Surveillance systems are meant to inform public health and clinical practitioners, policy makers, and the general public of the scope, magnitude, and cost of a health problem in order to influence priority setting, program development, and evalu- ation of services or policies. The ultimate aim is to catalyze actions to reduce morbidity and mor- tality and improve health, within a framework of finite resources used in an efficient and cost-effec- tive way.

1. REPORT BRIEF JULY 2011
For more information visit www.iom.edu/surveillanceframework
A Nationwide
Framework for
Surveillance of
Cardiovascular and
Chronic Lung Diseases
Chronic diseases, such as cardiovascular disease and chronic lung disease,
are common and costly, yet they also are among the most preventable health
problems. Surveillance systems focused on chronic diseases have a potentially
key role in reducing this health toll. Currently, surveillance data are collected
from a variety of sources, often with beneficial results. But a critical link is
missing: there is no surveillance system that operates on a national basis and
in a coordinated manner to integrate current and emerging data on chronic
diseases and generate timely guidance for stakeholders at the local, state,
regional, and national levels. . . . there is no surveillance system
To help close this gap, two federal health agencies—the National Heart, that operates on a national basis
Lung, and Blood Institute of the National Institutes of Health, and the Division and in a coordinated manner to
for Heart Disease and Stroke Prevention of the Centers for Disease Control integrate current and emerging
and Prevention—turned to the Institute of Medicine (IOM) for advice. Specifi- data on chronic diseases and
generate timely guidance for
cally, the agencies asked the IOM to appoint a study committee to develop a
stakeholders at the local, state,
framework for building a national chronic disease surveillance system focused regional, and national levels.
primarily on cardiovascular and chronic lung diseases. The agencies specified
that the system should be capable of providing data on disparities in incidence
and prevalence of the diseases by race, ethnicity, socioeconomic status, and
geographic region, along with data on disease risk factors, clinical care deliv-
ery, and functional health outcomes. A Nationwide Framework for Surveillance
of Cardiovascular and Chronic Lung Diseases presents the committee’s find-
ings and recommendations.

2. Survey of Common Surveillance records are sent to the National Center for Health
Tools Statistics.
Surveillance systems are meant to inform public
health and clinical practitioners, policy makers,
New Surveillance Tools Emerging
and the general public of the scope, magnitude,
and cost of a health problem in order to influence Notably, the committee points to new surveil-
priority setting, program development, and evalu- lance tools that are emerging with the growing
ation of services or policies. The ultimate aim is use of health information technologies, such as
to catalyze actions to reduce morbidity and mor- electronic health records (EHRs), which can eco-
tality and improve health, within a framework of nomically and completely capture care events and
finite resources used in an efficient and cost-effec- processes. Expanding the use of EHRs in surveil-
tive way. lance will have challenges, including the relatively
To underpin its deliberations, the IOM com- low numbers of hospitals and practices now using
mittee conducted a detailed assessment of the the technology. But use of EHRs is expected to
various data sources and tools that could be use- expand as health care reforms advance, necessi-
ful in a national surveillance system. Among cur- tating their inclusion when planning for a national
rent efforts, surveys are particularly valuable for surveillance system.
learning about the prevalence and distribution In parallel, patients are recording a wealth
of chronic diseases, as well as about associated of health data on their own, with or without ini-
risk factors that may contribute to the diseases tiation or direct support from health providers or
and their consequences. Examples include the organized care systems. This trend has its roots
Behavioral Risk Factor Surveillance System and in the emergence of the internet and new online
the National Health and Nutrition Examination social relationships. Increasingly, this informa-
Survey. Disease-specific registries, such as the tion is being comingled with other health data
National Cardiovascular Data Registry, are used within large electronic data stores and used for
for capturing data on individual patients. Cohort population surveillance, performance assess-
studies are valuable in following—prospectively or ment, predictive modeling, and care manage-
retrospectively—large groups of people who share ment. Although these sources have yet to be fully
a common characteristic or experience. Through assessed, the potential is great that some, if not all,
the Framingham Heart Study, for example, the of them may complement and extend chronic dis-
heart health of residents in this Massachusetts ease surveillance efforts, although privacy issues
community has been monitored since 1948. must be addressed.
Data also are obtained from medical records
and from claims filed with insurance compa-
nies. Both of these sources may include sufficient Steps Toward a National Surveillance
details to provide information on the incidence System
rate of a chronic condition, the types of services
The committee concludes that a coordinated sur-
that patients receive, and the social characteris-
veillance system is needed and that existing sur-
tics of people who receive services. Also, death
veillance data collection efforts can and should be
records, which include underlying and contribut-
strengthened and integrated to provide the basis
ing causes of death and are compiled at the local
of the system. The Department of Health and
and state level in nearly all states, provide infor-
Human Services (HHS) should take the lead, as
mation on mortality trends and patterns. The
it already is responsible for the funding and con-
2

3. In its design, HHS should work to
develop a system that can provide
various types of data that
individually and collectively can be
used to understand the continuum
of disease prevention, progression,
treatment, and outcomes.
duct of numerous surveillance efforts and can secondary prevention, such as early detec-
bring together stakeholders from both the public tion and intervention; and on tertiary pre-
and private sectors, as well as from multiple geo- vention to manage symptomatic disease;
graphic levels. HHS should establish and support • health outcomes following surveillance,
a national working group to oversee and coordi- including changes in quality of life, and on
nate development and implementation efforts. costs, including direct medical costs and the
This group should include representatives from indirect costs of lost productivity, earnings,
HHS and other relevant federal agencies, such as and social burden;
the Veterans Administration and the Department
of Defense, as well as representatives from tribal, • representative samples and data (e.g., at the
state, and local public health agencies and non- substate or county level) to support local
governmental organizations involved in surveil- public health action to prevent and control
lance. chronic diseases; and
In its design, HHS should work to develop • disparities in these factors by race or ethnic-
a system that can provide various types of data ity, geographic region, and socioeconomic
that individually and collectively can be used to status.
understand the continuum of disease prevention,
Among other recommendations, the com-
progression, treatment, and outcomes. It also
mittee presented a conceptual framework for
must be flexible enough to respond to new chal-
national surveillance of cardiovascular and
lenges and opportunities. Among other things, the
chronic lung diseases and called on HHS to adopt
system HHS should develop needs to include data
it. The framework organizes data from traditional,
in the following areas:
evolving, and novel surveillance sources to reflect
• incidence and prevalence of cardiovascular the development and progression of chronic con-
and chronic lung disease over time, which ditions over the life course, and also captures
will enable tracking of progress in reaching the importance of disease prevention. Informa-
established national health goals, such as tion collected throughout this framework can be
those detailed in the government’s Healthy assembled into both specific and general metrics
People reports; to inform practices at all levels of the health care
• primary prevention, including the reduc- system as well as the deliberations of policy mak-
tion of behavioral, clinical, and other risk ers in multiple roles.
factors associated with cardiovascular and
chronic lung diseases and conditions; on
3

4. Committee on a National Surveillance System for Conclusion
Cardiovascular and Select Chronic Diseases
Without a national surveillance system, the gaps
Elizabeth Barrett-Connor
(Chair)
Elise T. Lee
George Lynn Cross Research
in current monitoring approaches will continue to
Distinguished Professor and
Chief, Division of Epidemiol-
Professor of Biostatistics and
Epidemiology; Director, Center
exist, making it more difficult to track the nation’s
ogy, University of California
San Diego
for American Indian Health Re-
search, University of Oklahoma
health status despite advances in technology and
John Z. Ayanian Health Sciences Center data collection. A robust surveillance system will
Professor of Medicine and David M. Mannino
Health Care Policy, Harvard Professor and Director, Pulmo- serve as a benchmark for clinicians treating patients
Medical School; Professor of nary Epidemiology Research
Health Policy and Manage- Laboratory, University of Ken- with cardiovascular and chronic lung diseases. It
ment, Harvard School of
Public Health; Director, Harvard
tucky College of Public Health
will help in monitoring, evaluating, and improv-
K. M. Venkat Narayan
Medical School Fellowship in
General Medicine and Primary
Ruth and O.C. Hubert Professor ing policies, programs and services and in direct-
of Global Health and Epidemi-
Care; Director, Harvard Catalyst
Health Disparities Research
ology, Rollins School of Public ing the placement of resources, and it will provide
Health, Emory University; Pro-
Program; Harvard Medical
School
fessor of Medicine, School of a stronger basis for advocacy and education. The
Medicine, Emory University
E. Richard Brown Sharon-Lise T. Normand
framework put forth by the IOM committee not
Professor of Health Services
and Community Health Sci-
Professor of Health Care Policy
(Biostatistics), Department of
only could help with tracking and monitoring car-
ences, School of Public Health,
University of California Los
Health Care Policy, Harvard
Medical School; Professor of
diovascular and chronic lung disease but might
Angeles; Director, UCLA Center
for Health Policy Research;
Biostatistics, Department of
Biostatistics, Harvard School of
well become a building block for an integrated sur-
Principal Investigator, California
Health Interview Survey
Public Health veillance system for the broad spectrum of chronic
David J. Pinsky
David B. Coultas J. Griswold Ruth, M.D., & Mar- diseases. f
Vice President for Clinical and gery Hopkins Ruth Professor
Academic Affairs; Professor of Internal Medicine; Professor
and Chair, Department of Medi- of Molecular and Integrative
cine, University of Texas Health Physiology; Chief, Cardiovascu-
Science Center at Tyler lar Medicine; Director, Cardio-
Charles K. Francis vascular Center, University of
Clinical Professor of Medicine, Michigan
Cardiology Division, Depart- Lorna Thorpe
ment of Medicine, Robert Associate Professor and Pro-
Wood Johnson Medical School gram Director, Epidemiology
Robert J. Goldberg and Biostatistics Program, City
Professor and Director, Division University of New York School
of Epidemiology of Chronic of Public Health at Hunter
Diseases and Vulnerable Popu- College
lations, University of Massachu- William M. Tierney
setts Medical School Chancellor’s Professor and Sam
Lawrence O. Gostin Regenstrief Professor of Health
Linda D. and Timothy J. O’Neill Services Research, Indiana
Professor of Global Health Law, University School of Medicine;
Georgetown University, and President and CEO, Regenstrief
Director, World Health Organi- Institute, Inc.
zation Collaborating Center on Paul J. Wallace
Public Health Law and Human The Lewin Group, Senior Vice
Rights President and Director, Center
Thomas E. Kottke for Comparative Effectiveness
Medical Director for Evidence- Research
Based Health, HealthPartners;
Senior Clinical Investigator,
HealthPartners Research
Foundation; Professor of Medi-
cine, University of Minnesota;
Cardiologist, Regions Hospital
Heart Center, HealthPartners
Medical Group
Study Staff
Lyla M. Hernandez Angela Martin
Study Director Senior Project Assistant (from
Nora Hennessy Nov 2010)
Associate Program Officer Rose Marie Martinez
Suzanne Landi Director, Board on Popula-
Senior Project Assistant tion Health and Public Health
(through Nov 2010) Practice 500 Fifth Street, NW
Washington, DC 20001
Study Sponsor TEL 202.334.2352
FAX 202.334.1412
The Robert Wood Johnson Foundation
www.iom.edu
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Copyright 2011 by the National Academy of Sciences. All rights reserved.