Abstract and Keywords
This chapter summarizes key historical events and figures in the path to modern day public health surveillance in the United States and beyond. It outlines the concept and definition of surveillance and describes its importance as the foundation of public health practice. It enumerates the purposes and uses of surveillance data, which are elaborated upon in subsequent chapters. The chapter closes with a summary of the current issues in public health surveillance, including advances in information technology, analytic methods for surveillance data, the growth in possibilities for data dissemination, the application of methods to a variety of health outcomes, and increased demands on the information produced from surveillance systems.
The definition for public health surveillance most often used by the Centers for Disease Control and Prevention (CDC) is “the ongoing systematic collection, analysis, and interpretation of health-related data essential to the planning, implementation, and evaluation of public health practice, closely integrated with the timely dissemination of these data to those who need to know. The final link in the surveillance chain is the application of these data to prevention and control” (1). A surveillance system includes the functional capacity for data collection, analysis, and timely dissemination of information derived from these data to persons in public health programs who can undertake effective prevention and control activities. Although the core of any surveillance system includes the collection, analysis, and dissemination of data, the process can be understood only in the context of specific health events (e.g., hazards, exposures, risk factors, and outcomes).
You can observe a lot just by looking.
The idea of observing, recording, and collecting facts; analyzing them; and considering reasonable courses of action stems from Hippocrates (2). However, the first real public health action that can be related to surveillance probably occurred during the period of bubonic plague (early 1300s), when public health authorities boarded ships in the port near the Republic of Venice to prevent persons ill with plague-like illness from disembarking (3). Before a large-scale organized system of surveillance could be developed, however, certain prerequisites needed to be fulfilled. First, a semblance of an organized health-care system in a stable government had to exist; in the Western world, this was not achieved until the time of the Roman Empire. Second, a classification system for disease and illness had to be established and accepted; such a system only began to be functional in the 17th (p.2) century with the work of Thomas Sydenham. Finally, no adequate measurement methods were developed until that time.
Modern concepts of public health surveillance have evolved from public health activities developed to control and prevent disease in the community. In the late Middle Ages, governments in Western Europe assumed responsibility for both health protection and health care of the population of their towns and cities (4). A rudimentary system of monitoring illness led to regulations against polluting streets and public water, construction for burial and food handling, and the provision of certain types of care (5). In 1766, Johann Peter Frank advocated a more comprehensive form of public health surveillance with the system of police medicine in Germany. It covered school health, injury prevention, maternal and child health, and public water and sewage (4). In addition, Frank delineated governmental measures to protect the public’s health.
The roots of analysis of surveillance data can also be traced to the 17th century. In the 1680s, Gottfried Wilhelm von Leibniz called for establishment of a health council and the application of numeric analysis in mortality statistics to health planning (2). At approximately the same time in London, John Graunt published a book, Natural and Political Observations Made Upon the Bills of Mortality, in which he attempted to define the basic laws of natality and mortality. In his work, Graunt developed certain fundamental principles of public health surveillance, including disease-specific death counts, death rates, and the concept of disease patterns. In the next century, Achenwall introduced the term statistics, and during the next decades vital statistics became more widespread in Europe. A century later, in 1845, Thurnam published the first extensive report of mental health statistics in London.
Lemuel Shattuck and William Farr are two prominent names in the development of the concepts of public health surveillance activities. Shattuck’s 1850 report of the Massachusetts Sanitary Commission was a landmark publication that related death, infant and maternal mortality, and communicable diseases to living conditions. Shattuck recommended a decennial census, standardization of nomenclature of causes of disease and death, and a collection of health data by age, sex, occupation, socioeconomic level, and locality. He applied these concepts to program activities in the areas of immunization, school health, smoking, and alcohol abuse and introduced related concepts into the teaching of preventive medicine.
William Farr (1807–1883) is recognized as one of the founders of modern concepts of surveillance (6). As superintendent of the statistical department of the Registrar General’s office of England and Wales during 1839 through 1879, Farr concentrated his efforts on collecting vital statistics, on assembling and evaluating those data, and on reporting both to responsible health authorities and the general public.
In the United States, public health surveillance has focused historically on infectious diseases. Basic elements of surveillance were evident in Rhode Island in 1741, when the colony passed an act requiring tavern keepers to report contagious diseases among their patrons. Two years later, the colony passed a broader law requiring the reporting of smallpox, yellow fever, and cholera (7). (p.3)
Activities associated with disease reporting at the national level did not begin in the United States until 1850, when mortality statistics based on death registration and the decennial census were first published by the federal government for the entire country (8). Systematic reporting of disease in the United States began in 1874, when the Massachusetts State Board of Health instituted a voluntary plan for physicians to provide weekly reports on prevalent diseases, using a standard postcard-reporting format (9,10). In 1878, Congress authorized the forerunner of the Public Health Service (PHS) to collect morbidity data for use in quarantine measures against such pestilential diseases as cholera, smallpox, plague, and yellow fever (11).
In Europe, compulsory reporting of infectious diseases began in Italy in 1881; in Great Britain, it began in 1890. In 1893, Michigan became the first U.S. jurisdiction to require reporting of specific infectious diseases (9). Also in 1893, a law was enacted that provided for collection of information each week from state and municipal authorities throughout the United States (12). By 1901, all state and municipal laws required notification (i.e., reporting) to local authorities of selected communicable diseases, including smallpox, tuberculosis, and cholera. In 1914, PHS personnel were appointed as collaborating epidemiologists to serve in state health departments and to telegraph weekly disease reports to PHS.
In the United States, however, all states did not begin participating in national morbidity reporting until 1925, after markedly increased reporting occurred associated with the severe poliomyelitis epidemic in 1916 and the 1918 through 1919 influenza pandemic (13). A national health survey of U.S. citizens was first conducted in 1935. After a 1948 PHS study led to revision of morbidity reporting procedures, the National Office of Vital Statistics assumed the responsibility for reporting morbidity. In 1949, weekly statistics that had appeared for years in Public Health Reports began being published by the National Office of Vital Statistics. In 1952, mortality data were added to the publication that was the forerunner of the Morbidity and Mortality Weekly Report (MMWR). As of 1961, responsibility for this publication and its content was transferred to the Communicable Disease Center (now the Centers for Disease Control and Prevention).
In the United States, the authority to require notification of cases of disease resides with state legislatures. In certain states, authority is enumerated in statutory provisions; in others, authority to require reporting has been assigned to state boards of health; still other states require reports both under statutes and health department regulations. Conditions and diseases to be reported vary from state to state, as do time-frames for reporting, agencies to receive reports, persons required to report, and conditions under which reports are required (14).
The Conference (now Council) of State and Territorial Epidemiologists (CSTE) was authorized in 1951 by its parent body, the Association of State and Territorial Health Officials (ASTHO), to determine what diseases should be reported by states to PHS and to develop reporting procedures (15). Officially incorporated in 1955, CSTE meets annually and, in collaboration with CDC, recommends to its constituent members appropriate changes in morbidity reporting and surveillance, including what diseases should be reported to CDC and published in the MMWR. (p.4)
Development of The Concept of Surveillance
Until 1950, the term surveillance was restricted in public health practice to monitoring contacts of persons with serious communicable diseases (e.g., smallpox) to detect early symptoms so that prompt isolation could be instituted (16). The critical demonstration in the United States of the importance of a broader, population-based view of surveillance was made after the Francis Field Trial of poliomyelitis vaccine in 1955 (17,18). Within 2 weeks of the announcement of the results of the field trial and initiation of a nationwide vaccination program, six cases of paralytic poliomyelitis were reported through the notifiable-disease reporting system to state and local health departments; this surveillance led to an epidemiologic investigation, which revealed that these children had received vaccine produced by a single manufacturer. Intensive surveillance and appropriate epidemiologic investigations by federal, state, and local health departments identified 141 vaccine-associated cases of paralytic disease, 80 of which represented family contacts of vaccinees. Daily surveillance reports were distributed by CDC to all persons involved in these investigations. This national common-source epidemic was ultimately related to a particular lot of vaccine that had been contaminated with live poliovirus. The Surgeon General requested that the manufacturer recall all outstanding lots of vaccine and directed that a national poliomyelitis program be established at CDC. Had the surveillance program not been in existence, many, and perhaps all, vaccine manufacturers would have ceased production for vaccines against polio.
In 1963, Alexander Langmuir advocated limiting the use of the term surveillance to the collection, analysis, and dissemination of data (19). Langmuir, the chief epidemiologist at CDC for more than 20 years, made pivotal contributions to public health surveillance that ultimately defined modern practice throughout the world (20). This construct did not encompass direct responsibility for control activities. In 1965, the Director General of the World Health Organization (WHO) established the epidemiologic surveillance unit in the Division of Communicable Diseases of WHO (21). The Division Director, Karel Raska, defined surveillance much more broadly than Langmuir, including “the epidemiological study of disease as a dynamic process.” In the case of malaria, he saw epidemiologic surveillance as encompassing control and prevention activities. Indeed, the WHO definition of malaria surveillance included not only case detection but also the obtaining of blood films, drug treatment, epidemiologic investigation, and follow-up (22), akin to what is defined currently as biosurveillance (described in Chapter 14).
In 1968, the 21st World Health Assembly focused on national and global surveillance of communicable diseases, applying the term to the diseases themselves rather than to the monitoring of persons with communicable disease (23). After an invitation from the Director General of WHO and with consultation from Raska, Langmuir developed a working paper, and in the year before the 1968 Assembly, he obtained comments from throughout the world on the concepts and practices advocated in the paper. At the Assembly, with delegates from approximately 100 countries, the working paper was endorsed, and discussions on the national and global surveillance of communicable disease identified three main features of (p.5) surveillance that Langmuir had described in 1963: (a) the systematic collection of pertinent data, (b) the orderly consolidation and evaluation of these data, and (c) the prompt dissemination of results to those who need to know—particularly those in position to take action.
The 1968 World Health Assembly discussions reflected the broadened concepts of epidemiologic surveillance and addressed the application of the concept to public health problems other than communicable disease (22). In addition, epidemiologic surveillance was said to imply “…the responsibility of following up to see that effective action has been taken.”
Since that time, multiple health events (e.g., lead poisoning among children, leukemia, congenital malformations, abortions, injuries, adverse reactions to vaccines, and behavioral risk factors) have been placed under surveillance. In 1976, recognition of the breadth of surveillance activities throughout the world was made evident by the publication of a special issue of the International Journal of Epidemiology devoted to surveillance (24).
Surveillance in Public Health Practice
The primary function of the application of the term epidemiologic to surveillance, which first appeared in the 1960s in association with the newly created WHO unit of that name, was to distinguish this activity from other forms of surveillance (e.g., military intelligence) and to reflect its broader applications. Use of the term epidemiologic, however, engenders both confusion and controversy. In 1971, Langmuir noted that certain epidemiologists tended to equate surveillance with epidemiology in its broadest sense, including epidemiologic investigations and research (16). He found this “both epidemiologically and administratively unwise,” favoring a description of surveillance as “epidemiological intelligence.”
What are the boundaries of surveillance practice? Is epidemiologic an appropriate modifier of surveillance in the context of public health practice? To address these questions, we must first examine the structure of public health practice. One can divide public health practice broadly into surveillance; epidemiologic, behavioral, and laboratory research; service delivery (including program evaluation); and training. Surveillance information should be used to identify research and service needs, which, in turn, help to define training needs. Unless this information is provided to those who set policy and implement programs, its use is limited to archives and academic pursuits, and the material is therefore appropriately considered to be health information rather than surveillance information. However, surveillance does not encompass epidemiologic research or service, which are related but independent public health activities that might not be based on surveillance. Thus, the boundary of surveillance practice excludes actual research and implementation of delivery programs.
Because of this separation, we do not use epidemiologic to modify surveillance (25); rather, the term public health surveillance describes the scope (surveillance) and indicates the context in which it occurs (public health). It also obviates the need to accompany any use of the term epidemiologic surveillance with a list of (p.6) all the examples this term does not cover. Surveillance is correctly—and necessarily—a component of public health practice and should continue to be recognized as such.
Purposes And Uses of Public Health Surveillance Data
Public health surveillance information is used to assess public health status, track conditions of public health importance, define public health priorities, evaluate programs, and develop public health research. Surveillance information aids the health officer in identifying where the problems are, whom they affect, and where programmatic and prevention activities should be directed. Such information can also be used to help define public health priorities in a quantitative manner and also in evaluations of the effectiveness of programmatic activities. Analysis of public health surveillance data also enables researchers to generate hypotheses to identify areas for further investigation (26).
The basic analysis of surveillance data is, in principle, simple. Data are examined by measures of time, place, and person. The routine collection of data about reported cases of congenital syphilis in the United States, for example, reflects not only numbers of cases (Fig. 1–1), geographic distribution, and populations affected but also reflects the steady decline of congenital syphilis since the early 1990s, with a less consistent pattern in primary and secondary syphilis in those years, partly because of a resurgence in the disease in men who have sex with men. Examination of routinely collected data reveals rates of salmonellosis by county in New Hampshire and in three contiguous states. Mapping these data illustrates the pattern of the occurrence of disease across state boundaries (Fig. 1–2). Examination of homicide-related death certificates identifies groups at high risk and demonstrates that the problem has reached epidemic proportions among young adult men (Fig. 1–3).
The uses of surveillance are illustrated in Table 1–1. Portrayal of the natural history of disease can be illustrated by the surveillance of malaria rates in the United States since 1930 (Fig. 1–4). In the 1940s, malaria was still an endemic health problem in the southeastern United States to the degree that persons with febrile illness were often treated for malaria until further tests were available. After the Malaria Control in the War Areas Program led to the virtual elimination of endemic malaria from the United States, rates of malaria decreased until the early 1950s, when military personnel involved in the conflict in Korea returned to the United States with malaria. The general downward trend in reported cases of malaria continued into the 1960s until, once again, numbers of cases of malaria increased, this time among veterans returning from the war in Vietnam. Since that (p.7)
Surveillance information also can be used to detect epidemics. For example, during the swine influenza immunization program in 1976, a surveillance system was established to detect adverse sequelae related to the program (27). Working with state and local health departments, CDC was able to detect an epidemic of Guillain–Barré syndrome, which led rapidly to termination of a program in which 40 million U.S. citizens had been vaccinated. In fact, the majority of epidemics have not been detected by such analysis of routinely collected data but are identified through the astuteness and alertness of clinicians and community public (p.9)
Table 1–1 Uses of Surveillance
Distribution and spread of disease can be documented from surveillance data, as observed in the county-specific data regarding salmonellosis (Fig. 1–2). Cancer mortality statistics in the United States have also been mapped at the county level to identify selected geographic patterns that indicate hypotheses on etiology and risk (30). Recognition of such patterns can lead to further epidemiologic or laboratory research, sometimes using persons identified in surveillance as subjects in epidemiologic studies. The association between the periconceptual use of multivitamins by women and the development of neural tube defects by their children was documented by using children identified through a surveillance system for congenital malformations (31).
Surveillance information can also be used to develop and test hypotheses. For example, in 1978, PHS announced a measles elimination program that included an active effort to vaccinate school-age children. Because of this program and the state laws that excluded school students who had not been vaccinated, CDC anticipated a change in the age pattern of persons reported to have measles. Before the initiation of the program, the highest reported rates of measles were for children aged 10 through 14 years. As predicted, almost immediately after the school exclusion policy was implemented, not only did an overall decrease in the number of cases occur, but a shift in peak occurrence occurred from school-age to preschool-age children (Fig. 1–5). By 1979, the measles incidence was even lower, and age-specific patterns had been altered.
Surveillance information can be used in evaluating control and prevention measures. With information derived from routinely collected data, one can examine—without special studies—the effect of a health policy. For example, the (p.10)
Efforts to monitor changes in infectious agents have been facilitated by using surveillance data. In the late 1970s, antibiotic-resistant gonorrhea was introduced into the United States from Asia. Laboratory and clinical practice-based surveillance for cases of gonorrhea enabled public health officials to monitor the rapid diffusion of multiple strains of this bacterium nationally, and surveillance (p.11)
As noted earlier, the first use of surveillance was for monitoring persons with a view of imposing isolation and quarantine as necessary. Although this use of surveillance is now rare in the United States, in 1975—with the introduction of a suspected case of Lassa fever—approximately 500 potential contacts of the patient were monitored daily for 2 weeks to ensure that secondary spread of this serious infection did not occur (32).
Surveillance information can also be used to good effect for detecting changes in health practice. The increasing use of technologies in health care has become a growing concern during the past decade; surveillance information can be useful in this area (33). For example, since 1965, the rate of cesarean delivery in the United States has increased from less than 5% to approximately 30% of all deliveries (Fig. 1–8). This kind of information is useful both in planning research to learn the causes of these changes and in monitoring the impact of such changes in practice and procedure on outcomes and costs associated with health care.
Surveillance information is useful for population health planning. With knowledge about changes in the population structure or in the nature of conditions that might affect a population, officials can, with more confidence, plan for optimizing available resources. For example, information about refugees who entered (p.12)
Finally, data from surveillance systems are used for appropriation and allocation of billions of U.S. dollars each year for care, treatment, and prevention of a variety of conditions. HIV surveillance data in the United States is used by the U.S. Congress annually to allocate billions of dollars in care and treatment for persons living with HIV/AIDS through the Ryan White Care Act to state and local organizations that provide need-based care to millions of persons in all states in the county (34).
Current Issues in Public Health Surveillance
During the 21st century, certain activities continue to contribute to the evolution of public health surveillance. First, use of the computer continues to revolutionize the practice of public health surveillance. In the United States, by the early 1990s, the National Electronic Telecommunications System for Surveillance (NETSS) had linked all state health departments by computer for the routine collection, analysis, and dissemination of information on notifiable health conditions (35). The Minitel system used in France has also demonstrated the essential utility of office-based surveillance for multiple conditions of public health importance (36). The transition to integrated electronic disease surveillance systems has continued to accelerate; by 2007, a total of 38 states and the District of Columbia were using secure, Internet-based systems for entry of notifiable disease reports that include an integrated data repository, electronic laboratory result reporting, and (p.13) an Internet-based browser (personal communication, Scott Danos, MPH, CDC, 2008). Forty-one states and the District of Columbia receive laboratory test results through an automated electronic laboratory results system. The Internet-based system enables immediate data access by state and local health departments, as well as CDC; certain state systems automatically send e-mail and telephone messages to public health offices in the event of an urgent laboratory report (37).
A principle goal of both the National Electronic Disease Surveillance System (NEDSS) and the Public Health Information Network (PHIN) is the use of standard systems to exchange information between the clinical and public health practice sectors. Use of secure, Internet-based systems enables public health response 24 hours a day, 7 days a week. This improves state and local capacity to manage workloads and increases capacity during disasters and epidemics. Public health informatics is an emerging discipline that promotes sharing and use of health data through the rapidly evolving fields of information science, engineering, and technology (38) (see Chapter 5). Informatics contributions to public health surveillance include data standards, a communications infrastructure, and policy-level agreements on data access, sharing, and burden reduction (39). Along with epidemiology and statistics, informatics has become a critical science in the practice of surveillance, and the contributions of this emerging science are anticipated to be of increasing importance.
A distributed system of coordinated, timely, and useful multisource public health surveillance and health information can be readily developed. Integration of independently developed, disease-specific, or source-specific surveillance systems is a critical element in implementing such a system. Similar systems are used today in finance, travel, and retail marketing, but no such system is used routinely in public health practice in the United States. The technology and the majority of the necessary data are available; however, to make these data useful, our society must have sufficient commitment to develop and maintain such a distributed system for public health. This commitment must be underscored by the recognition and acceptance of the needs for both community health and individual privacy and confidentiality (40) (see Chapter 9).
The second area of renewed activity associated with surveillance is that of epidemiologic and statistical analysis. A byproduct of using computers is the ability to make more effective use of sophisticated tools to detect changes in patterns of occurrence of health problems. In the 1980s, applications and methods of time-series analysis and other techniques have enabled us to provide more meaningful interpretation of data collected during surveillance efforts (41). More sophisticated techniques such as geographical/spatial methods and space–time monitoring will no doubt continue to be applied in the area of public health as they are developed (see Chapter 6).
Until recently, surveillance information was disseminated as written documents published periodically by government agencies. Although paper reports will continue to be produced and the use of print media will continue to be refined, public health officials also use such electronic media as the MMWR for disseminating surveillance information (42). More effective use of electronic media and all the other tools of communication should facilitate use of surveillance information for (p.14) public health practice. Meanwhile, ready access to detailed information related to individual persons will continue to provide ethical and legal concerns that might constrain access to data of potential public health importance (43).
The 1990s saw surveillance concepts applied to such new areas of public health practice as chronic disease (44), environmental (45) and occupational health (46), emerging infectious diseases (47), injury control (48), and risk behaviors (49). In 1998, recognition of the importance of surveillance in preventing intentional injuries was underscored by the publication of a special issue of the American Journal of Preventive Medicine devoted to firearm-related injury surveillance (50). Evolution and development of methods for these programmatic areas will continue to be a major challenge for public health practice. In addition, changes in the organization of medical practice (e.g., emergence of managed care in the United States) will affect the way data are collected and used in public health practice (51). A more fundamental principle that will underlie the ongoing development of surveillance is the increasing ability of people to view public health surveillance as a scientific endeavor (52). A growing appreciation of the need for high standards in the practice of surveillance will improve the quality of surveillance programs and will therefore facilitate the analysis and use of surveillance information. An important result of this more vigorous approach to surveillance practice will be the increased frequency and quality of the evaluation of the practice of surveillance (53).
Finally, and possibly most important, surveillance should be used more consistently and thoughtfully by policymakers. Epidemiologists not only need to improve the quality of their analysis, interpretation, and display information for public health use, they also need to listen to persons who are empowered to set policy to understand what stimulates the policymakers’ interests and actions. In turn, policymakers as well as public health officials and researchers should describe their needs for surveillance information. This allows surveillance information to be crafted so that it is presented in its most useful form to the appropriate audience and in the necessary time-frame (see Chapter 7). As we maximize the utility of the concept of “data for decision making” and better understand what is essential to that process, we will raise the practice of public health surveillance to a new and higher level of importance.
Public health surveillance is a cornerstone of public health practice, providing accurate and timely data that are essential to informed decision making and action. Surveillance is the foundation of all public health practice, and we must continue to develop methodologically sound systems that yield high-quality, useful data that inform policy and practice. New technology, innovations in surveillance methods, informatics, renewed interest in redesign of the health system in the United States, and the focus on emergency response challenge us to be creative and thoughtful as we move surveillance science forward. In this effort, we must have rigorous evaluation of public health surveillance systems. To do this completely, one must understand fully the principles of surveillance and its role in guiding epidemiologic research and influencing other aspects of the overall mission of public health. Epidemiologic, statistical, and informatics methods must continue to evolve for application to public health surveillance practice; the most appropriate computer (p.15) technology for efficient data collection, analysis, and graphic display must be applied; ethical, policy, and legal concerns must be addressed effectively; the use of surveillance systems must be evaluated routinely; and surveillance principles must be applied to emerging areas of public health practice.
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