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Volume 1:
No. 2, April 2004
EDITORIAL
Using Survey Data for
Diabetes Surveillance Among Minority Populations: A Report of the
Centers for Disease Control and Prevention’s Expert Panel Meeting
Nilka Ríos Burrows, MT, MPH, José Lojo, MPH, Michael M. Engelgau, MD,
MS,
Linda S. Geiss, MA
Suggested citation for this article: Burrows NR, Lojo
J, Engelgau MM, Geiss LS. Using survey data for diabetes surveillance among
minority populations: a report of the Centers for Disease Control and
Prevention's expert panel meeting. Prev Chronic Dis [serial
online] 2004 Apr [date cited]. Available from: URL: http://www.cdc.gov/pcd/issues/2004/
apr/03_0018.htm.
Abstract
Introduction
Data on diabetes morbidity and mortality and the quality of care among U.S.
minority populations are necessary to assess progress toward eliminating
racial/ethnic disparities and to design and implement effective
interventions. This paper summarizes the discussions and recommendations of
an expert panel to address the use of survey data for diabetes surveillance
among minority populations.
Methods
The Centers for Disease Control and Prevention's Division of Diabetes
Translation convened an expert panel of persons with survey experience and
awareness of the problems in conducting health-related surveys among
minority populations. Panel members were asked to 1) determine ways to
enhance the ability of existing survey systems to address diabetes
surveillance among minority populations; 2) identify survey systems that
could be used to address surveillance needs; and 3) determine whether new
minority-specific survey systems need to be developed.
Results
Panel members concluded that, although no existing survey system is
completely adequate for diabetes surveillance among minority populations,
new systems should not be developed. They recommended 1) investigating the
use of community-based surveys; 2) exploring the ability of national surveys
to increase sample sizes and produce state-level estimates; and 3)
encouraging government agencies and public health programs to coordinate and
integrate diabetes-related survey data and share analytic methodology.
Conclusion
No existing survey is suitable for conducting minority-specific diabetes
surveillance. Modifying and expanding existing surveys to establish a
diabetes surveillance system of sentinel minority populations would be more
feasible than developing a new one. Interagency coordination and
collaboration will be critical in this effort.
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Introduction
An estimated 17 million people in this country have diabetes, and of
these, nearly 6 million are not aware of their condition (1). According to
the American Diabetes Association, diabetes costs nearly $100 billion
in direct medical care costs and indirect costs such as lost productivity
(2). Appropriate preventive care practices could prevent or delay a large
proportion of the costly and disabling consequences of diabetes (3).
Compared with the general population, certain racial/ethnic communities, as
well as older Americans and economically disadvantaged Americans, are
disproportionately affected by diabetes and are at increased risk for some
diabetes-related complications (4). Potential reasons for these groups
being disproportionately affected include a greater prevalence of risk
factors and comorbid conditions, inadequate access to medical care, and
suboptimal diabetes-related preventive care.
The Division of Diabetes Translation (DDT) at the Centers for Disease
Control and Prevention (CDC) uses many data sources to conduct public health
surveillance of diabetes and to estimate the burden of diabetes at the
national and state levels. These data sources include surveys such as the
Behavioral Risk Factor Surveillance System (BRFSS) and the National Health
Interview Survey (NHIS), administrative databases such as the U.S. Renal
Data System, databases of the Health Care Financing Administration, and
vital statistics data. However, several problems are associated with the use
of these data in diabetes surveillance among minority populations: 1) surveys cannot reach all minority populations of
interest; 2) administrative data sometimes do not include information on
race and ethnicity; 3) small sample sizes of minority populations do not
allow for accurate estimates of the diabetes burden at the state or
community level; and 4) minority populations often are erroneously treated
as homogeneous (for example, Mexican Americans, Cuban Americans, and other distinct
ethnic groups are usually considered to be part of a homogenous group called
"Hispanics").
In 1998, the Department of Health and Human Services' Initiative to Eliminate Racial and Ethnic Disparities in Health
established as a national
priority the elimination of racial and ethnic disparities in health outcomes
among U.S. residents. Data for monitoring progress toward this objective,
however, are lacking for many minority populations. Obtaining high-quality
surveillance data on diabetes-related morbidity and mortality and quality of
diabetes care among minority populations is thus important in identifying
disparities and monitoring progress toward reducing these disparities. To
discuss the use of survey data for the surveillance of diabetes among
minority populations, DDT convened an expert panel meeting.
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Methods
DDT organized and conducted the August 5–6, 2002, expert panel meeting. The
panel consisted of 18 persons from agencies or organizations outside of DDT,
most of whom had survey experience and were aware of the challenges in
conducting surveys of health-related information among minority populations.
Panel members represented 4 federal agencies, 4 university-affiliated
institutions, 2 private nonprofit organizations, and one state health
department (Table 1). Panel members were asked to help the CDC to 1)
determine ways to enhance the ability of existing survey systems to address
diabetes surveillance among minority populations; 2) identify survey systems
that could be used, but currently were not being used, to address
surveillance needs; and 3) determine whether new minority-specific survey
systems need to be developed.
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Results
The expert panel members identified numerous national, state, and
community-based survey systems and discussed the systems' abilities to
address the health information needs of minority populations (Table
2). Most
of the identified surveys were cross-sectional in design and national in
scope, administered either face-to-face or by telephone, and sponsored or
supported by various federal agencies. The expert panel members noted
several issues and problems associated with using national survey data for
disease and risk factor surveillance. These included sample sizes for
minority populations being too small, sampling being limited to the larger
minority populations, discrete minority groups being treated as homogeneous
rather than diverse populations, and national data being inadequate for
estimating state and community problems.
Moreover, the panel questioned whether a national sample of specific
minority populations could produce meaningful results given the diversity
within these populations. State and community surveys share some of these
same problems, but they have the advantage of access to local data, which
have more immediate relevancy in planning and evaluating community-based
interventions to improve public health. Although local surveys may have the
greatest potential for targeting subgroups of minorities, data on such
subgroups may not be generalizable to the larger minority populations.
The panel members recognized that the list of surveys discussed as potential
sources of data was probably not complete and recommended several strategies
to identify additional survey systems that could be useful. These strategies
included 1) a summary review of existing longitudinal studies and other
relevant data; 2) a search of surveys sponsored by federal or public
agencies other than the Department of Health and Human Services; and 3) a
query of state health programs to establish an inventory of special surveys.
Recognizing that diabetes is an important growing public health problem (5),
the panel stressed that the inclusion of diabetes-related data in existing
survey systems is critical. The panel highlighted the need to coordinate the
diabetes surveillance efforts of survey systems by using uniform
diabetes-related questions, sharing analytical techniques (such as pooling
data), and promoting the standardization of measurement and analysis
practices.
The panel also discussed the need to examine survey content to ensure that
surveys are capable of producing the thorough data necessary to design
effective public health interventions. In addition to producing data on
minority racial and ethnic groups, surveys also should produce data on other
disadvantaged populations as measured by socioeconomic status, social
capital, community resources, education, and access to or denial of health
insurance, because these factors generally underlie many racial and ethnic
disparities.
Finally, the panel discussed the need to establish new minority-specific
survey systems and concluded that developing and maintaining new survey
systems would be too costly and time-consuming. Instead, the panel
recommended expanding upon and enhancing existing survey systems at the
state and local levels. Specifically, the panel recommended investigating the
use of community-based surveys, such as those in the Racial and Ethnic
Approaches to Community Health 2010 project, state- and
local-specific surveys of the BRFSS,
and the State and Local Area Integrated Telephone Survey. The panel also
suggested modifying existing surveys by, for example, increasing sample
size, adding supplementary content, sampling additional minority groups, and
developing the capacity of national surveys such as NHIS to collect state
and community-level data.
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Discussion
Data on diabetes-related morbidity and mortality and quality of
diabetes care among different U.S. minority populations are necessary to 1)
assess progress toward eliminating racial/ethnic disparities in the health
burden of diabetes, and 2) design and implement effective interventions for
minority groups that are disproportionately affected by diabetes.
No existing survey is suitable for conducting minority-specific diabetes
surveillance. Modifying and expanding existing surveys to establish a
diabetes surveillance system of sentinel minority populations, however,
would be more feasible than developing a new one. Interagency coordination
and collaboration will be critical in establishing such a system.
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Author Information
Corresponding author: Nilka Ríos Burrows, 4770 Buford Hwy, Mail Stop
K-10, Atlanta, GA 30341, Telephone: 770-488-1057. E-mail: nrios@cdc.gov.
Author Affiliations: Nilka Ríos Burrows, José Lojo, Michael M. Engelgau, Linda S. Geiss,
Division of Diabetes Translation, National Center for Chronic Disease
Prevention and Health Promotion, Centers for Disease Control and Prevention.
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