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OCR for page 99
4
MEASURING DISPARITIES
IN ACCESS TO CARE
Nicole Lurie
Since the landmark Report of the Secretary's Task Force on
Black and Minority Health, minority Americans have been
consistently shown to have poorer health status and worse health
outcomes than White Americans (DHHS, 1985~. These differences
have remained so persistent that Healthy People 2010 specified the
elimination of disparities in health as one of its two overarching goals
(DHHS, 2002~. Included among the health disparities of most concern
are those between different racial and ethnic groups and those
associated with geography. There is now an emerging consensus that
disparities, at least between different racial and ethnic groups, arise
from several factors. These include differences in access to care and
health insurance and in the amount and quality of care offered and
received. They also appear to arise from factors not directly related to
the health care system such as socioeconomic status, literacy,
language, community factors affecting health, and differences in
access to opportunity (Williams, 19991.
The national goal of eliminating health disparities has led to a
reexamination of the health care system and a call for intensive
measures to move the nation well along toward meeting the goal
(National Archives and Records Administration (NARA), ~ 9971.
Learning from the quality movement, there has been heightened
awareness that measurement is key to achieving success. Hence, in its
reauthorization in 1999, the Agency for Healthcare Research and
Quality (AHRQ) was directed to prepare a National Healthcare
Disparities Report (NHDR), and it has formed an Office of Priority
Populations (AHRQ, 1999~. These events coincide with a closely
related effort: the development and publication of the National
Healthcare Quality Report (TOM, 200 ~ c). An earlier report from the
Institute of Medicine (TOM), Crossing the Quality Chasm, draws
99
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1 00 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT
attention to the intimate relationship between quality and disparities by
its position that equity is one of the key aspects of quality (IOM,
200 Ib).
In preparation for the NHDR, AHRQ has commissioned the
TOM to create a committee to provide guidance on how to address
various topics, including access to care. This paper is intended to
provide background and fresh thinking for the Committee for
Guidance in Designing a National Healthcare Disparities Report on the
leading issues surrounding the measurement of disparities in access to
care.
4-1. SETTING THE CONTEXT
In a seminal article that provides a conceptual framework for
access to care, Aday and Andersen identify a combination of policy
variables such as the presence of health insurance, personal variables
(predisposing, enabling, and need), and process of care elements (for
example, use) that lead to an outcome (Aday and Andersen, 1974~.
Since the article's publication over a quarter century ago, much has
sadly remained the same such as the lack of health insurance and
primary care. But much has also changed, and the challenge of
measuring disparities in access to care in the early 21St century must
account for these new realities.
Several are highlighted here:
.
National demographics are shifting dramatically, and the U.S. is
much more multi-ethnic than at any time in its history. Some
states, such as California, are already "majority minority states,"
and the proportion of the population that is Hispanic is expected to
grow dramatically in the next decade (U.S. Bureau of the Census,
1996~. Although African Americans as a group continue to have
some of the worst health outcomes, discussion of health disparities
for racial and ethnic minorities must move well beyond
comparisons of Afiican Americans and Whites.
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DISPARITIES IN ACCESS TO CARE
101
· Concurrently, there has been a shift of the population from rural to
urban and suburban areas (U.S. Bureau of the Census, 2002a).
Populations in rural areas have declined and aged as younger
people have moved to more urban environments. The recent influx
of immigrant populations, who often work on farms and in meat
processing plants, has changed the ethnic composition of rural
areas as well.
.
.
The aging of the population and a longer life expectancy mean that
chronic disease is now much more prevalent. Concomitantly, our
understanding of how best to care for people with chronic disease
is improving. Attention to end-of-life care has provided new
opportunities for people to receive care at home, and the dying
process has become more patient centered. At the other end of the
age continuum, survival among severely impaired infants has
increased, and these children often require continuous
personalized medical care services.
There have been major and continued shifts in the financing and
organization of care. While most insured Americans are enrolled
in some form of managed care, the heterogeneity among health
plans means that it is harder to generalize about them.
Nonetheless, some common elements have facilitated our ability
to examine and address disparities. Explicit attention to
responsibilities for enrollees (or identification of a denominator
population) creates important opportunities to measure both access
and quality within health plans. With this has come increased
accountability, a key element of which is measuring and reporting.
Managed care has also reintroduced the concept of population
health. Once considered analogous to public health, it is now well
recognized that caring for populations is effectively done both
inside the personal health care system and outside of it. Managed
care has also brought with it pressure to reduce health care
expenditures and concerns that access and quality could be
compromised.
Uninsurance--and underinsurance--remain major problems for
over 60 million Americans, and there is no foreseen decline on the
horizon (Commonwealth Fund, 2000~. The amount that
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1 02 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT
individuals must pay for care is increasing, and half of all seniors
report needing to cut back on essentials such as food and heat in
order to pay for medications (Families USA, 2001~. The array of
payment arrangements, deductibles, co-payments, and benefits has
grown dramatically. Nonetheless, the uninsured, minorities, low-
income populations, and rural residents disproportionately receive
care in a separate, unmanaged system composed of community
health centers, nonprofit clinics, various charity care
arrangements, and emergency departments (IOM, 2000~.
· Our understanding of what causes disease is becoming clearer.
Specifically, it is now estimated that up to 50 percent of health
status can be accounted for by health behaviors and only 15 to 20
percent by the health care delivery system (McGinnis et al., 2002~.
In other words, health care system factors contribute
proportionately less to health status when compared to other
factors, although the benefits are greatest for those in poor health
and without access to care. Importantly, advances in genetics have
confirmed that race is not a biologic construct, but a social one.
There is more genetic variation within racial groups than between
them (President's Commission, 1983~.
· Our understanding of health has broadened. Specifically, mental
health and oral health have been more clearly defined as important
components of health, and concepts like well-being or spirituality
are increasingly thought to be integral to health.
While the environment in which health services are provided
has changed, the view of access to care has largely remained the same.
4-2. EVOLVING CONCEPTUAL FRAMEWORKS OF
ACCESS TO CARE
Our understanding of access to care has evolved over the last
25 years. The conceptual framework developed by Aday and Andersen
identified the relationships among personal characteristics, policy
variables, utilization, and outcomes. As the framework evolved,
"potential access" became defined by characteristics of the delivery
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DISPARITIES IN ACCESS TO CARE
103
system and of individuals in the area. These were further divided into
the now familiar predisposing, enabling, and need variables, measured
at both the individual and community levels. "Realized access" was
represented by utilization. It was also represented by experiences with
care and equity of access that required that the distribution of services
be based on need (Andersen and Aday, 1978; Andersen et al., 1983~.
The 1983 President's Commission for the Study of Ethical
Problems in Medicine and Biomedicine and Behavioral Science
Research further emphasized the issue of equity in access in declaring
that "equitable access to health care requires that all citizens be able to
secure an adequate level of care without excessive burdens"~
(President's Commission, 1983, p. 4~. While it did identify a standard
of "equity," it did not define "adequate level of care" or how it might
contribute to outcomes.
The IOM revisited the issue of access to care in 1993, defining
access as "the timely use of personal health services to achieve the
best possible health outcomes"2 (IOM, 1993~. Of note, in choosing
indicators that represented access-related outcome measures, it more
explicitly linked access to quality and implied that everyone should
have access to care to make these "best possible" outcomes
achievable. The committee recommended a series of indicators that
affect outcome measures through the processes of entering and staying
in the health care system, the utilization of services, and quality of
care. The report depicts a more linear relationship between access and
outcomes starting with structural, financial, and personal barriers and
moving through the use of services and "mediators" (which are largely
measures of quality) to outcomes. It acknowledged the complexity of
identifying access issues, but did not address the extent to which a
poor performance on outcome measures is a direct function of poor
quality of care or of barriers to access before or after an individual has
entered the delivery system.
The advent of managed care brought with it a set of additional
factors that relate to access. This expanded framework is embodied in
the work of Docteur et al., who identify a complex series of factors
~ Emphasis added.
2 Emphasis added.
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1 04 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT
related to access and quality in managed care (Docteur et al., 1996~.
The authors include a number of contextual community variables such
as available plan choices, active marketing and market characteristics,
and stability of plan choices. They also recognize that access today
may require navigating managed care plans, for example, to obtain
referrals for care or to appeal denials. It is not clear how this challenge
differs substantially from navigating the health care system as a whole.
Finally, Envisioning the National Health Care Quality Report,
issued by the TOM's Committee on the National Quality Report on
Health Care Delivery, articulated a framework for consideration of
quality, which is not unrelated to the frameworks described above
(IOM, 200Ic). It takes the form of a matrix in which the rows describe
consumer perspectives on health care needs (staying healthy, getting
better, living with illness or disability, and coping with the end of life)
and the columns describe components of health care quality (safety,
effectiveness, patient centeredness, and timeliness). The relationships
between access to care and this framework are important and are
described in detail below.
Neither the frameworks for describing access nor that for the
National Healthcare Quality Report yet incorporate our knowledge of
what creates health or evolution in the health care system. The Docteur
et al. framework is something of an exception: it identifies community
contextual variables (such as market competition) and available plan
choices as access-related issues.3 However, as our understanding of
factors that create health develops, it is clear that the nature of
communities themselves and access to a well-functioning public health
system are critical to achieving access to personal services.
Increasingly, place appears to have an effect that is independent of
socioeconomic status (Davey-Smith et al., 1998~. Consider, for
example, factors that influence access to HIV care. A community's
socioeconomic status and its physical and social environment affect
the probability that one will become infected with HIV. Twenty-five
percent of infected individuals in the U.S. do not even know they are
infected and are thus completely unaware of the need for care (CDC,
3Andersen and Aday (Andersen and Aday, 1978) identify demographic
characteristics of individuals in communities, such as the percent over age 65
or in poverty, as having potential impacts on access.
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DISPARITIES rN ACCESS TO CARE
105
2002~. Late presentation of disease is a major determinant of bad
outcomes in this disease, which disproportionately affects minority
populations. While some of these individuals may have had missed
opportunities for HIV detection in the personal health care system (a
quality issue), the nature of the community and the failure of public
health efforts to maximize knowledge of HIV serostatus are major
barriers to access. Late stage presentation of other diseases, including
certain cancers, diabetes, and heart disease, also provides examples of
how access is tied to the effectiveness of the public health system.
An example of the importance of a community environmental
factor is oral health. It is well documented that low income and
minority children have poorer oral health and less access to preventive
or restorative dental services. Fluoridation is the single most effective
intervention in preventing caries, but approximately one-third of the
U.S. population does not have access to fluoridated water, particularly
in rural areas (National Institute of Dental and Craniofacial Research,
2000~.
Risk behaviors are irrefutable contributors to health outcomes.
and many of these behaviors are modifiable. Changing health behavior
is a joint function of the individual, the public health system (largely
through increasing awareness and education), and the delivery system.
Yet, the current conceptualization of access to care with regard to
behavior change places the responsibility either solely with the patient
or inside the health care system, often within the patient-provider
encounter. A recent review of a campaign to promote smoking
cessation during pregnancy found that the campaign did not focus on
minority populations, which have the highest rates of smoking and
SIDS (Lewis, 2001~. Women who are unaware of the risks of smoking
during pregnancy are less likely to seek or use smoking cessation
services.
Finally, it is recognized that for most chronic disease, the
major caregiver is the patient and/or family. Most care (for example,
medication adherence, adherence to risk reduction behaviors, and self
monitoring) actually occurs in the home, where the level that patients
receive is largely influenced by their communities.
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1 06 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT
Hence, it is clear that the community, the public health system,
the personal delivery system, and the individual all share responsibility
in working to achieve optimal health outcomes. Figure 4-1 combines
the frameworks discussed above to depict this relationship.
FIGURE 4-1 Relationship between Population and Personal Delivery
Systems
Population Delivery System
Community
Characteristics
Service Availability
Community
Demographics
Normative Health
Behaviors
Physical and Social
Environment
Opportunity Structure
(employment,
education)
Community Cultural
Beliefs
Market Characteristics
(plan choice,
structures)
Sickness-creatin~
Environments
Genetics_Nied
*Includes entering and
staying in system (use
of services)
Access to Care
Structural System:
Availability and
Composition of
Workforce
Transportation
Organization of
Care System
(health plan)
Personal:
Sociodemographic
Characteristics
Race
Culture
Language
Attitudes
Health Status
Experience/Ability
to Navigate System
Need
F. · ~
1nancmg Issues
Insurance Status
Provider
Reimbursement
Paths
through
Care*
Personal Delivery System
Quality
~ e hi ~>
Staying
Healthy
Getting
Better
. .
Llvmg
with
Illness or
Disability
Coping
oftLhifend _
v,
cat
.s
_
.s
_ ~
_ _
Outcomes
Death
Health Status
Satisfaction
Cost
Effects on
Individuals,
Families, and
Communities
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DISPARITIES IN ACCESS TO CARE
4-3. ACCESS TO CARE AND THE QUALITY
FRAMEWORK
107
The framework presented in Envisioning the National Health
Care Quality Report highlights the fact that access to care can be a
significant issue, even after someone has entered the health care
delivery system (IOM, 2001c). Clearly, access throughout the lifespan
to the full array of services identified in the rows of the framework is
an important policy goal. Key aspects of access are related to each of
the domains of safety, timeliness, effectiveness, and patient
centeredness. Table 4-1 and Figure 4-2 identify examples of access
indicators that can easily be placed in different cells of the quality
framework.
The following is a discussion of the relationship of access to
the framework's four components of health care quality (timeliness,
safety, effectiveness, and patient centeredness) and to the four
consumer perspectives on health care needs (staying healthy, getting
better, living with illness or disability, and coping with the end of life).
Timeliness is unquestionably a component relevant to both for
entering and staying in the system.
With regard to safety, several studies have suggested that poor
and minority patients are more likely to experience medical errors and
are more likely to have cardiac procedures perfor~ned by providers
with poorer outcomes. Whether this results from patients' uninformed
choice of providers, the lack of availability of other providers to care
for these individuals, or other factors is unclear. However, access to
safe care is critical for optimal outcomes. Access to care that is not
safe may actually be worse than no care.
OCR for page 108
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OCR for page 109
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138 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT
TABLE 4-4 Living with Illness or Disability
MEASURE PROPOSED SOURCE
Proportion of HIV-~nfected Centers for Disease Control and
Individuals Who Know Their Prevention (CDC)
Status
Proportion of HIV-~nfected CDC
Individuals Who Know Their
Status and Are Receiving Care
Proportion of ESRD Patients United States Renal Data System
Referred for Transplant System (USRDS)
Evaluation or Receiving Renal
Transplant
Proportion of Medicare Patients Centers for Medicare and
Admitted for Heart Failure or Medicaid Services (CMS)
Acute Myocardial Infarction
(AMI) Who Saw a Specialist
Proportion of Diabetics Who CMS
Received an Eye or Foot Exam
from a Health Professional
Proportion of Diabetics Who Saw CMS
a Nutritionist for Counseling
Availability of Medicaid Current Population Survey (CPS),
Coverage for Older Adults below CMS
200% of Federal Poverty Level
(FPL)
Language access. The Office of Civil Rights in the
Department of Health and Human Services (DHHS) has promulgated
standards for language access, but there are not yet regularly accepted
ways to assess this. Both institutional and patient-reported measures
are critical since this is one of the more actionable domains of access.
New measures should be based on considerations of whether language
access is available and, if so, the extent of its quality.
Measures of community/public health contribution to access.
The need for these measures to assess performance of the public health
system and the role of communities has been discussed above. Topical
areas might include comparisons of estimated incidence of disease in a
community or population to actual rates of detection/reporting,
measures of awareness and health information in communities, and
measures of community beliefs and values. Many would argue that
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DISPARITIES IN ACCESS TO CARE
139
access at a community level to resources associated with underlying
causes of disease ought to be included in a report about disparities in
access. These might include levels of educational attainment,
employment, housing quality, or access to supermarkets.
Measures of access to specialty care and to disease
management services. As chronic diseases become more prevalent and
complicated to treat, access to specialty care may be necessary to
achieve the best possible outcomes. Utilization measures are fraught
with the problems described above. Self-reported measures can be
constructed from CAMPS measures on the need to see a specialist and
whether one was actually seen. However, these measures rely on the
patient's understanding of whether specialist care is needed and
therefore may not be ideal. As in the HIV and renal transplant
examples, not knowing that care is needed is a major barrier to access.
With regard to disease management, utilization of specific services
common in disease management programs (for example, podiatry or
physical therapy) can be examined with claims data. However,
comprehensive disease management cannot.
Better need-basec! measures of access to mental health and
oral health care. While these measures should be applied across the
lifespan, the current Youth Risk Behavior Survey offers an
opportunity to apply them to adolescents. Currently, measures of
depression and suicidal ideation are collected, but mental health use is
not. A measure combining rates of successful and unsuccessful suicide
attempts would also be useful.
Better need-based measures that are both general and disease
specific. The importance of such measures has been discussed above.
Priority should be given to the development of need-based measures
for conditions that are prevalent in minority populations and that
contribute significantly to the burden of morbidity and mortality.
4-8. CHOOSING AMONG POTENTIAL MEASURES
Given the need to develop new measures, measures should be
selected in three groupings. First, the traditional core measures should
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140 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT
continue to be used. Ultimately, new measures should fulfill the
following criteria:
They should represent issues that affect all populations, but
that affect minority populations in an important way. For
disease-specific measures, priority should be given to those
conditions that were the focus of the 1998 Federal Initiative to
Eliminate Racial and Ethnic Disparities in Health.
They should cover the lifespan.
They should capture disparities that are known to exist.
They should add important information beyond core measures.
There is a strong likelihood that the health of minority
populations would improve if the focus of measurement were
addressed. It is also possible that addressing some foci would
improve health for all populations without decreasing
disparities. Because the primary aim is improved health,
measures should not be discarded for this reason.
They are particularly important for specific populations, even
if they are less salient to Whites.
7. They fill gaps in the quality framework, including the
continuum of care, attributes of quality, or care over the
lifespan.
8. They reflect patient-centered or community-centered aspects
of access.
9. They incorporate an expanded definition of health. This is
particularly important for mental health since it is an important
co-morbidity for chronic diseases such as diabetes and
etiologic in much care-seeking behavior.
Second, new measures should be selected from priority
measures that do not involve substantial development. The following
identifies the measure and explains the rationale:
1. Proportion of adolescents with no visit, and their health status.
Adolescents would constitute a new age group for this
measure.
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DISPARITIES rN ACCESS TO CARE
141
2. Proportion of adolescents with up-to-date immunization status.
Adolescents would constitute a new age group for this
measure.
3. Proportion of adults with pneumococcal or influenza vaccine.
Adults would constitute a new age group for this measure. In
addition, these vaccinations are public health priorities.
4. Rates of colon cancer screening. This measure would extend
the measurement of cancer screening to men.
5. Proportion without a blood pressure check. This measure
would capture the contributions of the community as well as
of the delivery system.
Proportion of individuals with ESRD who require dialysis at
their first presentation. This measure would capture the
contributions of the community as well as of the delivery
system.
7. Proportion of HIV-infected individuals who know their
serostatus. This measure would reflect the contribution of the
public health system.
8. Proportion of children on Medicaid who are screened for
elevated lead levels. This measure would reflect the interface
between the community and the health system.
9. Rates of admission for serious mental illness after first
diagnosis. This measure would expand the concept of health to
include mental as well as physical illness.
10. Proportion needing mental health or substance abuse treatment
who did not receive it. This measure would expand the
concept of health to include mental as well as physical health.
11. Proportion of diabetics who received an eye or foot exam from
a health professional or who saw a nutritionist for counseling.
This measure addresses health care for a major chronic
disease.
12. Insurance issues such as the availability of Medicaid coverage
for low income seniors, the proportion of people with
insurance that covers primary/preventive care and medicines,
and the proportion of people whose insurance includes co-
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142 GUIDANCE FOR THE NATIONAL HEALTH CARE DISPARITIES REPORT
payments and/or deductibles. This measure captures different
dimensions of insurance coverage.
13. Racial and ethnic composition of the health care workforce.
This measure captures a new dimension of access, the
importance of which is explained above.
discussed.
14. Literacy. This measure captures a new dimension of access,
the importance of which is explained above.
15. Proportion of Medicare beneficiaries with death from a cancer
diagnosis or HIV who received hospice services or home care
in the last six months of life. This measure addresses end-of-
life care, which is relatively neglected as an area of
measurement (TOM, 200 Ic).
Lastly, work should begin on new measures in all of the areas
4-9. CONCLUSION
A combination of existing measures, measures that can be
developed from existing data, and new measures should be included in
the NHDR. When utilization measures are used as access measures,
comparisons of groups with similar health needs will facilitate
interpretation. Additional measures should be developed, particularly
those representing the contribution of community and public health
measures to access as well as those focusing on prevalent health
conditions in minority populations.
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DISPARITIES IN ACCESS TO CARE
143
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Representative terms from entire chapter:
care disparities
