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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary Summary and Assessment GLOBAL INFECTIOUS DISEASE SURVEILLANCE AND DETECTION: ASSESSING THE CHALLENGES—FINDING SOLUTIONS Early detection is essential to the control of emerging, reemerging, and novel infectious diseases, whether naturally occurring or intentionally introduced. Containing the spread of such diseases in a profoundly interconnected world requires active vigilance for signs of an outbreak, rapid recognition of its presence, and diagnosis of its microbial cause, in addition to strategies and resources for an appropriate and efficient response. Although these actions are often viewed in terms of human public health, they also challenge the plant and animal health communities. Surveillance, defined as “the continual scrutiny of all aspects of occurrence and spread of a disease that are pertinent to effective control” (IOM, 2003; Last, 1995; WHO, 2000), involves the “systematic collection, analysis, interpretation, and dissemination of health data” (WHO, 2000). Disease detection and diagnosis is the act of discovering a novel, emerging, or reemerging disease or disease event and identifying its cause. Diagnosis is “the cornerstone of effective disease control and prevention efforts, including surveillance” (IOM, 2003). Disease surveillance and detection relies heavily on the astute individual: the clinician, veterinarian, plant pathologist, farmer, livestock manager, or agricultural extension agent who notices something unusual, atypical, or suspicious and brings this discovery in a timely way to the attention of an appropriate representative of human public health, veterinary medicine, or agriculture. Most developed countries have the ability to detect and diagnose human, animal, and plant diseases The Forum’s role was limited to planning the workshop, and the workshop summary has been prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop.
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary and have some type of active or passive surveillance for many well-characterized agents. However, many developing countries—where most of the global population resides—lack the resources or infrastructure to support such activities. One way to close this gap in infectious disease surveillance and detection may lie with the dispersion of technological advances such as regional syndromic surveillance, bioinformatics, and rapid diagnostic methods. Such tools and approaches have already made important contributions to infectious disease control and prevention efforts, albeit mainly in the developed world. Further improvements are expected to result from ongoing progress in infectious disease awareness and reporting, and from the continued development and deployment of efficient, low-cost diagnostic platforms. A major challenge to global disease surveillance and detection, and to this workshop, is not only the detection and reporting of well-characterized “known” infectious diseases, but also the ability to detect novel, emerging, or reemerging infectious diseases in relatively low-tech environments. There is a corresponding need to also develop redundant/ complimentary systems for infectious disease detection that go beyond the yield of the more traditional surveillance systems and approaches. The Institute of Medicine’s (IOM’s) Forum on Microbial Threats convened a workshop addressing Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions on December 12 and 13, 2006, to consider these and other scientific and policy issues relevant to the practice of disease surveillance and detection. To adequately cover a broad range of topics related to global infectious disease surveillance and detection, the Forum had to be selective in prioritizing the challenges and exploring solutions to disease detection and surveillance. While the workshop did explore a variety of conventional and novel approaches for disease surveillance and detection, the workshop organizers did not attempt to critique standard domestic disease detection approaches nor did the workshop make recommendations about what an “optimal” or “desirable” disease surveillance and detection system would look like. Workshop participants examined current and emerging methods and strategies for the surveillance, detection, and diagnosis of human, animal, and plant diseases in order to assess resource needs and opportunities for improving and coordinating global infectious disease surveillance, detection, and reporting. Organization of Workshop Summary This workshop summary was prepared for the Forum membership in the name of the rapporteurs and includes a collection of individually authored papers and commentary.1 Sections of the workshop summary not specifically attributed 1 The individually authored papers and commentaries of the speakers and participants at this workshop reflect their appreciation of disease detection and surveillance. As such, we have limited control over how the experts defined disease surveillance and detection. For our purposes, surveillance is defined on page 1.
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary to an individual reflect the views of the rapporteurs and not those of the Forum on Microbial Threats, its sponsors, or the IOM. The contents of the unattributed sections are based on the presentations and discussions at the workshop. The workshop summary is organized into chapters as a topic-by-topic description of the presentations and discussions that took place at the workshop. Its purpose is to present lessons from relevant experience, to delineate a range of pivotal issues and their respective problems, and to offer potential responses as described by workshop participants. Although this workshop summary provides an account of the individual presentations, it also reflects an important aspect of the Forum philosophy. The workshop functions as a dialogue among representatives from different sectors and presents their beliefs about which areas may merit further attention. The reader should be aware, however, that the material presented here expresses the views and opinions of the individuals participating in the workshop and not the deliberations and conclusions of a formally constituted IOM study committee. These proceedings summarize only what participants stated in the workshop and are not intended to be an exhaustive exploration of the subject matter or a representation of consensus evaluation. Surveillance Strategies The practice of infectious disease surveillance is no longer restricted to its original role in recognizing outbreaks of feared human diseases. Workshop presentations reflected diverse goals, approaches, and methodologies for disease surveillance in humans, animals, and plants. To place these presentations and ensuing discussions in context, we begin by briefly describing the multiple purposes served by public health surveillance, as well as current disease surveillance practices in animals and plants. Surveillance Purposes and Practices Public Health Surveillance In the United States, public health surveillance for infectious disease is conducted through a variety of state and federal programs (GAO, 2004). Health-care providers and others report cases of “notifiable” infectious disease (as defined by local and state health codes) to health departments; health department officials verify disease reports, monitor disease incidence, identify possible outbreaks, and forward their findings to the Centers for Disease Control and Prevention (CDC). CDC and other federal agencies, including the Food and Drug Administration (FDA), the U.S. Department of Agriculture (USDA), and the Department of Defense (DoD), independently gather and analyze information for disease surveillance. In addition, these agencies fund domestic and international networks of disease surveillance laboratories that develop diagnostic tests and conduct disease
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary diagnostic research. Although the CDC has provided guidelines for surveillance systems funded by the federal government, evaluation is generally lacking. Furthermore, as noted by Forum member Edward McSweegan, little evidence has been provided on the cost-effectiveness of massive federal public health surveillance investments (see also Eban, 2007). Early Warning Some surveillance systems are designed to provide early warning of a disease threat by detecting the mere presence of potentially infectious microorganisms. The federal BioWatch program, for example, uses a network of aerosol sampling stations to monitor major U.S. population centers for a range of potential biological agents, such as anthrax, plague, and tularemia (the entire list of pathogens is not publicly available) (Shea and Lister, 2003; OIG, 2005). The goal of this program is to detect biological agents within 36 hours of release, allowing federal, state, and local officials to organize a timely response (OIG, 2005). Surveillance also extends to symptoms indicative of infectious disease. Syndromic surveillance2—the real time monitoring of nonspecific, prediagnostic indicators for disease outbreaks—has been widely adopted by cities, states, and the federal government as a means to provide early warning of infectious disease outbreaks (Sosin, 2003; Stoto, 2005). Several syndromic surveillance systems are currently operational. The Real Time Outbreak and Disease Surveillance System (RODS) is used by several states to gather data on the symptoms of emergency room patients (GAO, 2004). The RODS laboratory at the University of Pittsburgh also created the National Retail Data Monitor (NRDM) to examine sales of over-the-counter health-care products.3 The Electronic Surveillance System for the Early Notification of Community-Based Epidemics (ESSENCE), operated by DoD, allows epidemiologists to track, in real-time, syndromes reported in daily data feeds from regional hospitals and clinics in the National Capital area (GAO, 2004). The federal BioSense program—in which the United States has invested an estimated $230 million since its 2004 inception—aggregates data relevant to bioterrorism and other public health threats from numerous electronic sources 2 The term “syndromic surveillance” applies to surveillance using health-related data that precede diagnosis and signal a sufficient probability of a case or an outbreak to warrant further public health response. Though historically syndromic surveillance has been used to target investigation of potential cases, its utility for detecting outbreaks associated with bioterrorism is increasingly being explored by public health officials (CDC, 2006a). 3 The National Retail Data Monitor (NRDM) is a public health surveillance tool that collects and analyzes daily sales data for over-the-counter health-care products. NRDM collects sales data for selected over-the-counter health-care products in near-real time from more than 15,000 retail stores and makes them available to public health officials. NRDM is one of the first examples of a national data utility for public health surveillance that collects, redistributes, and analyzes daily sales-volume data of selected health-care products, thereby reducing the effort for both data providers and health departments. For further information on the NRDM, see Wagner et al., 2004.
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary (GAO, 2004; Eban, 2007). Despite the considerable investments that have been made in domestic syndromic surveillance systems, many workshop participants noted, their promise remains largely unproven (Descenclos, 2006; Bravata et al., 2004; Reingold, 2003; RAND Corporation, 2004; Stoto, 2005; Sosin, 2003). Situational Awareness Surveillance approaches are also used to monitor the progress and outcome of an intervention to mitigate or stop the progression of a communicable disease, as during the recent severe acute respiratory syndrome (SARS) pandemic (IOM, 2004; Heymann and Rodier, 2004) and in the campaigns to eradicate smallpox (Henderson, 1999) and polio (WHO, 2006). The broad and multifaceted use of surveillance to describe and inform response over the entire course of an outbreak, known as “situational awareness,” was a central topic of workshop discussion, as noted below. Animals The practice of surveillance is not limited to human diseases. Some surveillance systems protect economically and ecologically important animal or plant species; others are designed to detect transmission of a zoonotic disease among animal and human populations over space and time, and to predict future transmission patterns. Within the complex network of federal agencies that govern animal health, separate—and in some cases, parallel—surveillance programs are conducted by USDA, Department of Homeland Security (DHS), DoD, Department of Health and Human Services (HHS), the Department of the Interior (DoI), and Department of Commerce (NRC, 2005). As noted in the recent National Research Council report, Animal Health at the Crossroads, “whether due to historic structures or functions of … related federal, state, and local governments, or because of changes and challenges in funding and resources, there is an apparent disconnect between [animal health] agencies that should function in partnership” (NRC, 2005). A further element of disintegration is introduced through the practice of disease-specific surveillance at both federal and state levels. Technological advances in disease detection that have benefited public health surveillance—such as rapid, automated, sensitive, and portable sampling and assay systems and DNA-based diagnostic tools—remain to be adapted to track animal diseases (NRC, 2005). Such tools could have significantly reduced the severe burden of recent outbreaks such as exotic Newcastle disease (END) among chickens in the United States and foot-and-mouth disease (FMD) among cattle in the United Kingdom; a recent analysis supports the use of polymerase chain reaction (PCR) to screen bulk milk for the FMD virus (Thurmond and Perez, 2006). Other early warning technologies with potential application to animal
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary disease surveillance include embedded monitoring chips to measure temperature and other physiological states, gene-based pathogen assays, and biosensors. Plants Plant disease surveillance occurs at several levels: through growers, who monitor crops for signs of disease; at the local and regional levels, by private crop consultants and USDA cooperative extension agents who diagnose disease and provide advice to growers on outbreak management; at the national level, through programs such as the National Plant Diagnostic Network (NPDN; see subsequent discussion) and BioWatch; and at the international level through collaborative research organizations such as the Consultative Group on International Agriculture Research (CGIAR) (Fletcher, 2005; Stack et al., 2006). In recent years, a broad range of molecular techniques, including PCR-based and immunological assays and DNA arrays, have been adapted to detect and track the spread of plant pathogens (Alvarez, 2004; Schaad et al., 2003). Although routine diagnosis of many crop diseases can now be made within a day by real-time PCR, there is further need to develop same-day, onsite protocols for identifying plant pathogens, as well as standardized procedures to validate diagnostic protocols (Schaad et al., 2003). In theory, earlier detection of plant pathogens could be achieved through the capture of molecular signals from pathogens in situ; however, this and related technologies are likely to be first applied to detect animal and human pathogens (Cook, 2005; Schaad et al., 2003). Public Health Surveillance: A Local Perspective The traditional model of infectious disease surveillance remains essential to public health practice, particularly at the local level. Speaker Marci Layton, of the New York City Department of Health and Mental Hygiene (DOHMH), emphasized the importance of reports—of both routine and unusual findings—by health-care providers to local health departments. The interpretation and investigation of such reports by DOHMH officials supports the identification and control of infectious disease in one of the world’s largest and most cosmopolitan cities (see Chapter 1 overview). These efforts have been boosted in recent years by the introduction of electronic reporting for laboratory results and web-based reporting by health-care providers. An alert system has also been established to inform area health-care providers of public health emergencies. Because of the high risk for disease importation into New York City, DOHMH officials stay abreast of international infectious disease trends, ramping up surveillance and alerting health-care providers in response to threatened outbreaks. The city has also invested federal funding to improve the ability of hospital triage systems to identify and appropriately treat patients who show symptoms associated with an emerging infectious disease. This is crucial, Layton observed,
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary because New York City “could be the next Toronto, with an unrecognized SARS outbreak from overseas.” Syndromic Surveillance Layton noted that many infectious disease threats (e.g., influenza, SARS, and viral encephalitis, as well as potential bioterrorism agents such as anthrax and smallpox) manifest as syndromes with nonspecific symptoms (“influenza-like symptoms”). In the case of a rapidly spreading, emerging infectious disease, laboratory diagnosis may be impossible. Under these circumstances, she said, syndromic surveillance systems can alert public health authorities to an outbreak before it is revealed in reports from health-care providers. Keynote speaker Patrick Kelley, director of the Institute of Medicine’s Board on Global Health, and presenter Michael Stoto, of the Georgetown University’s School of Nursing and Health Studies, reviewed the theoretical underpinnings and historical development of syndromic surveillance (see Kelley, Stoto in Chapter 1). When people first develop symptoms, following an exposure or first contact with a novel or rapidly emerging infectious disease, they may be much more likely to attempt to treat themselves and stay home from work or school rather than seeking care from a health-care provider to obtain a clinical or laboratory diagnosis (Stoto, 2005). Syndromic surveillance systems monitor existing descriptive data of these behaviors (e.g., school and work absenteeism, sales of over-the-counter medications, illness-related 911 calls, emergency room admissions for symptoms indicative of infectious disease) for patterns or clusters of behaviors suggestive of an illness outbreak. The concept of syndromic surveillance is doubly attractive because in addition to its potential to increase the speed and effectiveness of the public health response to natural or deliberate disease outbreaks, it costs far less to implement than traditional, labor-intensive approaches to disease surveillance (Stoto, 2005). However, the ability of syndromic surveillance to reduce disease-related morbidity and mortality remains to be demonstrated, as does its cost-effectiveness (Bravata et al., 2004; Reingold, 2003; RAND Corporation, 2004; Stoto, 2005; Sosin, 2003). Although rigorous evaluations of syndromic surveillance in general may be impossible, individual systems can be assessed under a variety of circumstances (Reingold, 2003). Moreover, because syndromic surveillance systems are warning devices, it will be critical to determine their utility within the context of health systems that respond to both “true” and “false” alarms (Pavlin, 2003; RAND Corporation, 2004). Global Syndromic Surveillance In parts of the world where clinicians are in short supply, syndromic surveillance offers a promising model for disease detection, Kelley observed (see
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary Chapter 1). Infectious disease is a major cause of morbidity and mortality in low-resource populations, and such environments frequently provide amplifying conditions for emerging pathogens. Recognition of this threat has spurred the World Health Organization (WHO) to revise the International Health Regulations (IHRs)—the legal framework for international cooperation on infectious disease surveillance. Once limited to a trio of internationally notifiable diseases (plague, cholera, and yellow fever), as of June 15, 2007, the revised IHRs became the “world’s first legally binding agreement in the fight against public health emergencies of international concern” (WHO, 2007). Reporting of new and reemerging diseases with epidemic or pandemic potential, as well as diseases associated with acute chemical or radionuclear events, will be mandatory regardless of their origin or source (WHO, 2007). “The mandate for general global public health surveillance is moving beyond named diseases to encompass a global responsibility to detect and report in a timely manner internationally important disease events, whether they are individual cases or clusters, whether they are well-defined diseases or ill-defined diseases,” Kelley explained. Syndrome detection is central to this new paradigm, and should be viewed as one of a collection of approaches to global surveillance for infectious diseases, he said. However, he also noted considerable challenges in moving syndromic surveillance from theory to practice. Syndromic Surveillance by Design Kelley emphasized that a key step in developing effective syndromic surveillance systems—and one that has frequently been overlooked—is the precise definition of system capabilities. While considerable effort has been applied to the development of syndromic definitions (e.g., for flu-like illnesses that may indicate bioterrorism), far less attention has been paid to identifying robust detectors of those conditions, he said. Moreover, rather than formulate clear and specific questions and design systems to answer them, he observed that developers of syndromic surveillance systems have too often created systems based on opportunistic datasets. In addition to appropriate data to answer essential questions, a system for public health surveillance requires powerful analytical tools, as well as technically proficient analysts to use them and accurately interpret the findings, Kelley said. He added that these considerations are equally applicable to domestic surveillance programs that, due to their complexity, might be fruitfully developed through academic partnerships with individual communities. Kelley also advocated strengthening the epidemiological capacity at the local level in order to inform the interpretation of syndromic findings in light of “local epidemiological peculiarities,” as well as to ensure a rapid response to syndromic alerts.
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary From Syndromic Surveillance to “Situational Awareness” Syndromic surveillance systems are handicapped by their very nature. Not only must they obtain relevant and accurate data quickly and from a variety of sources, but they must also be tuned to recognize unusual trends against a highly variable background; otherwise, syndromic surveillance systems may either miss an important event or generate unacceptable levels of false positives (see contributions by Kelley, Stoto in Chapter 1). Indeed, Stoto explained, according to the syndromic detection algorithm, it is impossible to increase the sensitivity, specificity, or timeliness of syndromic detection without reducing the other two attributes. This point is illustrated by a recent model of outbreak detection for inhalational anthrax by Buckeridge and colleagues (2006), who concluded that “when syndromic surveillance was sufficiently sensitive to detect a substantial proportion of outbreaks before clinical case finding, it generated frequent false alarms” (Buckeridge et al., 2006). Stoto explored several additional examples of this dilemma, all of which support his contention that traditional, statistics-based syndromic surveillance systems are unsuited to the detection of rare, small-scale events such as a localized biological attack or the initial cases of a newly imported or emerging disease. He suggested, rather, that syndromic surveillance was most likely to be valuable in detecting potentially large-scale, natural disease outbreaks (e.g., seasonal and pandemic influenza, foodborne disease) for which the useful “detection window” is relatively broad. Case-Finding by Syndrome Instead of bypassing health-care providers, Stoto said that syndromic surveillance technology could be used to “arm astute physicians and health departments with modern approaches to finding small numbers of cases” and allow health professionals to identify them before they are formally diagnosed. Such “case-finding” surveillance systems currently in operation include the Syndromic Reporting Information System (SYRIS) (ARES, 2007; Mandl et al., 2004; CDC, 2006b), Rapid Syndrome Validation Project (RSVP) (Zelicoff et al., 2001), and Lightweight Epidemiological Advanced Detection Emergency Response System (LEADERS) (Green and Kaufman, 2002). Because case-finding syndromic surveillance requires early reporting of symptoms, it can only succeed in “an atmosphere that doesn’t penalize people for getting it wrong,” Stoto said (and, as other participants noted, for getting it right, that is, for being the bearer of bad news). Under enabling conditions, he said, case-finding syndromic surveillance could build the kind of strong relationships between public health and health-care providers that are critical to effective outbreak response. “Like any alarm system, [syndromic surveillance is] only as good as what happens when the bell rings,” Stoto concluded. “It must be followed with active
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary surveillance and epidemiological investigation, and with policy decisions regarding intervention.” Speaker Joseph Lombardo, of the Johns Hopkins University Applied Physics Laboratory, further advised that syndromic surveillance systems be designed to meet the specific needs of epidemiologists and public health analysts. “The tools need to be built to support those individuals, and I believe public health informatics has a tremendous role in doing that,” he said. Situational Awareness Several workshop participants described the use of syndromic surveillance data beyond the mere detection of behavioral “signals” of an outbreak. Kelley noted that syndromic data could support efforts to characterize infectious diseases, help target outbreak response, and inform risk communication. Lombardo distinguished between syndromic surveillance, which he defined as an automated detection and alarm system, and “situational awareness,” a term long used by DoD that encompasses disease classification, tracking, response, and outcome monitoring, in addition to detection. Viewed through the lens of situational awareness, syndromic surveillance provides a rapid means to obtain descriptive data throughout the course of an infectious disease outbreak. Epidemiologists and others who monitor surveillance findings represent “the most important component of an advanced disease surveillance system,” Lombardo insisted. “They cannot be replaced by statistics.” Real-Time and Batched Reporting In addition to collecting strategic data, well-designed public health surveillance systems incorporate appropriate mechanisms to process information and deliver it to users. The computational performance of these tasks may occur in “real time” or it may be “batched,” according to Lombardo, who explained the implications of these descriptions for infectious disease surveillance (see Chapter 1). Real-time computing methods (presently used in video games and automotive safety systems) permit an immediate response to surveillance data, Lombardo said. Batching may occur at any of several junctures along the path from data collection to reporting, he explained; the term “batched reporting” may therefore reflect the simultaneous collection of multiple data points, or the contemporaneous processing of data collected at different times, or the reporting, at regular intervals, of the outcome of sequentially processed data. Batched health data may be reported to users as soon as it is processed, at regular intervals, or accessed on demand. Breaking the electronic surveillance process into a series of steps, Lombardo compared the potential and consequences for real-time and batched reporting. Only certain syndromic surveillance data are available in real time, he noted.
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary For example, while cash registers transmit medication purchases immediately, schools report absenteeism on a daily basis. Moreover, he observed, “the benefits of real-time data collection are only realized if the other components of a surveillance system are real-time as well.” Data may be continuously communicated for processing via a virtual private network (used in some hospitals), or it may be sent by file transfer protocol as batched files in intervals of seconds to hours. At the data processing step, the distinction between real time and batched may not be meaningful if computation is complex and therefore time consuming, Lombardo observed. For example, a spatial analysis of disease phenomena across a series of ZIP codes could take a long time to process; however, surveillance systems can allow analysts selectively to invoke certain processes in real time in order to monitor a potentially urgent situation. Surveillance reports can be delivered in real time, in the form of automatic alerts, but Lombardo described considerable problems with this feature. As previously noted, many reports that are based on syndromic data represent false positives and will therefore require an epidemiologist’s attention and expertise to discern a true signal among considerable background noise. This can take time. Unless surveillance reports are subject to continuous analysis, it makes no sense to invest resources in providing them on a real-time basis, Lombardo concluded. “Getting information several times an hour should be more than adequate for public health needs,” he said. To provide for public health emergencies, he envisioned two modes of operation for advanced disease surveillance systems: batched reporting for routine analysis, and real-time reporting, which would be based on case definition and used for more focused surveillance during a crisis. Animal Disease Surveillance Two important factors contribute to the proliferation of zoonotic diseases: the explosive growth of human and domestic animal populations, and the increasingly close physical proximity within which humans and domestic and wild animals live (Karesh and Cook, 2005; NRC, 2005). Infectious diseases primarily affecting animals can have both direct and indirect impacts on humans (Table SA-1), including significant economic consequences (Figure SA-1). Therefore it is widely acknowledged that the timely identification of future emerging microbial threats (on the order of SARS, West Nile virus, or H5N1 avian influenza) will require an integrated international approach to disease surveillance. Progress toward this goal has been hampered by a variety of economic and political factors, most notably the threat of trade embargoes against countries that voluntarily report livestock or wildlife disease outbreaks. Although they share comparable objectives, the U.S. animal health community lags far behind its public health counterpart in terms of surveillance infrastructure and technology (NRC, 2005). These deficits were raised in several
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary The Challenge of Coordination Workshop participants, having considered a broad range of tools and strategies for infectious disease surveillance, detection, and diagnosis, turned to the difficult issue of effectively combining them. Hueston, director of the University of Minnesota’s Center for Animal Health and Food Safety, launched this discussion with his presentation on the coordination of disease surveillance, detection, diagnostics, and reporting. This topic is a frequent focus of Hueston’s work, which emphasizes risk communication and the facilitation of public–private partnerships (see Chapter 4). Shifting the Public Health Paradigm Certain powerful concepts and conditions that influence the practice of public health inhibit the coordination of infectious disease surveillance, detection, and diagnosis, according to Hueston. Table SA-2 summarizes these elements of the current public health paradigm, as defined by Hueston, and pairs them with his proposed alternatives. Hueston identified several factors driving the current paradigm that specifically undermine public health coordination. Chief among them is high health TABLE SA-2 Current Public Health Paradigm and Alternative World View Current Paradigm Alternative World View Health focus is individual; benefits accrue primarily to the developed world Health focus is global society; benefits accrue to all Health is absence of disease Health is well-being (in mind, body, spirit) Infectious disease is all about the agent Infectious disease emerges at the convergence of agent, host, environment Zero risk is achievable Zero risk is unachievable; risk management is the goal Success is eradication/cure Success is homeostasis with microbes that are ubiquitous, constantly evolving, and adapting Public health function is to react Public health function is health promotion Reaction requires agent detection Risk management can be successful whether or not microbe is identified Urgency dictates priority Surveillance informs policy and guides action on basis of importance Answers lie solely in technology Answers involve people, politics, partners SOURCE: Hueston (2006).
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary status in the United States, which reinforces the tendency of public health to focus on the urgent (i.e., the disease or agent du jour) rather than the important (i.e., emergency preparedness); this situation is exacerbated by a budget process that takes money from “important” programs to fund “urgent” ones. Parochialism influences our sense of urgency, he observed, causing us “to focus on those things about which we are most interested in the United States as opposed to looking at the true [global] public health priorities.” Hueston added that assigning blame for public health threats—and especially the tendency to “shoot the messengers” who identify them—suppresses essential collaboration in surveillance. For example, before the United States adopted a policy of “zero tolerance” for food contamination, companies monitored for more pathogens and kept records of their findings, a practice that supported scientific evaluation of the impact of new intervention strategies. Now, he said, “if they monitor and get positive reports, they are culpable and have self-incriminated, so they stopped monitoring.” Coordinating the spectrum of public health activities associated with disease surveillance and detection is an inherently political task, and therefore strongly influenced by societal and organizational culture, Hueston asserted. “To be effective in politics over the long term and to build coordination and collaboration requires people skills,” he observed, and yet increasingly in educational fields relevant to public health, considerations of interpersonal and executive skills are largely ignored under the misguided assumption that science and technology can replace them. Rather, as Korch noted in the ensuing discussion, in a risk management model of public health, understanding and responding to specific social contexts is crucial to effective risk reduction and communication. There is no “magic bullet to change paradigms,” Hueston stated, stressing that steady progress can be made through small successes. This progress, albeit slow, needs to be properly recognized and celebrated. Because the most effective engine for change is educating the next generation of leaders early in their careers, he urged educators to encourage greater global and transdisciplinary awareness in future public health professionals. Optimal Surveillance for Risk Management Clearing the way for true coordination and collaboration would enable optimal surveillance, as Hueston defined it: an integrated and dynamic system with ongoing data collection and real-time analysis to inform risk management, and thereby drive policy and action, with a feedback process to facilitate continuous evolution and adaptation. Information would be drawn from a broad range of disciplines relevant to physical and mental health, as well as domestic and wild animal health and plant health, through the complementary processes of agent surveillance and host and environmental monitoring. In the discussion that followed his presentation, Hueston noted the potential economic benefits of surveillance systems for both developing and industrial-
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary ized countries, but also warned that too much openness could undermine such systems. “If our goal is to promote public health, and surveillance precipitates action to control the disease, do we always have to make the information public?” he wondered aloud. Forum member Johnston responded emphatically that such secrecy “has only gotten us in trouble, that it is elitist and that it is only going to come back and bite us in the long run. If we want to foster a further schism between the public and the scientific community, the best thing we can do for that is to withhold information.” Hueston responded that he agreed with Johnston’s position in principle, but insisted that under some circumstances, the unintended consequences of publicizing information outweighs the potential benefits, such as sharing of animal disease surveillance data in wildlife that precipitates unwarranted trade restrictions on commercially produced products. He concluded that the release of surveillance information should be evaluated on a case-by-case basis. Forum member Margaret Hamburg noted that timing is crucial to such communication and observed that public health officials “get into trouble if we provide information before we fully understand it and before we understand how we are going to respond.” Because the definition of risk is individual and fueled by emotion, public health professionals must address the perception of risk, Hueston explained. Trust is not built merely by sharing data, but by helping people understand information by providing it in context, he said. But, he continued, this is only the first stage. The public must then be actively engaged to discuss their perception of risk and identify priorities for action. Needs and Opportunities This section recounts needs and opportunities for both research and policy derived from workshop discussions on infectious disease surveillance, detection, and diagnosis. Participants, including members of a concluding discussion panel (see Chapter 4 overview), identified a series of issues critical to the development and implementation of effective methods and strategies for the detection of infectious disease and described key challenges in responding to increasingly early disease alerts. Critical Issues in Infectious Disease Surveillance and Detection The following areas were the subject of extended discussion with reference to both surveillance and detection. System Design and Development Hueston captured a recurring theme in this workshop’s discussion when he quoted management guru Stephen Covey’s advice to “begin with the end in
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary mind” (Covey, 1989). As previously noted, many decried the evolution of surveillance and detection systems based on available technologies and databases, rather than in response to well-defined public health needs. Participants suggested the following actions to improve the design and development of surveillance and detection systems: Develop a common design lexicon to improve communication and collaboration between public health practitioners and information technologists. Devise methods to analyze surveillance data through time in order to understand factors and mechanisms that underlie apparent trends. Create syndromic surveillance systems that can adapt to signals as they are received so that an increase in symptom prevalence prompts intensified testing. Broaden the purview of surveillance to encompass social circumstances that affect public health. Incorporate mechanisms to filter surveillance data to reduce false-positive (and panic-inducing) alarms. Recognize and incorporate promising surveillance concepts from noninfectious disease applications. Support basic research in disease surveillance, especially among plant and animal populations. Develop incentives to promote the development of infectious disease diagnostics and to integrate academic and commercial efforts toward this goal. Consider models of infectious disease beyond the replication of viruses or bacteria within organ systems. These would include toxin-producing microbes (e.g., Clostridium botulinum) and pathogens that affect the immune system or immune responses (including delayed or chronic effects, such as those associated with hepatitis C and human immunodeficiency virus [HIV]). Do not overlook longstanding and effective elements of disease detection: pathology, microbiology, and of course, the astute clinician. System Evaluation Workshop participants encouraged critical analysis, comparison, and evaluation of the performance of existing surveillance and detection systems, and in particular, of the U.S. BioSense (syndromic surveillance) and BioWatch (specific threat detection) programs. Their suggestions include the following: Identify the essential components of a global infectious disease surveillance system in order to prioritize funding. Support operational research to evaluate and optimize informatic systems for processing epidemiological data, particularly when used in syndromic surveillance.
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary Develop methods to analyze and compare cost-effectiveness of surveillance and detection systems. Design mechanisms for continuous feedback and improvement into surveillance and detection systems. Reconsider the role of syndromic surveillance in disease control, given the lack of evidence for its effectiveness in early detection of biological attacks and its promise for tracking large-scale, natural disease outbreaks such as H5N1 avian influenza. Integration of Information Workshop participants also stressed the importance of integrating information on infectious diseases from diverse sources and methods to obtain a comprehensive view of disease risk and severity. In particular, they encouraged the development of mechanisms to connect local sources of surveillance data (including information on animal infections, insect vector distributions, climate, and vegetation) with global surveillance networks. Information Transparency, Control, and Access As noted in the previous section, workshop participants expressed divergent opinions concerning the risks and benefits associated with the public disclosure of surveillance findings. Most participants acknowledged a need to balance transparency—a foundation of both public and international trust—against the potential consequences associated with public misinterpretation and overreaction. Several participants urged consideration of political and economic factors, as well as timing (i.e., releasing surveillance information by public health authorities only after it is fully understood and a response is planned or underway), in making such decisions. Reporting Recognizing that the reporting of unusual findings by health practitioners (and subsequently by governments) is essential to infectious disease surveillance and detection, workshop participants considered a range of incentives to promote the affirmative reporting of human, animal, and plant health status at all levels, including the following: Develop and broadly implement standards for infectious disease reporting and sample submission to public health laboratories. Pay clinicians, especially those in developing countries, to report findings to national public health authorities.
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Global Infectious Disease Surveillance and Detection: Assessing the Challenges—Finding Solutions: Workshop Summary Ensure the confidentiality of health practitioners who report infectious disease, while recognizing their contribution to public health. In the case of agricultural diseases, provide financial support for farmers who report disease and guard intellectual property rights of seed companies who assist in identifying vulnerable germplasm. Participants also suggested a variety of mechanisms and tools to improve the collection and use of reported information, as follows: Fund the procurement, storage, submission, and diagnostic testing of clinical and animal specimens from a broad spectrum of private and public sources. Encourage data collection to support the characterization of natural variation and define baseline health status; reward the reporting of negative data. WHO’s Health Metrics Network, a global partnership to build capacity and expertise to provide better health information to decision makers at all levels, represents a potential source of baseline data.17 Support the development of global surveillance and laboratory capacity as mandated by recent revisions to the IHRs. Some suggested that this could be accomplished through increased funding to WHO; others argued that WHO must first be reformed and strengthened; others questioned whether a new intergovernmental entity would need to be invented to achieve the goals set by the IHRs. Support parallel efforts by OIE, NATO, USDA, and the European Union to develop global surveillance capacity for animal and plant diseases. From Alarm to Action In the spirit of beginning with the end in mind, workshop participants also considered the fate of information derived from infectious disease surveillance and detection systems. Several participants observed that U.S. government investment in the detection of biological threats far outstrips its ability to respond to such crises. Some decried the shortsightedness of creating global surveillance networks for infectious disease without also providing for disease control and containment, as well as for public preparedness and risk communication. As Kelley acknowledged, far more than science will be required to help affected communities accept the uncertainty that characterizes the course of an infectious disease emergency and the ensuing public health response. 17 See http://www.who.int/healthmetrics/about/whatishmn/en/print.html.
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