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7
Using Surveillance Data for Action
The committee concluded that a coordinated surveillance system is needed to integrate and expand existing
information across the multiple levels of decision making in order to generate actionable timely knowledge for
stakeholders at the local, state or regional, and national levels. A robust surveillance system will help to monitor,
evaluate, and improve policies, programs, and services; better direct the placement of resources; and provide a
stronger basis for advocacy and education and a benchmark for clinicians. During its deliberations, the committee
discussed whether the framework the committee was charged with developing should focus on chronic diseases
in general or whether it should be oriented more specifically to cardiovascular and chronic lung diseases. The
charge to the committee mentions both. The committee concluded that the focus, as stated in the charge, should
be “primarily on cardiovascular and chronic lung disease.” An enlarged focus on chronic diseases would require
an expanded committee, a lengthier study process, and additional resources that were not available. However, the
committee resolved to work to ensure that the framework and infrastructure it recommends will, to the extent
possible, be applicable to other chronic diseases.
The committee’s rationale for a nationwide cardiovascular and chronic lung diseases surveillance system
is based on the recognition of major gaps in current monitoring approaches and on new opportunities provided
by emerging technologies, data collection mechanisms, and healthcare reform. Rather than construct an entirely
new surveillance system, however, the committee concluded that existing surveillance data collection efforts and
cohort studies can and should be strengthened and integrated to provide the necessary surveillance information.
In terms of gaps, chronic disease trends are currently monitored by different stakeholders through an incomplete
patchwork of surveys (some standardized and many non-standardized), registries, cohort studies, and mortality
vital statistics (German et al., 2001; Goff et al., 2007). Although national surveys remain a critically important
source of information on behaviors, clinical preventive service use, and prevalence of diagnosed and undiagnosed
conditions, how trends vary across localities is poorly understood. Furthermore, local institutions lack technical
guidance, useful tools, and adequate resources to effectively monitor these outcomes in their own jurisdictions
and patient populations. Detailed patient data on disease incidence, severity, treatment practices, and outcomes are
gathered in many healthcare institutions and by most insurance companies without standardization or the means
to disseminate more broadly or even compare the patterns and trends of their patient populations with benchmarks
for the larger population. Key data sources such as Medicare and Medicaid are not easily accessed at the state
and local levels, where targeted change is most likely to occur, nor are they readily linkable to other data sources.
Underlying these weaknesses is the lack of national coordination and leadership for these disparate efforts.
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108 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES
In terms of opportunity, standardized initiatives to improve quality of care, the rapid expansion of electronic
health record (EHR) systems and patient registries, and the recent passage of the Patient Protection and Affordable
Care Act have all opened new avenues for the systematic collection, analysis, and dissemination of information
on the incidence and severity of chronic disease in populations under care (Chassin et al., 2010). National leader-
ship has been at the forefront of these recent developments, an example of the valuable opportunities that exist
to extend that leadership to completing and unifying the fragmented components of chronic disease surveillance
identified in this report.
Successful implementation of a framework for national surveillance of cardiovascular and chronic lung dis -
eases requires a mechanism to coordinate, monitor, and support the multiple data collection systems that contribute
to the surveillance system. Furthermore, the system must provide ways to ensure that the elements collected can
evolve in step with new knowledge about emerging risk factors, advancing technologies, and new understanding
of the basis for disease.
Given that the mission of the Department of Health and Human Services (HHS) is to protect the health and
provide essential services to Americans,1 that HHS is already responsible for the funding and conduct of numer-
ous surveillance efforts, and that it is in a position to bring together stakeholders from both the public and private
sectors as well as from multiple geographic levels, the committee believes HHS is in the best position to lead
the development and implementation of the recommended framework and system. Because the recommended
framework is based upon existing data collection approaches, it is crucial that those organizations responsible for
the conduct of those approaches be involved in determining the ways to use and integrate existing approaches. It
should be recognized, however, that resources are rarely available to support all the desires of each of the stake -
holders. As discussed in Chapter 6, trade-offs will have to be made in terms of what data are to be collected and
the mechanisms for doing so. For example, cost constraints may result in sampling rather than a full population
assessment or the use of self-report rather than biological examinations.
It is critical that those who represent their organizations or agencies on the committee have expertise in the
prevention, diagnosis, treatment, and surveillance of CVD or COPD or have access to such expertise as they engage
in their deliberations in order to address the problems and issues confronting them as they work to integrate and
enhance surveillance for these conditions. For example, as discussed in Chapter 3, a number of difficult issues
regarding collection of data for the surveillance of COPD remain to be resolved, and it is anticipated that the
working group will play a major role in such resolution. The committee believes strongly that federal agencies
should collaborate with the many state and local public agencies and national and state-level, nongovernmental
organizations that conduct components of the proposed system.
The use of a coordinating body, as the committee recommends below, is in line with the approach taken by
Canada in its developing Canadian Chronic Disease Surveillance System2 (CCDSS), which integrates a network
of provincial and territorial surveillance systems. The CCDSS began with diabetes surveillance and, in 2009,
expanded the system to track information on the incidence and prevalence of diagnosed hypertension. The intent
is to expand the system over time to include surveillance of other chronic diseases. The Canadian system is guided
by a Task Group on Surveillance of Chronic Disease and Injury. The membership of the Task Force is composed
entirely of government agencies, however, and the committee strongly believes that developing an effective system
for the United States requires the involvement of both public- and private-sector stakeholders.
Recommendation 1
The committee recommends that the Secretary of HHS establish and provide adequate resources for a
standing national working group to oversee and coordinate cardiovascular and chronic pulmonary disease
surveillance activity. This working group should include representatives from HHS (CDC, NIH, AHRQ,
CMS, IHS, ONCHIT, FDA), other relevant federal agencies (e.g., VA and DOD), and tribal, state, and local
public health agencies, as well as nongovernmental organizations with relevant roles in surveillance.
1 See http://govinfo.library.unt.edu/npr/library/status/mission/mhhs.htm (accessed August 2, 2011).
2 See http://www.phac-aspc.gc.ca/cd-mc/cvd-mcv/ccdss-snsmc-2010/2-1-eng.php (accessed August 2, 2011).
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BUILDING A FRAMEWORK
Effectiveness of a surveillance system depends on several factors. These factors are the quality of the data;
the ongoing, systematic collection, analysis, and interpretation of the data; the ongoing use of the results to plan
and implement prevention and control strategies; and the regular feedback from the end users to those organiz -
ing surveillance systems so that a dynamic system can evolve in a continuous manner. A surveillance system for
cardiovascular and chronic lung diseases must provide data that can be used to understand the continuum of pre -
vention, disease progression, treatment, and outcomes, and can be flexible enough to respond to new challenges
and opportunities. Data are needed that can provide information on
• Incidence and prevalence of relevant conditions over time;
• Primary prevention, including both elimination of exposures in the physical and social environments that
cause these diseases and reducing behavioral, clinical, and other risk factors (e.g., physical inactivity, poor
diets, and smoking);
• Secondary prevention efforts (i.e., early detection and intervention);
• Tertiary prevention (i.e., management of symptomatic disease);
• Health outcomes, including quality of life;
• Costs, including both the direct medical costs and the indirect costs of lost productivity, earnings, and social
burden; and
• Disparities in these factors by race or ethnicity, geographic region, and socioeconomic status. Furthermore,
the system must be flexible enough to respond to new challenges and opportunities.
Recommendation 2
The committee recommends that the national working group place priorities for surveillance on data
systems that can overtly:
• Track progress on nationally recognized goals and indicators regarding cardiovascular disease and
chronic pulmonary disease incidence, prevalence, and prevention (e.g., Healthy People);
• Evaluate and inform national, state, and local efforts to control, reduce, and prevent these chronic
diseases;
• Enable effective public health actions and policies;
• Improve treatment outcomes;
• Monitor and enhance quality of life; and
• Reduce disparities in risk and burden of these diseases.
Setting the Foundation
As noted in prior sections, the sources and types of data potentially applicable to surveillance can be cata -
loged and systematically combined to provide a diverse and rich resource. These resources can be used to generate
information and knowledge about chronic diseases that are useful in tracking prevalence, guiding public health
and prevention efforts, informing efforts to manage and treat the diseases, and developing policies that address
disparities. Similarly, the users of surveillance data can be identified and assisted by prioritizing their data require -
ments, organizing data into measures and indicators that inform decisions, and developing dissemination strategies
to make the data accessible and useful for them.
The data resources and the uses and users of those data are critical to refining the requirements for a sur-
veillance framework. However, the data needed and the decisions to be made are complex, evolving, and inter-
dependent. This requires the conceptual backbone of a framework that leverages knowledge we already have and
provides durability and adaptability going forward.
Many chronic cardiovascular and lung conditions share common risk factors and follow a broadly similar
natural history within patients and populations, which enabled the committee to adapt for its purposes a conceptual
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framework for cancer surveillance developed by Wingo and colleagues (2005) and illustrated in Figure 7-1. The
trajectory of a chronic disease usually begins at younger ages with a period of apparent good health, often with
underlying risk factors present. Some risk factors may be genetic or congenital, others may be behavioral, and
others may be found in the person’s social or physical environment. The risk factors may be ignored for a time,
but eventually they are likely to lead to clinical signs or symptoms that motivate the person to consult health
professionals. It is critical in the new surveillance system to collect data on these risk factors in order to identify
precursors prior to or at the very earliest states of disease.
Alternatively, these early manifestations may be detected through screening. The person may then transition
through diagnosis to treatment and an objectively changed stage of life. Once diagnosed, progression of symptoms
may be controlled or may proceed at variable rates as individuals live with a chronic condition and its management.
Either as a consequence of the initial condition or due to other intercurrent and complicating events, patients also
experience other conditions and, eventually, the end of life. The stages of health (with risk factors), diagnosis,
treatment, living with a chronic condition, and end of life are predictable in both likely occurrence and sequence.
Incorporating the logic and practices of primary, secondary, and tertiary prevention completes the crux of the
framework. Prevention involves actions aimed at preventing or reducing the occurrence of a condition or mini -
mizing the effects of a condition. Primary prevention is concerned with deterring the occurrence of disease in a
population through strategies aimed at disease risk factors. Secondary prevention promotes the early detection of
disease so that prompt treatment can be given in order to prevent further deterioration and early death. Screening
services are major secondary prevention strategies. Tertiary prevention focuses on disease treatment and manage -
ment to reduce the impact of disease (Last, 2001; Modeste, 1996).
Decision makers at all levels must recognize that prevention is relevant at all stages of a chronic health con -
dition. Such recognition will aid in ensuring that policy, system design, and practice align to identify and deliver
appropriate interventions throughout the course of a chronic condition.
Information about chronic conditions that evolve over the life course should include data on the timing
and appropriateness of preventive and therapeutic interventions; identify patterns of incidence and prevalence;
Stage-Specific
• Behavioral Risk • Chronic • Availability of Care • Quality of Life • Availability of Care
Factors Condition • Access to care • Functional • Access to Care
• Screening Exams Incidence • Quality of Life Capacity • Quality of Life
• Environmental • Comorbidity • Prevalence • Comorbidity
exposures • Patient education • Survival • Hospice and
Measures • Social and and engagement • Comorbidity End-of-Life Care
and environmental policies • Patient education
and engagement
Indices
Cross-Cutting
• Descriptions of chronic condition burden nationally, in states, and in communities
• Measurement of race, ethnicity, SES, education, and culture
• Costs
• Individual, social, biologic, and environmental factors
• Provider and individual knowledge, attitudes, and practice
• Individual self-management and lifestyle modification
Core
Living with
• Burden Healthy New Dx Treatment EOL
Chr. Cond.
• Patterns among
sub-groups
Primary Secondary 2nd and Tertiary Tertiary
• Change over time
Prevention Prevention Prevention Prevention
• Impact of
interventions
FIGURE 7-1 Framework for a national surveillance system for cardiovascular and chronic lung diseases.
SOURCE: Adapted from Wingo et al., 2005.
Figure S-1 and 7-1.eps
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hypothesize about causation; track changes over time; and observe the impact of interventions on important
health outcomes. Collecting and integrating data at each stage in the course of a chronic condition is important to
a comprehensive surveillance system.
Measures and Indexes
Linking the information arising within the core of the framework to action occurs through a generation of
measures and indexes. Within the core framework of progression of conditions and interventions over a life course,
some measures and indexes will apply to specific stages of the condition sequence, while other measurements will
apply to most if not all stages. Recognition and incorporation of both cross-cutting and stage-specific metrics is an
important feature for fully supporting the range of decision makers. A full specification of a portfolio of measure
and index definitions is beyond the scope of this report; however, examples of both cross-cutting and stage-specific
measure concepts are included in Figure 7-1.
Recommendation 3
The committee recommends that HHS adopt the framework illustrated in Figure 7-1 as a guide for
national surveillance of cardiovascular and chronic lung diseases.
The framework organizes data from traditional, evolving, and novel surveillance sources to reflect the devel -
opment and progression of chronic conditions over a life course. The design also captures the impact of preven -
tion as both a goal and an interventional intent. Information emerging from this core can be assembled into both
cross-cutting and stage-specific metrics to inform the actions of decision makers in multiple roles and at the macro,
meso, and micro levels of the health and healthcare systems. This general framework, while evolved specifically for
chronic heart and lung diseases, is anticipated to be broadly applicable to other chronic health conditions, including
the increasingly common occurrence of multiple chronic health conditions in the same individual.
Various data are needed to facilitate an effective surveillance system for cardiovascular disease and chronic
lung disease. These data include information about incidence and prevalence of the conditions of interest as well
as their risk factors, prevention efforts, treatments, and health outcomes. Chapter 4 describes the need to untangle
the effects of environment, income, education, race, ethnicity, and genetics on cardiovascular disease (CVD) and
chronic obstructive pulmonary disease (COPD) to foster the elimination of health disparities. Such efforts require
more effective and efficient linkages of conventional surveillance data to these more contextually relevant data
(e.g., socioeconomic status, birthplace, acculturation, geography, language, insurance, etc.).
Furthermore, an effective surveillance system must evolve to account for changing case definitions (e.g., those
of myocardial infarction and COPD). It must also allow recognition of new disease entities and an understanding
of how changes in public policy affect the disease being studied and how risk factors can have a major impact
on incidence and prevalence of other diseases. For example, a reduction in heart disease deaths may lead to an
increase in cancer prevalence as more individuals survive to older ages, when cancer becomes more common.
Incidence and prevalence of disease can be greatly affected by the presentation of patients into a node of the
medical system. For instance, if a patient who suffers from chronic respiratory illness fails to seek medical care
and hence does not receive a diagnosis of COPD, then it will be undercounted in survey data, which typically
rely on questions such as “Did a doctor, nurse, or other health professional ever tell you that you have . . . ?”
Similarly, patients who experience “silent” myocardial infarctions or who do not have cardiac enzymes drawn or
electrocardiograms performed at the time of infarction will contribute to underreporting of the true incidence
or prevalence of disease. Therefore it becomes essential to understand how a patient’s awareness of a condi -
tion, symptom, or disease can affect the seeking of medical care, and the apparent incidence or prevalence of
disease as gathered by surveillance/reporting systems. Similarly, there are significant gender differences in the
constellation of symptoms of cardiovascular disease for women as opposed to men. As awareness campaigns
gain traction, women may seek more medical attention. This can lead to more diagnoses of CVD in women, and
an apparent rise in incidence.
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Cardiovascular and pulmonary diseases do not occur in isolation. Each exists on a backdrop of multiple other
diseases whose risk factors, incidence, and prevalence are themselves changing. Because COPD contributes to an
increased risk of myocardial infarction, it becomes increasingly imperative to consider the changing prevalence
of COPD in surveillance of myocardial infarction. Similarly, the landscape of many risk factors for cardiovascular
disease, diabetes, measures of glycemic control, hypertension, hypercholesterolemia, and other comorbities change
over time. It is important to understand the fabric of change in which a disease and its risk factors are surveyed.
As discussed in Chapter 5, current surveillance efforts for CVD and COPD are incomplete. There are clear
gaps in data collection of patient outcomes that are critical for surveillance. Functional capacity, quality of life, and
patient engagement, and action measures are needed. Clear definitions and measurement techniques will need to
be tested and implemented. Finally, a system is needed to overcome the many uncoordinated efforts that frequently
produce inconsistent information (Goff et al., 2007; Yeh et al., 2010).
Existing data sources have complementary potential to provide surveillance information across the life span.
Enhancing the use of current data sources requires coordination of data collection efforts, harmonization of some
elements, expansion to include patient outcomes, and community-tailored items. Coordination of data collection
efforts across federal, state, and local systems as well as healthcare delivery systems has great potential for future
surveillance efforts. Such efforts should include, to the extent possible, standard definitions of key risk factors and
outcomes, interventions, and a mechanism to link subjects and providers across the different data sources. The
committee believes that serious consideration should be given to the scientific and cost considerations as well as
the ethical and privacy issues associated with the use of a unique personal health identifier so that results can be
compared within and across different geographical areas.
The increase in value of the multiple federal data sets that collect information from subjects, patients, health -
care providers, and healthcare insurers would be increased substantially if linkages across data sources were
possible. The use of multiple informants to measure the burden of cardiovascular and chronic lung disease risk
factors, behaviors, treatments, and outcomes could provide a comprehensive active surveillance system capable
of providing information that could be used by multiple stakeholders to analyze, understand, and act effectively.
The committee has proposed a framework (Figure 7-1) for organizing surveillance efforts that is based on
the core concepts of the life course and the role of prevention. This framework incorporates both traditional data
sources such as surveys, registries, cohort studies, and vital statistics, as well as evolving or novel sources that
include health services and patient-generated data as well as and environmental data (illustrated in Figure 7-2). It
must be noted that integrating data from these multiple sources will not be an easy task. Multiple stakeholders must
reach agreement about what needs to be collected and integrated, and mechanisms for doing so must be developed
and implemented. Such efforts will require investments of both dollars and time and progress will likely occur in
a series of steps taken over a number of years.
The recommended framework also provides for a system that is relevant to multiple users at various levels,
for example:
• At the national level for developing policies, setting funding priorities, and identifying research needs;
• At the state or regional level to aid in planning and allocating resources for various programs, services,
and educational and policy initiatives;
• At the county or other local level for developing and organizing public health and healthcare services,
developing and advocating health promotion and disease prevention policies, and educating and mobilizing
community leaders and members; and
• At the family and individual level for guiding personal changes in lifestyle and environment.
Recommendation 4
The committee recommends that the group that oversees and coordinates surveillance activity be
charged with
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FIGURE 7-2 Traditional and evolving data sources for surveillance.
• Selecting surveillance indicators and, periodically, undertaking a review of the surveillance system
in order to identify and incorporate necessary modifications;
• Improving collaboration and coordination among federal, tribal, state, and local agencies and non-
governmental organizations around the collection, compilation, and dissemination of surveillance
information;
• Collecting and making available all types of surveillance data (survey, registry, EHR) at the most
granular level consistent with protection of data privacy and confidentiality and, when feasible, linked
with other data sources (i.e. clinical databases, public health data);
• Formation of public–private partnerships with the nongovernmental health sector; and
• Development of data sets for surveillance sources that can be made broadly accessible to a variety
of users to support and guide action to improve health at the national, state, and local levels.
While the working group will provide direction as outlined above, a mechanism must be established to facilitate
implementation of the enhanced and integrated system as it evolves. Several options exist for such a mechanism,
two of which are described here. One option is the National Center for Health Statistics (NCHS) whose mission
is “to provide statistical information that will guide actions and policies to improve the health of the American
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people” (NCHS, 2009). The Health and Human Services Health Indicators Warehouse is operated by NCHS, and
surveys and data systems in the NCHS purview include:
• National Ambulatory Medical Care Survey
• National Home and Hospice Care Survey
• National Hospital Ambulatory Medical Care Survey
• National Hospital Discharge Survey
• National Nursing Home Survey
• National Survey of Ambulatory Surgery
• National Survey of Residential Care Facilities
NCHS has a Board of Scientific Counselors that provides advice and makes recommendations about research
and about new approaches for monitoring and evaluation of health-related policy changes. NCHS also facilitates the
work of the Interagency Working Group on Summary Measures of Health (IAWG), which is composed of represen-
tatives from federal agencies and which is a forum for exchange of perspectives on summary measures of health.
Arguments in favor of designating NCHS as the office to coordinate the surveillance system include its portfolios
of national surveys, which provide key national information on prevalence and distribution of disease and associated
risk factors. NCHS also collects data on many chronic diseases and vital statistics, so it would be in a good position
if the system were to expand to include chronic diseases in general. Other advantages of NCHS are that it is a federal
statistical agency with independent judgment over its data because of its congressional designation, and it collects
individual identifiers that enable linkage of data from its premier national survey, the National Health Interview
Survey (NHIS), to Medicare data, national death records, and other federal data. Key NCHS surveys, including
the NHIS, use multistage sampling designs, which enable them to sample states and other geographic areas. The
NHIS is an in-person survey, which is entirely appropriate for a national benchmark survey. The National Health
and Nutrition Examination Survey (NHANES) plays an important surveillance role because it does physical exams,
collects biological specimens, and collects interview data. The State and Local Area Integrated Telephone Survey
(SLAITS), an NCHS telephone survey that uses the sampling frame of the National Immunization Survey, could
be adapted to be comprehensive and potentially could meet state and locally defined data needs. NCHS, together
with the National Committee on Vital and Health Statistics and the HHS Data Council, clearly articulated a vision
for health statistics consistent with the perspective and recommendations of this Committee (NCHS, 2002).
NCHS has many strengths but also some limitations. The main NCHS survey, the NHIS, relies on methods
that produce representative samples nationally and at the state level, but these methods do not provide locally rep -
resentative samples and data (e.g., at the substate or county level) to support local public health action to prevent
and control chronic diseases. Coordination among the NCHS surveys and with other surveys conducted by CDC or
other federal agencies needs to be strengthened to meet the goals of a nationally integrated system. Furthermore,
NCHS does not encompass registry data, which are very important to measuring incidence and evaluating treat -
ment of some chronic diseases; has limited capability in web-based query systems; and does not have established
relationships with many stakeholders important to collecting and effectively disseminating surveillance data.
The National Heart, Lung, and Blood Institute (NHLBI) is another alternative mechanism that could be used
to implement the decisions of the recommendation 1 working group. As the National Cancer Institute relates to
the Surveillance Epidemiology and End Results (SEER) cancer surveillance system, so could NHLBI function in
relation to a surveillance system for cardiovascular and chronic lung disease. The cancer-based SEER program
collects information from population-based cancer registries that cover approximately 26 percent of the population.
NCI staff are responsible for overseeing the quality of the system and work with registry staff to ensure data qual -
ity. They also implement the decisions of the Change Control Board (CCB), which is responsible for evaluating
new features and potential changes to algorithms, database structure, and hardware infrastructure. The NCI also
compiles and disseminates reports and findings regarding cancer and interacts, a function that NHLBI currently
fulfills for heart and vascular diseases, lung diseases, blood diseases, and sleep disorders.
Arguments in favor of designating NHLBI include its expertise in cardiovascular and chronic lung disease and
its history of funding data collection on these topics. Furthermore, it already works closely with many organiza -
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tions implementing registries for CVD and could do so for organizations with registries developed for COPD, an
important strength if the surveillance system is to meet the data needs of stakeholders nationally and at state and
local levels.
Drawbacks include the fact that NHLBI would need to develop capacities it does not currently have or partner
with others to collect and manage large data streams, conduct large surveys, marshal the resources necessary to
generate data for state and local surveillance, and provide easy access to such data for a wide array of stakehold -
ers. Furthermore, the institute is more focused on a particular set of diseases, so if the system were to expand to
chronic disease more broadly, NHLBI would have difficulty expanding such a system without overlapping with
other NIH institutes.
To further understand the basis and trajectories of cardiovascular and chronic lung diseases, the information
collected by the system must be available and accessible to a variety of stakeholders as discussed in Chapter 6.
While data from national surveys conducted by the federal, state, or local governments are usually readily avail -
able, private sources of data are frequently inaccessible or accessible only with great difficulty. A greater national
investment is needed to ensure that chronic disease surveillance data are accessible to potential data users with a
wide range of technical capacities. Federal, state, and local public agencies could play a stronger leadership role
in making data accessible to all sectors of society. This role would be especially important to ensure the relevance
and accessibility of such data for chronic disease surveillance and policy making at state and local levels as well
as nationally.
Recommendation 5
The committee recommends that the Secretary of HHS designate a federal office with the following
responsibilities:
• Producing and disseminating regular surveillance reports and key indicators of progress that support
and stimulate action aimed at improving health and reducing disparities at the national, state, and
local levels;
• Assuring that the surveillance data are accessible to a broad spectrum of users (e.g., public health
agencies, health systems, researchers, policy makers, and advocacy groups) at all levels while
protecting privacy and documenting the extent of that use; and
• Implementing the recommendations of the national working group recommended in Recommendation 1.
As discussed earlier in this chapter, the life-course perspective is important to understanding the trajectory of
chronic diseases. Also needed are comparable data that enable analysis across different subpopulation groups and
geographic levels and that can be linked across data sources. Existing data collection mechanisms provide valuable
information that, with enhancements, can serve to meet the surveillance needs for CVD and chronic lung disease.
Recommendation 6
The committee recommends that HHS coordinate with voluntary bodies operating disease registries to
promote collection and harmonization of data.
Recommendation 7
The committee recommends that governmental and nongovernmental organizations enhance existing
national data sources in the following manner:
• Information on all elements of the recommended framework should be collected on the U.S. population
across the life span, with special attention paid to collecting information on diverse and changing
populations, including information on disparities.
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• A minimum subset of actionable indicators as identified by the working group should be collected
using comparable measures at the national, state, and local levels.
• Data should be increasingly linked across health domains and data sources.
Effective interventions to prevent CVD and chronic lung disease require tracking information at multiple geo -
graphic levels—local, state, and national. Likewise, federal healthcare reform legislation has established a national
healthcare coverage and delivery policy, yet much of the implementation will occur at the state level. State and
local policy makers, public health leaders, and health professionals need feedback afforded by surveillance systems
to inform them of the magnitude of disease and disparities within their geographic areas compared to other areas,
as well as the outcomes of their efforts.
Surveillance needs differ among communities. Community-tailored survey items will be necessary to under-
stand the extent to which conditions vary by characteristics such as socioeconomic status, race/ethnicity, or geo -
graphic setting (e.g., urban versus rural). As discussed in Chapter 4, these factors are frequently associated with
health disparities. To foster efforts to reduce these disparities, a surveillance system must be able to provide data
for analysis of disparities not only at the national level but also at the regional, state, and local levels. Furthermore,
the system will be most beneficial if comparisons can be made between and among various communities that
require collection of comparable data.
Recommendation 8
The committee recommends that HHS develop a cardiovascular and chronic pulmonary disease survey
question bank and technical support for use by tribal, state, and local agencies; nongovernmental organiza -
tions; and individual researchers for the purpose of enhancing the quality and comparability of population
health surveys in order to identify trends in risk factors, diseases, treatments, and outcomes.
As discussed in Chapter 6, there is great potential for the use of electronic health records as sources of sur -
veillance information. Currently, those records focus primarily on recording clinical information (e.g., diagnoses,
laboratory work, and treatments). Chapters 2 and 3 described the importance of behavioral, social, and physi -
cal environmental risk factors in the development of cardiovascular and chronic lung disease. The Office of the
National Coordinator for Health Information Technology (ONCHIT) has the responsibility to identify the minimum
data to be collected for EHRs and is in a position to take action that would significantly enhance the surveillance
information contained in EHRs.
Recommendation 9
The committee recommends that the Office of the National Coordinator for Health Information Tech-
nology expand the minimum data for electronic health records to include behavioral, social, and environ -
mental risk factors for cardiovascular and chronic lung diseases in validated, interoperable ways in order
to enhance the quality of surveillance data for these conditions.
Because EHRs are currently in use in only a minority of hospitals and practices, several interim steps are needed
before their potential can be realized. Expansion of EHRs to the majority of clinical care settings will require signifi -
cant investment in purchasing necessary equipment and software as well as staff training. Additional resources will
need to be devoted to major issues such as interoperability of EHR systems and harmonization of data standards.
Many existing sources of surveillance information provide high-quality data that are critical to understanding
the trajectory of cardiovascular and chronic lung diseases. However, those data lack standardization and cannot be
linked across sources, and many of them are not readily accessible. Furthermore, there is a need for collection of
data that facilitates analysis by various demographic variables, such as race/ethnicity, socioeconomic status, and
geography. The committee believes the recommendations provided in this report lay the foundation or framework
for the development of the complex, interdependent system needed.
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