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Summary
Chronic diseases are common and costly, yet they are also among the most preventable health problems (CDC,
2008). Comprehensive and accurate disease surveillance systems are needed to implement successful efforts to
reduce the burden of chronic diseases on the U.S. population. A number of sources of surveillance data—including
population surveys, cohort studies, disease registries, administrative health data, and vital statistics—contribute
important and critical information about chronic disease. But no organized surveillance system provides the infor -
mation needed to analyze how chronic disease impacts various U.S. populations by race, ethnicity, and locale; to
identify public health priorities; or to track the progress of preventive efforts.
The National Heart, Lung, and Blood Institute of the National Institutes of Health and the Division for Heart
Disease and Stroke Prevention of the Centers for Disease Control and Prevention (CDC) asked the Institute of
Medicine (IOM) to form a committee that would develop a framework for building a national chronic disease
surveillance system. This system would focus primarily on cardiovascular and chronic lung disease and be able
to provide data for analysis of race, ethnic, socioeconomic, and geographic region disparities in incidence and
prevalence, functional health outcomes, measured risk factors, and clinical care delivery. Questions for the com -
mittee to consider included:
1. Given what seems to be an existing consensus within the clinical and public health communities that
national surveillance should be a high priority, is there a need for a new surveillance system and
infrastructure? How might different types of surveillance systems (e.g., standard and sentinel) be included
in a national system?
2. Might existing surveillance data collection efforts and cohort studies be strengthened or integrated to
provide necessary surveillance information?
3. How might surveillance efforts include associated conditions, such as chronic lung disease, that contribute
to cardiovascular disease and outcomes?
4. How could surveillance data be used to enhance research to address health disparities?
5. Given that fundamentally different approaches to national surveillance could be implemented, what
general comments might be made on the relative efficiencies of an entirely new infrastructure versus one
built upon currently existing systems?
6. How might local communities participate in the collection and use of data?
1
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2 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES
7. How might various federal, state, and local agencies collaborate in surveillance of cardiovascular and
pulmonary disease data collection, determination of research priorities, and development of public policy?
8. What degree of validation is needed for cardiovascular disease (CVD) and pulmonary events identified
through records systems?
9. Are there new initiatives that might be exploited for new national chronic disease surveillance efforts,
such as:
a. The Public Health Information Network (http://www.cdc.gov/phin/index.html), including BioSense, a
real-time disease detection and monitoring system designed primarily for infectious disease surveillance
(http://www.cdc.gov/phin/ library/documents/pdf/111759_biosense2.pdf);
b. The National Electronic Disease Surveillance System project to establish a network of interoperable
systems for “national integrated surveillance” (http://www.cdc.gov/phin/library/documents/pdf/111759_
NEDSS.pdf);
c. The Food and Drug Administration’s (FDA’s) Sentinel System;
d. Local community surveys; or
e. Efforts to increase use of electronic medical records (EMRs) nationally?
10. Can any existing data sources, such as Veterans Administration systems, health maintenance organization
networks, or the Department of Defense systems, be used?
11. What can be learned from chronic disease surveillance in other developed countries?
The committee interpreted its charge as entailing a fairly broad approach with a focus on developing the over-
arching framework and the infrastructure required to create such a framework. While the committee determined
it could identify kinds of data necessary for a framework (e.g., behavioral risk factors), identifying the specific
data elements and the ways in which those elements are to be measured, collected, and verified is at a much more
detailed level of specificity and requires greater resources than those available to the committee.
In considering the extent to which the framework should focus on chronic diseases in general, the commit -
tee 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 pro -
cess, and additional resources that were not available. However, the committee resolved to devise a framework
and infrastructure that could, to the extent possible, be applicable to other chronic diseases. The committee also
recognized the rich history and accomplishments of existing surveillance resources, which can be leveraged in
designing a national surveillance framework that would be timely, reliable, and comprehensive for current users
of surveillance information.
EXISTING SURVEILLANCE EFFORTS
In health, surveillance systems are constructed to routinely provide information on the scope, magnitude, and
cost of a health problem in order to regularly influence priority setting, program development, and evaluation of
services or policies. While surveillance has been historically concentrated on notifiable 1 conditions or diseases,
more recent surveillance efforts have expanded to track chronic diseases (Goodman et al., 2006). But surveillance
of these conditions is difficult because of the challenges of disease definition, ascertainment, and differences in
access to care, changes in clinical practice, multiple care providers, and lack of perceived threat of disease trans -
mission. Surveillance of chronic conditions is also complicated by the need to provide data from several distinct
domains (e.g., environment, income, education, race, ethnicity, and genetics) whose interaction leads to disparities
in health and health care. A uniform framework for a nationwide surveillance system for these chronic conditions
1
A notifiable disease is “a disease that, by statutory requirements, must be reported to the public health authority in the pertinent jurisdic -
tion when the diagnosis is made. A disease deemed of sufficient importance to the public health to require that its occurrence be reported to
health authorities” (Last, 2001). The Council of State and Territorial Health Epidemiologists works with the CDC to regularly update the list
of notifiable diseases.
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3
SUMMARY
must also address the challenges that arise from the long-term nature of the risk and conditions, the large number
of stakeholders involved in prevention and control, and the many potential objectives to be met.
A number of surveys, registries, cohort studies, administrative data, and vital statistics are used by different
stakeholders to gather different kinds of information about these diseases. (See Appendix A for details.) Routine
surveys are particularly valuable for obtaining information about prevalence and distribution of chronic diseases
as well as about associated risk factors that may contribute to the diseases and their consequences. Major strengths
of surveys include the breadth of information they offer and their ability to achieve representation through careful
sampling. Such information may be helpful in tracking distributions, changes in rates, and comparisons among
subgroups. In-person surveys, although costly, are widely considered to be most inclusive of the population because
they select people based on where they are rather than whether they answer their telephone or respond to mail
surveys, and because they often have high response rates. A limitation of many surveys is that they rely exclusively
on respondent self-reporting to questionnaire items. Surveys are perhaps most valid for measuring many health
behaviors, mental health conditions, perceived barriers to accessing health services, and reporting of symptoms.
A registry is one of the most powerful tools employed to record chronic diseases. Disease-specific registries
are useful for capturing patient-specific data for individuals with selected conditions. Registries have significant
advantages; the most important is that needed data are collected prospectively in the exact format required. Reg -
istries allow calculation of incidence rates and, if the cases are followed up regularly, a registry can also provide
information on remission, exacerbation, prevalence, and survival. Despite the advantages of using registries for
surveillance, they have some inherent limitations. Registries miss patients who visit healthcare providers not
participating in the registry as well as individuals who do not receive care. Registries can also suffer bias due to
unmeasured confounders and misclassification of patients into a registry. Furthermore, because of the time and
effort required to enter data into a registry, clinicians may be reluctant to register patients or collect and record
data on busy days, and busier clinicians may be less inclined to participate in registries altogether.
Another approach to surveillance is the cohort study. A cohort study is an epidemiological study which
observes a group of individuals over time. The cohort design can be either prospective or retrospective. Retro -
spective cohort studies are less costly, shorter in duration, and useful for examining prior exposures; however, the
resulting information is less complete and accurate than with the prospective approach. In general, the prospective
cohort design offers several advantages, including the ability to provide incidence rates, determine a temporal
sequence of events (exposure precedes disease), and examine multiple outcomes from the same exposure simulta -
neously. Additional advantages of the cohort design are the emphasis on systematic data collection and uniformly
conducted measurements; however, a major weakness is the potential for differences between study volunteers
and the general population. Other disadvantages include subject attrition, inability to produce prevalence data,
and relative expense.
Claims data and medical record data obtained from manual chart abstraction or emerging electronic health
records (EHRs) are two other sources of information that can be used for surveillance. Claims data can be used to
enumerate each person’s encounter or service. They can be collected for hospitalizations, outpatient visits, public
program coverage, or private health insurance. Claims data may include sufficiently detailed information to analyze
the incidence rate of a chronic condition, the social characteristics of people who receive services for the condi -
tion, and the types of services they receive. Claims data may also include geographic identifiers for persons or
service providers and may be used to map geographic patterns of the incidence of hospitalizations, other services
provided, and healthcare costs, which can be used in analyses of healthcare disparities. Although administrative
claims data are useful at the macro level to describe patterns of use and mortality, limitations do exist, including
coding errors, limited clinical information, and diagnostic misclassification such as underdiagnosis, overdiagnosis,
and misdiagnosis common with cardiovascular and chronic lung diseases.
Data abstracted from medical records and EHRs can provide a detailed record of the history of health services
for persons with chronic conditions and can be used to assess quality of care provided to persons with chronic
conditions. If they include characteristics of the individual patients, the data also can be used to assess dispari -
ties in care. These data can be abstracted for use in registries and for combination into other data sets such as
the Healthcare Cost and Utilization Project. However, like registry data, health services data exclude information
extraneous to the healthcare delivery system.
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4 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES
Death records are an important source of information on mortality trends and patterns. Death certificate data,
which include underlying and contributing causes of death, are compiled at the local and state levels in nearly
all states and then shared with the National Center for Health Statistics. However, death certificates have been
found to have relatively low sensitivity and specificity compared with medical chart review or autopsy findings.
Coronary heart disease, for example, is overreported as a cause of death (Agarwal et al., 2010; Coady et al., 2001;
Lloyd-Jones et al., 1998; Sington and Cottrell, 2002), and chronic obstructive pulmonary disease (COPD) is under-
reported (Camilli et al., 1991; Mitchell et al., 1971).
Currently, these surveys (some standardized and many non-standardized), registries, cohort studies, health
services data, and mortality vital statistics provide an incomplete patchwork of information used by different
stakeholders, often with inconsistent findings (Goff et al., 2007; Yeh and Go, 2010).
EMERGING SOURCES OF SURVEILLANCE DATA
Emerging experience with use of health information technologies (HITs) by both patients and providers
suggests that, in addition to current sources of surveillance information, there will be expanding and potentially
more efficient approaches to generating data for surveillance. Of particular interest is the potential, via the EHR,
to economically and completely capture care events and processes and efficiently organize them into robust
population- and condition-based registries. The healthcare reform goal of universal coverage, along with broad
promotion of HITs (especially the EHR), may markedly increase the value of the medical record for disease sur-
veillance. When an electronic medical record is suitably designed, analyses can be performed without duplicative
data generation and handling. EHR data can also be used to generate lists of potential patients for a registry and
prospectively register patients or to identify potentially eligible patients during healthcare visits. Challenges to
using EHRs for surveillance include (1) a relatively small number of hospitals and practices currently use EHRs;
(2) data collected in EHRs may not include the data necessary for effective surveillance; (3) sicker patients are
likely to be overrepresented in EHRs due to more visits and more data per visit; (4) inaccurate coding occurs; and
(5) patients with significant barriers will likely be underrepresented in EHRs. Despite these difficulties, EHRs
have an important role to play in CVD and COPD surveillance, and their growth requires their inclusion when
planning for a national surveillance system.
In addition to provider-generated EHR data, the generation and sharing of personal health data by individuals
themselves (a trend that has its root in the emergence of the Internet) is a growing health data phenomenon with
potential implications for timely, robust, and relevant surveillance. Recording of data by patients in HIT systems is
being facilitated by a range of online personal health records. These may be provided by health insurers, integrated
delivery systems, commercial providers of health information tools and support, and freestanding personal health
records. Timely access to personally relevant information has been a driving force for patients to form, join, and
share experiences and data within a range of organizations independent from historically defined public health,
healthcare delivery, and health research entities. A new tool that has the potential to modify the future of surveil -
lance and population-based research is the development of registries that integrate social networking, such as those
registries currently recruiting in Kentucky2 and Illinois.3 An advantage of registries linked to social networking
capabilities is that it creates the potential to follow people easily as they move around the country and even abroad,
but their voluntary and non-randomized participation makes generalizing the data obtained from them challenging.
Registries linked to social networking sites also produce privacy issues.
LEVELS AND USES OF SURVEILLANCE
Information and knowledge needs vary by perspective, and resources are rarely available to support all needs.
Furthermore, the types of information and level of detail required will vary among users of surveillance data. A
nationwide surveillance system will, therefore, involve consideration of a range of user groups. Table S-1 provides
2 See https://www.mc.uky.edu/kyhealthregistry/ (accessed August 2, 2011) .
3 See https://whr.northwestern.edu/ (accessed August 2, 2011).
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5
SUMMARY
TABLE S-1 Levels and Users of Decision Making
Place
and Implementation Linkage to 2010
Roles Place Type Who What Levers Reforms
PPACAa
Macro • Federal • Business • Federal Priority setting • Legislation
• National coalitions government for • Funding • Comparative
• Nationwide • Benefit organizations • Regulation institutions effectiveness
• ACOsb
associations • Medical • Research and (e.g., National
ARRAc
• National society development Institutes of
HIT/ONCd
employer • Objectives/ Health)
targets (e.g., • Communications • Meaningful use
Healthy
People 2020)
Meso • Region • Regional/state • State board • Strategies • Budgets ACOs
• State employer • Medical • Programs and • Institutions and HIT funding
society initiatives departments • Beacon sites
• Business • Communications • Meaningful use
• HIEe
planning and incentives
• County • Small business • Multispecialty
development Chronic care
• City medical group
• Performance Prevention
• Community • Hospital
reporting
medical staff
• Public health
workers
• Local
advocates
Micro • Neighborhood • Schools • Medical • Interventions • Guidelines Insurance reform
• ZIP+4 • “Mom and Pop” practice • Care and • Programs and • Access
• Home • Clinician action plans initiatives • Free prevention
• Family • Outcomes • Communications services
• Individual • Payment or • Payment reform
coverage • Pay for
performance
• ACOs; medical
home
a PPACA = Patient Protection and Affordable Care Act.
b ACO stands for Accountable Care Organization. According to the Medicare Payment Advisory Commission, “The defining characteristic of
ACOs is that a set of physicians and hospitals accept joint responsibility for the quality of care and the cost of care received by the ACO’s panel
of patients” (MedPac, 2009).
c ARRA = American Recovery and Reinvestment Act of 2009.
d HIT stands for health information technology. ONC is the Office of the National Coordinator for Health Information Technology.
e HIE stands for health information exchange.
examples of different users of surveillance information that can be found at the micro, meso, and macro levels of
surveillance.
Surveillance design will require explicit trade-offs in what is included and which user needs are addressed
because resources are constrained by time, funding, data accessibility, and acceptability of use. For example, cost
constraints may result in sampling rather than assessment of an entire population or force a trade-off between
detailed biological examinations versus self-reported information. To protect the confidentiality of individual
patient data, sample-size thresholds may be required for reporting. Strategies for improving surveillance will need
to balance a number of challenges, including the tension between cost and granularity, and the differing needs of
the various user constituencies of data.
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6 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES
CONCLUSIONS AND RECOMMENDATIONS
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 a
range of stakeholders at the local, state or regional, and national levels. The committee further concluded that exist -
ing surveillance data collection efforts and cohort studies can and should be strengthened and integrated to provide
the basis of the system. Successful implementation of a framework for nationwide surveillance of cardiovascular
and chronic lung diseases 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 by the system can evolve along 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 of
and provide essential health services to Americans,4 that HHS is already responsible for the funding and conduct
of numerous surveillance efforts, and that it is in a position to bring together stakeholders from both the public
and private sectors as well as those from multiple geographic levels, the committee concluded that 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 organiza -
tions responsible for the conduct of those activities be involved in determining ways to use and integrate existing
approaches. The committee believes strongly that federal agencies should collaborate with the many state and
local public agencies and the national and state-level nongovernmental organizations that conduct components of
the proposed system.
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.
In a coordinated surveillance system, data are needed that can provide information on incidence and preva -
lence of relevant conditions over time; behavioral, clinical, and environmental risk factors (e.g., smoking); primary
prevention (i.e., elimination of exposures that cause these diseases); secondary prevention efforts (i.e., early detec -
tion and intervention); tertiary prevention (i.e., management of symptomatic disease); health outcomes; costs; and,
importantly, disparities in these factors by race or ethnicity, geographic region, and socioeconomic status.
Recommendation 2
The committee recommends that HHS place priorities for surveillance on 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.
4 See http://govinfo.library.unt.edu/npr/library/status/mission/mhhs.htm (accessed August 2, 2011) .
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7
SUMMARY
Many chronic cardiovascular and lung conditions have 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
framework developed by Wingo and colleagues (2005) for cancer surveillance. In this framework (Figure S-1),
the trajectory of chronic disease is integrated with the logic and practices of primary, secondary, and tertiary
prevention to provide the core of the framework. The framework organizes data from traditional, evolving, and
novel surveillance sources to reflect the development and progression of chronic conditions over a life course. It
is critical to collect data on these risk factors in order to identify precursors prior to or at the very earliest states
of disease. The design also captures the impact of prevention as both a goal and an interventional intent. Informa -
tion 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 co-occurrence of
multiple chronic health conditions in the same individual.
Recommendation 3
The committee recommends that HHS adopt the framework illustrated in Figure S-1 as a guide for
national surveillance of cardiovascular and chronic lung diseases.
Impressive gains have been achieved in life expectancy for the overall American population, as well as distinct
subpopulations defined by race and ethnicity. However, inequities in health status and health systems remain in
many neighborhoods, cities, states, and regions. The committee explored the need for data that would facilitate
understanding of the effects of race and ethnicity on health and health outcomes and concluded that it would endorse
the recommendations of the IOM report Race, Ethnicity, and Language Data: Standardization for Health Care
Quality Improvement (2009). That report recommends that organizations collecting data related to health and heath
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 S-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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8 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES
care should not only use the OMB race and Hispanic ethnicity categories but also select other ethnicity categories
to include from a national standard set.
An effective national surveillance system will require more effective and efficient linkages of conventional
surveillance data to contextually relevant information, such as socioeconomic status, birthplace, acculturation,
geography, language, and health insurance. Also, to the extent possible, there should be standard definitions of key
risk factors, outcomes, and interventions as well as 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 consider-
ations as well as the ethical and privacy issues associated with the use of a unique personal health identifier and the
use of standardized case definitions and data collection elements so that results can be compared within and across
different geographical areas. Furthermore, the integrated system should be able to evolve to allow for recognition
of new disease entities, for understanding how changes in public policy affect the disease being studied, and for
determining how risk factors can have a major impact on incidence and prevalence of other diseases. Functional
capacity, quality of life, and patient engagement and action measures are needed. 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 and healthcare delivery organizations requires, 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.
Recommendation 4
The committee recommends that the group that oversees and coordinates surveillance activity be
charged with:
• 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 functions are as outlined above, a mechanism is needed to facilitate implementation
of the enhanced and integrated system as it evolves. To further an understanding of 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. While data from national surveys conducted by the federal, state, or local governments
are usually readily available, private sources of data are frequently inaccessible or accessible only with great dif -
ficulty. 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.
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;
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9
SUMMARY
• 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.
As discussed earlier, 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. The committee concluded that 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.
• 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, many of which take place at the local level,
require tracking information at multiple geographic levels—local and state as well as national. Community-
tailored survey items will be necessary to understand the extent to which conditions vary by characteristics such
as socioeconomic status, race/ethnicity, or geographic setting (e.g., urban versus rural). To foster efforts to reduce
these disparities, a surveillance system must be capable of providing 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; this requires 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.
There is great potential for the use of electronic health records (EHRs) as sources of surveillance information.
Currently, those records focus primarily on recording clinical information (e.g., diagnoses, laboratory work, and
treatments). However, behavioral, social, and physical environmental risk factors in the development of cardio -
vascular and chronic lung diseases are key to understanding the development of these diseases. The Office of the
National Coordinator for Health Information Technology (ONCHIT) is responsible for identifying the minimum
data to be collected for EHRs. ONCHIT is in a position to take action that would significantly enhance the surveil -
lance information contained in EHRs.
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10 A NATIONWIDE FRAMEWORK FOR SURVEILLANCE OF CARDIOVASCULAR AND CHRONIC LUNG DISEASES
Recommendation 9
The committee recommends that the Office of the National Coordinator for Health Information Technol-
ogy expand the minimum data for electronic health records to include behavioral, social, and environmental
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 can be analyzed by demographic variables such as race/ethnicity, socioeconomic status, and geography.
The committee believes the recommendations provided in this report lay the foundation or framework and the
basics of the infrastructure needed for integrating and enhancing current CVD and COPD surveillance activities
so that they can evolve into the complex, interdependent system needed.
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