REPORT BRIEF  JULY 2011                                                       For more information visit www.iom.edu/surve...
Survey of Common Surveillance                               records are sent to the National Center for HealthTools       ...
In its design, HHS should work to                                                                                  develop...
Committee on a National Surveillance System for                                    ConclusionCardiovascular and Select Chr...
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National Surveillence Systems 2011 Report Brief

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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.

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National Surveillence Systems 2011 Report Brief

  1. 1. REPORT BRIEF  JULY 2011 For more information visit www.iom.edu/surveillanceframeworkA NationwideFramework forSurveillance ofCardiovascular andChronic Lung DiseasesChronic diseases, such as cardiovascular disease and chronic lung disease,are common and costly, yet they also are among the most preventable healthproblems. Surveillance systems focused on chronic diseases have a potentiallykey role in reducing this health toll. Currently, surveillance data are collectedfrom a variety of sources, often with beneficial results. But a critical link ismissing: there is no surveillance system that operates on a national basis andin a coordinated manner to integrate current and emerging data on chronicdiseases 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 basisLung, and Blood Institute of the National Institutes of Health, and the Division and in a coordinated manner tofor Heart Disease and Stroke Prevention of the Centers for Disease Control integrate current and emergingand Prevention—turned to the Institute of Medicine (IOM) for advice. Specifi- data on chronic diseases and generate timely guidance forcally, 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 specifiedthat the system should be capable of providing data on disparities in incidenceand prevalence of the diseases by race, ethnicity, socioeconomic status, andgeographic region, along with data on disease risk factors, clinical care deliv-ery, and functional health outcomes. A Nationwide Framework for Surveillanceof Cardiovascular and Chronic Lung Diseases presents the committee’s find-ings and recommendations.
  2. 2. Survey of Common Surveillance records are sent to the National Center for HealthTools Statistics.Surveillance systems are meant to inform publichealth and clinical practitioners, policy makers, New Surveillance Tools Emergingand 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 growingation of services or policies. The ultimate aim is use of health information technologies, such asto 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 andfinite 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 usingmittee conducted a detailed assessment of the the technology. But use of EHRs is expected tovarious 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 nationalrent efforts, surveys are particularly valuable for surveillance system.learning about the prevalence and distribution In parallel, patients are recording a wealthof 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 orand their consequences. Examples include the organized care systems. This trend has its rootsBehavioral Risk Factor Surveillance System and in the emergence of the internet and new onlinethe National Health and Nutrition Examination social relationships. Increasingly, this informa-Survey. Disease-specific registries, such as the tion is being comingled with other health dataNational Cardiovascular Data Registry, are used within large electronic data stores and used forfor 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 fullya 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 issuescommunity has been monitored since 1948. must be addressed. Data also are obtained from medical recordsand from claims filed with insurance compa-nies. Both of these sources may include sufficient Steps Toward a National Surveillancedetails to provide information on the incidence Systemrate 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 berecords, which include underlying and contribut- strengthened and integrated to provide the basising causes of death and are compiled at the local of the system. The Department of Health andand state level in nearly all states, provide infor- Human Services (HHS) should take the lead, asmation on mortality trends and patterns. The it already is responsible for the funding and con- 2
  3. 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 onnate development and implementation efforts. costs, including direct medical costs and theThis 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 Departmentof 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 localgovernmental organizations involved in surveil- public health action to prevent and controllance. 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 socioeconomicthat 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 formust be flexible enough to respond to new chal- national surveillance of cardiovascular andlenges and opportunities. Among other things, the chronic lung diseases and called on HHS to adoptsystem 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. 4. Committee on a National Surveillance System for ConclusionCardiovascular and Select Chronic Diseases Without a national surveillance system, the gapsElizabeth Barrett-Connor(Chair) Elise T. Lee George Lynn Cross Research in current monitoring approaches will continue toDistinguished Professor andChief, Division of Epidemiol- Professor of Biostatistics and Epidemiology; Director, Center exist, making it more difficult to track the nation’sogy, University of CaliforniaSan Diego for American Indian Health Re- search, University of Oklahoma health status despite advances in technology andJohn Z. Ayanian Health Sciences Center data collection. A robust surveillance system willProfessor of Medicine and David M. ManninoHealth Care Policy, Harvard Professor and Director, Pulmo- serve as a benchmark for clinicians treating patientsMedical School; Professor of nary Epidemiology ResearchHealth Policy and Manage- Laboratory, University of Ken- with cardiovascular and chronic lung diseases. Itment, Harvard School ofPublic Health; Director, Harvard tucky College of Public Health will help in monitoring, evaluating, and improv- K. M. Venkat NarayanMedical School Fellowship inGeneral 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 CatalystHealth Disparities Research ology, Rollins School of Public ing the placement of resources, and it will provide Health, Emory University; Pro-Program; Harvard MedicalSchool fessor of Medicine, School of a stronger basis for advocacy and education. The Medicine, Emory UniversityE. Richard Brown Sharon-Lise T. Normand framework put forth by the IOM committee notProfessor of Health Servicesand 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 mightAngeles; Director, UCLA Centerfor Health Policy Research; Biostatistics, Department of Biostatistics, Harvard School of well become a building block for an integrated sur-Principal Investigator, CaliforniaHealth Interview Survey Public Health veillance system for the broad spectrum of chronic David J. PinskyDavid B. Coultas J. Griswold Ruth, M.D., & Mar- diseases. fVice President for Clinical and gery Hopkins Ruth ProfessorAcademic Affairs; Professor of Internal Medicine; Professorand Chair, Department of Medi- of Molecular and Integrativecine, University of Texas Health Physiology; Chief, Cardiovascu-Science Center at Tyler lar Medicine; Director, Cardio-Charles K. Francis vascular Center, University ofClinical Professor of Medicine, MichiganCardiology Division, Depart- Lorna Thorpement of Medicine, Robert Associate Professor and Pro-Wood Johnson Medical School gram Director, EpidemiologyRobert J. Goldberg and Biostatistics Program, CityProfessor and Director, Division University of New York Schoolof Epidemiology of Chronic of Public Health at HunterDiseases and Vulnerable Popu- Collegelations, University of Massachu- William M. Tierneysetts Medical School Chancellor’s Professor and SamLawrence O. Gostin Regenstrief Professor of HealthLinda D. and Timothy J. O’Neill Services Research, IndianaProfessor of Global Health Law, University School of Medicine;Georgetown University, and President and CEO, RegenstriefDirector, World Health Organi- Institute, Inc.zation Collaborating Center on Paul J. WallacePublic Health Law and Human The Lewin Group, Senior ViceRights President and Director, CenterThomas E. Kottke for Comparative EffectivenessMedical Director for Evidence- ResearchBased Health, HealthPartners;Senior Clinical Investigator,HealthPartners ResearchFoundation; Professor of Medi-cine, University of Minnesota;Cardiologist, Regions HospitalHeart Center, HealthPartnersMedical GroupStudy StaffLyla M. Hernandez Angela MartinStudy Director Senior Project Assistant (fromNora Hennessy Nov 2010)Associate Program Officer Rose Marie MartinezSuzanne Landi Director, Board on Popula-Senior Project Assistant tion Health and Public Health(through Nov 2010) Practice 500 Fifth Street, NW Washington, DC 20001Study Sponsor TEL 202.334.2352 FAX 202.334.1412The Robert Wood Johnson Foundation www.iom.edu The Institute of Medicine serves as adviser to the nation to improve health. Established in 1970 under the charter of the National Academy of Sciences, the Institute of Medicine provides independent, objective, evidence-based advice to policy makers, health professionals, the private sector, and the public. Copyright 2011 by the National Academy of Sciences. All rights reserved.

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