Indeed, self-reported experiences of racial
discrimination are associated with having low-birthweight babies.16 If we include
this group of variables, our measure of disparities reverses; now we conclude that
white infants are subject to a racial disparity in health (OR 0.62; p < 0.001). How-
ever, reporting the disparity as the reverse—that white VLBW babies are suffering
from a racial disparity in health—distorts the undeniable fact that black neonates
are more likely to die than white neonates.

Discussion
Definitions of racial/ethnic disparities fall along a continuum from differences that
have little connotation of being unfair to those that result from overt discrimina-
tion. Where we draw the line between fair and unfair is subjective but is loosely

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related to how much control a person has over the factor that is causing the dis-
parity. Those factors that are not subject to a person’s choice at all but rather facts
that a person is endowed with are typically not considered to contribute to an in-
equity. Those that we have no control over but that are imposed on us by others
represent the extreme forms of injustice.
n Political discord over disparities. A terrific amount of subjectivity is in-
volved in deciding when a choice ends and an imposition begins, and this may un-
derlie the political discord over racial disparities.17 At one extreme, nearly everything
other than unavoidable facts may be considered a choice, from the diet a person
chooses to his or her decisions regarding education and thereby social position.
Central to this discord are the roles played by neighborhood and environment,
and their links to health through SES. Researchers who see racial disparities as a
“myth” recognize the important contributions of SES and environment but con-
sider those contributions as separate from race; they argue that many studies that
report racial disparities fail to adequately control for these factors.18 They suggest
a thought experiment in which disparities in health care are measured by differ-
ences in treatment experienced by two people who differ only in race and ap-
proach the same provider for care. We suggest an alternative thought experiment.
Rather than imagining two nearly identical people, we consider having one person
relive his life to date as a counterfactual race. While the previous experiment
would force the comparison person to have similar characteristics to his white
counterpart, our experiment acknowledges that residential neighborhoods are
highly segregated by race, and a person may make different choices if living a
counterfactual race in a different social context. Whether this patient in the end
would go to the same provider or have the same SES or neighborhood of residence
is doubtful. In this conceptualization of disparities, these factors are not inde-
pendent of racial disparities; they are fundamental to it.
n Policy implications. Having a consistent and agreed-upon conceptual defini-
tion of disparities facilitates the reporting of disparities and is essential to measuring
our progress toward eliminating them. The potential magnitude of the problem of
having inconsistent definitions of disparities should be evident from our empirical ex-
ample. Depending on how one conceptualizes disparities in neonatal mortality, we
could alternatively conclude that significant disparities in African American neona-
tal mortality exist compared to U.S. whites, or that no disparity exists, or that the
disparity is the reverse: that white neonates are at greater risk than black neonates.
Such conflicting reports could discourage research into narrowing the undeniable
racial gap in neonatal mortality.
Finally, it is possible that many disparities never get reported in the literature
because researchers assume that no racial disparity exists unless it remains signif-
icant in statistical models that control for insurance, SES, and related factors.
However, if we think that these factors are in the causal pathway between race/
ethnicity and health, we might miss important opportunities to address a dispar-

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ity. A consistent definition of disparities would prevent the omission of important


disparities from the literature simply because researchers had at their disposal ad-
ditional variables that might explain the disparity away.

The authors acknowledge funding from the Commonwealth Fund, the Agency for Healthcare Research and Quality,
and the National Institutes of Health’s National Center for Minority Health and Health Disparities. The findings
and conclusions in this paper are those of the authors and do not necessarily represent the views of the National
Center for Health Statistics, Centers for Disease Control and Prevention.

NOTES
1. A.M. Kilbourne et al., “Advancing Health Disparities Research within the Health Care System: A Concep-
tual Framework,” American Journal of Public Health 96, no. 12 (2006): 2113–2121.
2. H.J. Geiger, “Health Disparities: What Do We Know? What Do We Need to Know? What Should We
Do?” in Gender, Race, Class, and Health, ed. A.J. Schultz and L. Mullings (San Francisco: Jossey-Bass, 2006),
261–288.
3. R. David and J. Collins Jr., “Disparities in Infant Mortality: What’s Genetics Got to Do with It?” American
Journal of Public Health 97, no. 7 (2007): 1191–1197.
4. C.P. Jones, “ ‘Race’, Racism, and the Practice of Epidemiology,” American Journal of Epidemiology 154, no. 4
(2001): 299–304; D.R. Williams and P.B. Jackson, “Social Sources of Racial Disparities in Health,” Health Af-
fairs 24, no. 2 (2005): 325–334; and M.E. Ford and P.A. Kelly, “Conceptualizing and Categorizing Race and
Ethnicity in Health Services Research,” Health Services Research 40, no. 5, Part 2 (2005): 1658–1675.
5. Ford and Kelly, “Conceptualizing and Categorizing.”
6. Agency for Healthcare Research and Quality, 2006 National Healthcare Disparities Report (Rockville, Md.:
AHRQ, 2006).
7. B.D. Smedley, A.Y. Stith, and A.R. Nelson, eds., Unequal Treatment: Confronting Racial and Ethnic Disparities in
Health Care (Washington: National Academies Press, 2003), 3–4.
8. M. Whitehead, “The Concepts and Principles of Equity and Health,” Health Promotion International 6, no. 3
(1991): 217–228.
9. D.R. Williams and C. Collins, “Racial Residential Segregation: A Fundamental Cause of Racial Disparities
in Health,” Public Health Reports 116, no. 5 (2001): 404–416.
10. Ibid.
11. T.A. LaVeist, K.J. Nickerson, and J.V. Bowie, “Attitudes about Racism, Medical Mistrust, and Satisfaction
with Care among African American and White Cardiac Patients,” Medical Care Research and Review 57, no. 1
Supp. (2000): 146–161.
12. A.I. Balsa and T.G. McGuire, “Prejudice, Clinical Uncertainty, and Stereotyping as Sources of Health Dis-
parities,” Journal of Health Economics 22, no. 1 (2003): 89–116.
13. E.A. Howell et al., “Black-White Differences in Very Low Birthweight Neonatal Mortality among New
York City Hospitals,” Pediatrics (forthcoming).
14. T.J. Mathews, F. Menacker, and M.F. MacDorman, “Infant Mortality Statistics from the 2002 Period:
Linked Birth/Infant Death Data Set,” National Vital Statistics Report 53, no. 10 (2004): 1–29.
15. David and Collins, “Disparities in Infant Mortality.”
16. S. Mustillo et al., “Self-Reported Experiences of Racial Discrimination and Black-White Differences in
Preterm and Low-Birthweight Deliveries: The CARDIA Study,” American Journal of Public Health 94, no. 12
(2004): 2125–2131.
17. N. Krieger, “Stormy Weather: Race, Gene Expression, and the Science of Health Disparities,” American Jour-
nal of Public Health 95, no. 12 (2005): 2155–2160.
18. J. Klick and S. Satel, The Health Disparities Myth: Diagnosing the Treatment Gap (Washington: AEI Press, 2006).

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