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Volume 1:
No. 2, April 2004
COMMENTARY
State-based Diabetes
Surveillance Among Minority Populations
Jay Desai, MPH
Suggested citation for this article: Desai J.
State-based diabetes surveillance among minority populations.
Prev Chronic Dis [serial online] 2004 Apr [date cited].
Available from: URL: http://www.cdc.gov/pcd/issues/2004/
apr/03_0030.htm.
The elimination of health disparities in the United States is a national
priority and overriding goal for Healthy People 2010 (HP 2010). Surveillance of
health indicators among minority populations is essential to eliminating
disparities. Surveillance is critical for program planning, policy making,
evaluating population-based strategies, and tracking progress toward
national and state objectives.
The U.S. public health field has made steady progress in diabetes
surveillance over the past decade, but there is much room for improvement
(1). In this issue, Burrows et al report the findings and recommendations of
an expert panel on the feasibility of using current surveys for diabetes
surveillance among minority populations (2). The expert panel, convened by
the Division of Diabetes Translation at the Centers for Disease Control and
Prevention, found existing surveys insufficient for diabetes survey
surveillance among minority populations, and, given the realities of finite
resources, the panel recommended modifying and expanding existing survey
systems to improve this capacity.
Many initiatives to eliminate racial and ethnic disparities are underway at
the state and local levels; therefore, surveillance systems
are needed at these levels. In an analysis of the capacity of states to measure
HP 2010 objectives, Land found that only 56% of the objectives could be measured
at the state level and 33% at the county level (3). At the state level,
diabetes fared better than most other focus areas (e.g., heart disease,
cancer, environmental health, immunization and infectious disease, maternal
and child health) because 12 of the 14 objectives could be measured. However, if we extend this analysis to race
and ethnicity objectives, only 3 diabetes mortality indicators are
measurable. These HP 2010 measurable objectives are the framework for
setting the U.S. health agenda and for guiding state and local health
activities. Yet they cannot be used among minority populations at the state
and local levels because they are not currently measurable.
The Behavioral Risk Factor Surveillance System (BRFSS) is a cornerstone of
diabetes surveillance at the state level. It is used for tracking the
prevalence of diabetes, risk factors for diabetes and its complications
(e.g., physical inactivity, obesity), and preventive care practices among
people with diabetes (e.g., adult vaccination, eye exams). Of the surveys
listed by Burrows et al, the BRFSS is the only one conducted among all 50
states in a systematic, ongoing way. Unfortunately, the BRFSS remains
inadequate for diabetes surveillance among minority populations. In 2000,
the median state BRFSS sample size for all persons diagnosed with diabetes was
211. Thus, few states had sufficient respondents with diabetes to estimate
risk factors and preventive care practices among minority populations with
diabetes.
Another issue for states is the ability to establish long-term resources to
conduct and maintain health surveillance among minority populations. For
example, in 2001, the Minnesota Department of Health (MDH) began a
multimillion-dollar initiative to eliminate health disparities: diabetes
was one of 8 health priority areas. Part of the statute establishing the
initiative specifies that "[t]he commissioner [of health] shall enhance
current data tools to ensure a statewide assessment of risk behaviors
associated with the eight health disparity priority areas. The statewide
assessment must be used to establish a baseline to measure the effect of
activities funded." This is an important statement because it
recognizes the need to improve statewide surveillance among minority
populations. But, despite the statutory requirement to improve surveillance,
the legislature mandated that all funds be distributed in grants to
communities and to the MDH for oversight and programmatic support. No funds
were made available for statewide improvement in surveillance systems among
minority populations.
Emerging minority populations within states, such as the Somali and the
Hmong in Minnesota, pose additional diabetes surveillance challenges. Health
surveillance data on these populations are almost nonexistent. Furthermore,
new methods designed to overcome language and cultural barriers may be
required for identifying and tracking diabetes indicators among these
populations; traditional methods such as telephone surveys may not be
feasible.
In Minnesota, one approach used to identify appropriate health indicators
for surveillance is participatory research partnerships (PRPs). This approach
involves partnerships among African American, African immigrant, American
Indian, Hispanic, and Asian immigrant communities to understand health
concepts and other cultural issues and to determine appropriate health
indicators. The challenge of systematically and regularly monitoring these health indicators remains.
At the state and local levels, expanding the BRFSS or developing new surveys
for diabetes surveillance among minority communities will be costly. To
expand diabetes surveillance, states must look to alternatives such as
health care administrative data (e.g., hospital discharge, Medicare,
Medicaid, managed care). Even though such data only pertain to people
under medical care, analyzing data already being collected may be the most
efficient way of expanding diabetes surveillance among minority populations.
Unfortunately, many hospitals and most managed care organizations do not
systematically collect or report race and ethnicity information. The
Institute of Medicine, in a report on disparities in health care, has
recommended that race and ethnicity, education level, and primary language
data all be collected and reported in a standardized way and included in
hospital and managed care performance measurement (4). A pilot project among
8 managed care organizations (MCOs) has begun exploring methods for
assessing racial and ethnic disparities within their populations. Bierman et
al have outlined the importance of using race and ethnicity data by MCOs as
well as highlighted potential barriers to collecting racial and ethnic data — barriers such as perceived legal, business, and confidentiality concerns
(5,6).
In Minnesota, statutory language was developed to require insurers to provide claims data —
and eventually race and ethnicity data — to the MDH for the purpose of
public health research and surveillance. Public concerns about data
confidentiality curtailed this initiative, even though sophisticated methods for
ensuring confidentiality were in place. The MDH continues to garner support
from health care providers, MCOs, and other stakeholders and to articulate
the purpose, need, and confidentiality safeguards for a statewide medical
claims database. Such large-scale efforts, either voluntary or statutory, are
underway in many states and can considerably enhance state and local
diabetes surveillance among minority populations.
Current state diabetes surveillance systems among minority populations must
be improved if we are to make progress toward eliminating racial and ethnic
disparities or to know if we are even making progress. Expanding current
surveillance surveys, although less expensive than starting new surveys,
will require substantial financial resources and long-term commitment. For
some populations (recent immigrants, for example) new surveillance methods may be
required. The use of alternative surveillance data sources, such as health
care administrative data, will have financial ramifications and raise
confidentiality concerns. Ultimately, a concerted and committed effort by public health
and health care organizations to begin systematically collecting and
reporting data on race and ethnicity is needed and will benefit all.
Acknowledgments
I would like to thank David Stroud for his insights and comments in
developing this article.
Author Information
Corresponding author: Jay Desai, Minnesota Diabetes Program, Minnesota
Department of Health, PO Box 64882, Saint Paul, MN 55101. Telephone:
651-281-9844. E-mail: jay.desai@health.state.mn.us.
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References
-
Desai J, Geiss L, Mukhtar Q, Harwell T, Benjamin S, Bell R, et al.
Public health surveillance
of diabetes in the United States. J Public Health Manag Prac 2003 Nov;Suppl:S44-51.
- 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. Available from: URL: http://www.cdc.gov/pcd/issues/2004/apr/03_0018.htm.
- Land G. Measuring 2010 national objectives and leading indicators at the
state and local level. J Public Health Manag Prac
2002;8 (4):9-13.
- Smedley BD, Stith AY, Nelson AR, editors. Unequal treatment: confronting racial and ethnic
disparities in healthcare. Washington (DC): National Academies Press; 2003.
764 p.
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Nerenz DR, Bonham VL, Green-Weir R, Joseph C, Gunter M.
Eliminating
racial/ethnic disparities in health care: can health plans generate reports? Health Aff 2002 May-Jun;21 (3):259-63.
-
Bierman AS, Lurie N, Collins KS, Eisenberg JM.
Addressing racial and
ethnic barriers to effective health care: the need for better data. Health
Aff 2002 May-Jun;21 (3):91-102.
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