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4 Communication' Coordination, and Education and Outreach OVERVIEW Agencies charged with the responsibility for conducting infectious disease surveillance and response activities need to have well-established communica- tions systems that can facilitate the timely collection of surveillance data and pro- vide national alerts of disease outbreaks to the appropriate personnel. These communications systems are challenged by the need to share information across state lines and jurisdictions, with federal agencies, and with a variety of local and intrastate groups, including health departments, other state agencies, laboratories, emergency departments, hospitals, physicians, the public, and the media. COMMUNICATION AND COORDINATION AT THE NATIONAL LEVEL: THE PULSENET MODEL Bala Swaminathan, Ph.D. Chief; Foodborne and Diarrheal Diseases Laboratory Section, National Center for Infectious Diseases, Centers for Disease Control and Prevention Molecular subtyping of pathogenic organisms is an integral part of epide- miological investigations and surveillance. It is used for microbiological con- fi~ation of outbreaks identified by epidemiological investigations, and in case-control studies. Molecular typing helps to define the population that is involved in an outbreak. In the area of foodborne diseases, molecular subtyping 57
58 PUBLIC HEALTH SYSTEMS AND EMERGING INFECTIONS has enabled the linkage of cases with no apparent connection to a single source outbreak. PulseNet is a national molecular subtyping network for foodborne disease surveillance (http://www.cdc.gov/ncidod/dbmd/pulsenet/pulsenet.htm) that is used as a model for communication and coordination. It is a collaborative, coop- erative program among the Centers for Disease Control and Prevention (CDC), the U.S. Food and Drug Administration (FDA), the U.S. Department of Agri- culture's (USDA's) Food Safety and Inspection Service (FSIS), state and local health departments, and the Association of Public Health Laboratories. It is a network of public health laboratories and food regulatory agency laboratories. The laboratories that participate in the network perform molecular subtyping of bacteria that cause foodborne and diarrhea! diseases, and also perform tubercu- losis subtyping work using the PulseNet standardized protocol and reference standards. The DNA patterns are analyzed by using standard software programs. Collaborating laboratories then electronically communicate the results to CDC. Although the project was initiated in 1996 with subtyping for Escherichia cold 0157:H7, it has since been extended to nontyphoidal Salmonella, Shigella sonrzei, and Listeria monocytogenes. Eventually, PulseNet will cover all food- borne pathogenic bacteria. PulseNet uses pulsed-field gel electrophoresis (PFGE) for molecular sub- typing of foodborne pathogens. The rationale for the program is that state health department laboratories have limited resources and it is unrealistic to expect that they would use different typing methods for each type of organism. PulseNet offers the opportunity of coordination for standardized typing of a number of pathogens. The national database of DNA patterns is set up at CDC, which has the responsibility for maintaining and coordinating the database. At present, there are 38 PulseNet laboratories: 32 state health department laboratories, the Los Angeles County public health laboratory, the New York City public health laboratory, 2 FDA laboratories, 1 USDA laboratory, and a CDC laboratory. Four state health department laboratories serve as area (re- gional) laboratories: those in Minnesota, Washington, Texas, and Massachusetts. Area laboratories provide PFGE typing assistance to neighboring states that do not yet have the capability to type the organisms involved in outbreaks. Also, area laboratories provide technical assistance and training to neighboring states as needed, and surged capacity when required. Funding comes from the National Food Safety Initiative, CDC's Emerging Infections Program (the FoodNet sites are also PulseNet sites), and state health departments. PulseNet plays a key role in outbreak investigations. For example, in June 1997, the Colorado State Health Laboratory had just started routine subtyping of E. cold 0157:H7, and within 2 weeks of instituting this procedure it showed that the isolates from several samples had the same DNA patterns. This discovery resulted in one of the largest recalls of ground beef in U.S. history. An ensuing epidemiological investigation found common source links and also linked a spe-
COMMUNICA TION, COORDINA TION, AND ED UCA TION AND O UTREA CH 5 9 cific case in Pueblo, Colorado, to frozen hamburger patties that originated from the Hudson Company. USDA's FSIS isolated E. cold 0157:H7 from the preformed beef patties obtained from the patient's freezer and performed the subtyping of the meat iso- late. The clinical isolates were subtyped at the Colorado State Health Labora- tory. Both sets of DNA patterns were electronically transmitted to CDC, where the isolates were immediately confirmed as being identical. The DNA pattern was posted on the PulseNet server, and within 48 hours, information was re- ceived on more than 300 isolates, with no matches found, indicating that the outbreak was not occurring nationwide. PulseNet laboratories can communicate with the CDC database via direct access to the CDC server by Internet or high- speed modem and through file transfer protocols and e-mail. The CDC server is also being set up to automatically generate e-mail warnings if two or more labo- ratories submit the same pattern within a preselected window of time. This is to enable the rapid detection of multistate outbreaks. The patterns for specific iso- lates that FSIS or FDA has obtained from contaminated food can also be posted on the Internet. An Internet listserver group provides for two-way communication between PulseNet laboratories and allows participants to exchange information on any aspect of molecular subtyping. In addition, when a laboratory has specific ques- tions or problems about a technique, they are using the listserver to communi- cate with CDC and others. The listserver is also available to participants so they can post patterns and query others if they have encountered those patterns. PulseNet has training and quality control and assurance programs that are coordinated by CDC. When a laboratory joins PulseNet, it must send a laborato- rian to attend a 5-day workshop at CDC to learn the standard protocols. A yearly update meeting is convened for PulseNet laboratory personnel and a biannual meeting of epidemiologists and laboratory personnel is held to discuss the ap- propriate use of molecular subtyping in epidemiology. CDC organizes work- shops, establishes and maintains DNA pattern databases, tracks subtyping ac- tivities at PulseNet laboratories through weekly e-mail feedback, coordinates subtyping work at area laboratories, and coordinates subtyping work for multi- state outbreaks. Despite its successes, PulseNet is insufficiently funded and stretched in its ability to subtype every isolate and follow up with appropriate epidemiological investigations due to a lack of trained professionals. PulseNet provides an expanded capacity for real-time interstate sharing of information on the PFGE of selected bacterial species associated with foodborne diseases. This on-line network and library offers an opportunity for the timely sharing of information that can facilitate the recognition of an outbreak in a way that a national electronic reporting system cannot.
60 PUBLIC HEALTH SYSTEMS AND EMERGING INFECTIONS COMMUNICATION AND COORDINATION AT THE STATE LEVEL James Hadler, M.D. State Epidemiologist, Division of Infectious Diseases, Department of Public Health, State of Connecticut At the state level, communication and coordination in response to emerging infections should be examined from several perspectives. It is necessary to have an understanding of the state public health role in responding to emerging infec- tions and an understanding of associated communication and coordination needs at the state level. It is also important to review how those needs are currently being managed. Finally, it is critical to review the issues that need to be ad- dressed to improve the capacity to respond to emerging infections. States have the primary statutory authority to conduct surveillance in order to control infectious diseases and detect outbreaks. Each state has its own stat- utes that empower the commissioner of public health to collect information re- lated to infectious diseases and outbreaks and to communicate that information.. Thus, states have the authority to require certain information to be reported, and physicians and laboratories must cooperate with state agencies and provide the required information. By contrast, CDC does not have direct authority over states to collect information, and it can expect only voluntary cooperation. Cor- respondingly, most national surveillance data on infectious diseases are provided by states, including any disease suspected of being an emerging infection. Fur- thermore, CDC cannot assist states in the investigation and control of outbreaks unless it is invited to do so by the state. As a result, national population-based surveillance and response are heavily dependent upon each state's capacities for surveillance and response and the associated communications capacity. States are major communications hubs in the response to any acute emerging infec- tions. The state of Connecticut has one of the original four population-based emerging infection sites funded by CDC. States need several communications capacities to carry out their responsi- bilities regarding surveillance for and response to emerging infections. To ef- fectively perform surveillance and communicate the results, timely communica- tion systems are needed. For example, states need to be able to detect cases of Escherichia cold 0157:H7 infection in a timely fashion in order to identify out- breaks that require a response. Communication systems are therefore necessary to provide timely laboratory reports for outbreak detection or case response, or both, for example, 24-hour reporting from physicians in hospitals. States must also have the capability to transmit information rapidly. For example, when the threat of rabies transmission by raccoons first arrived in the region, the state health department in Connecticut had to inform the medical and animal contra! communities on how to best respond. Every state must also be prepared to con- tact physicians in the event of imported cases of plague or Ebola virus infec- .
COMMUNICATION, COORDINATION, AND EDUCATION AND OUTREACH 61 lions. Moreover, states need to be able to share routine surveillance data, for example, on the prevalence of antibiotic resistance. Whenever an outbreak goes beyond state lines, such as an outbreak of E. cold from a widely distributed food product, there is a need for systematic com- munication with other states and with CDC. Communication with hospitals, emergency departments, physicians, and the media must also be rapid. A coor- dinated investigation and response increases the ability to determine the cause of an outbreak, avoids duplicative efforts, and allows for a uniform public health response between jurisdictions. Too often, however, communications systems at the state and local levels are outdated, ad hoc, situational, or underfunded. There has been little assess- ment of their sufficiency, and there are no standards or guidance for what con- stitutes uniform criteria. In addition, many states are hampered by a diminished capacity to obtain the latest information technology and are discouraged from developing it because of downsizing. Concerns with emerging infections, pandemic influenza, and the ability to respond to bioterrorism, however, are causing many state health offices to ex- amine their communications capacities. Although the standard for laboratory reporting, for example, is still surface mail, there has been strong interest in ap- plying computer and electronic communications technologies to laboratory re- porting in states, and communications standards and systems are being devel- oped and pilot tested in a few states. However, it is likely that even when standardized communications systems are developed there will be problems in their acquisition and maintenance because of the limited availability of well- trained information technology personnel. Ironically, all states have been reporting their data electronically to CDC on a weekly basis for the past 10 years. However, because the communications compo- nent of intrastate surveillance systems has not improved, the timeliness of the data reported to CDC has not improved. Thus, the national reporting system has not been very effective for the timely recognition of interstate disease outbreaks. The intrastate standard for communicating all but the most urgent messages to hospitals, providers, local health departments, and others that need to know is hard-copy mail and oral presentations. Increasingly, at the national and interstate levels, teleconferences and telephone conference calls are used to make available high-quality information on specific topics. In addition, the World Wide Web and Internet listserver groups are making timely data more readily available. Interstate communication during outbreak detection, investigation, and control has been successful, relying on e-mail, faxes, and telephone conference calls. In addition, the CDC-based public health e-mail system, Wonder, has greatly facilitated interstate and federal-to-state communications at a time when many state governments were reluctant to spend money on e-mail and Internet access. Telephone conference calls and the expanded CDC capacity to orches- trate them have also been an invaluable part of the national public health re-
62 PUBLIC HEALTH SYSTEMS AND EMERGING INFECTIONS spouse capacity. For example, to coordinate and standardize state-based re- sponses to multistate outbreaks, a group of state epidemiologists not involved in the outbreak investigation can now be readily convened to help determine the appropriate response to breaking and sometimes preliminary information from the investigations. An uninvolved group is in a better position to make decisions that are not necessarily affected by the stressful circumstances of the situation. State agencies with Internet access are also learning how to better use the Internet, particularly as it is becoming an increasingly essential tool for commu- nication. For example, during the 1997 Hong Kong avian influenza outbreak, government communications from Hong Kong were necessarily cautious and frequently missing essential information. Connecticut epidemiologists moni- tored the situation by reading the Hong Kong newspapers on the Internet and then forwarding excerpts by e-mail to neighboring state epidemiologists to help them anticipate the potential for international spread. Similarly, Rhode Island recently used its website to keep neighboring states updated regarding an acute situation involving meningococcal disease and mass vaccination. The capacity for intrastate communication lags behind that for interstate communication. The telephone, press releases, and first class mail are still the standards for rapid communication for most states. Some states use mass fax capabilities by which they can simultaneously send one fax to a long mailing list. The Internet is still limited as a communications tool within states because many of the people who need to be reached do not have access to it. Except for universities, for example, most emergency departments, hospitals, laboratories, and physicians do not have the kind of centralized e-mail that is made possible by the CDC Wonder system. To improve the intrastate communications capacity so that it does not handi- cap the rapidly developing national ability to conduct timely surveillance for and response to emerging infections, an effort is needed to formally define what mini- mum intrastate communications capacities and technologies are needed. It may be impossible to improve the rate of reporting, for example, without electronic re- porting mechanisms and capacity. In the process of doing this, it will be possible to determine what additional resource might then be needed. NONGOVERNMENTAL ORGANIZATIONS AND STATE PARTNERSHIPS Kathleen Young Executive Director, Alliance for the Prudent.Use of Antibiotics Nongovernmental organizations and partnerships play an important role in enhancing the capacity for improving the public health response to emerging infections. The Alliance for the Prudent Use of Antibiotics (APUA) (www.antibiotic.org) is the only independent organization dedicated exclusively
COMMUNICATION, COORDINATION, AND EDUCATION AND OUTREACH 63 to curbing antibiotic resistance. APUA works in partnership with key govern- ment organizations with similar goals. Founded in 1981 out of concern for emerging antibiotic resistance, it now has 24 affiliated chapters across 90 coun- tries. Funding comes from membership fees, private donations, government contracts, and corporate support. APUA uses research, education of practitio- ners, patients, and the public, surveillance, advocacy, and grassroots action to achieve its goals. Complex and urgent public health problems such as antibiotic resistance demand cooperative efforts between government and nonprofit or- ganizations to maximize the use of resources in a timely fashion. APUA develops its messages and programs on the basis of a number of fun- damental facts: (1) antibiotic resistance is a naturally occurring phenomenon; however, human behavior can amplify or curb antibiotic resistance or the emer- gence and spread of resistance; (2) antibiotics are precious and exhaustible medi- cal resources; (3) the growth rates of antibiotic resistance are higher than expected and quite alarming; (4) resistant infections are more costly to treat; (5) 50 percent of antibiotics are used in animals and agriculture; and (6) for some conditions, 50 percent of the antibiotics used in medicine are of no benefit to the patient. APUA's global network involves a local team approach to curbing resis- tance. It involves microbiologists, laboratory personnel, infectious disease phy- sicians, pharmacists, patients, and general practitioners and specialists working together in each of its chapters. APUA conducts its educational program through a website with information about antibiotic resistance (www.antibiotic.org), interviews with the media, development of patient brochures, and a lecture se- ries that reaches approximately 7,000 physicians, residents, and nurse practitio- ners per year. In addition, APUA conducts advocacy activities including pro- viding expert testimony at government hearings, preparing reports, and conducting interviews with the press. APUA works with key government organizations involved in parallel ef- forts including the Centers for Disease Control and Prevention, the U.S. Agency for International Development Infections Disease Initiative, and the World Health Organization Office on Antimicrobial Resistance Monitoring. The shared objectives of these groups are to improve susceptibility tests, encourage their use, assist in national policy development, promote national surveillance, gather data on the emergence and spread of resistance, and provide information on an- timicrobial resistance to governments and industry. APUA's current work plan includes the following: . a collaborative project with the University of Illinois, and sponsored by the National Institute of Allergy and Infectious Diseases of the National Insti- tutes of Health, to develop a scientific collaboration and a website which will track resistance in commensal organisms (see www.ROAR.APUA.org).
64 PUBLIC HEALTH SYSTEMS AND EMERGING INFECTIONS . development of an integrated database of the major global surveillance systems tracking antibiotic resistance; this combined data set is intended to be used by academics to answer specific public health questions; . a partnership with the Massachusetts Department of Public Health to test a model surveillance system that correlates antibiotic use and antibiotic resis- tance; . working with the Massachusetts Society of Infectious Disease Physicians to survey all primary health care physicians concerning their prescription prac- tices and to distribute educational information about antibiotics; . a partnership with the Massachusetts Group Insurance Commission and Massachusetts Medicaid to explore antibiotic use in their patient populations; . distribution of a scientific newsletter exploring the scientific and medical aspects of antibiotic resistance; . a major national education campaign to develop and disseminate factual information concerning antibiotic use as growth promoters; . development of small grants and training workshops to build the research capacity of APUA's 24 foreign affiliated chapters; and . continuation of its lecture series for U.S. providers. APUA is an example of a small nonprofit organization whose resources can be used to complement government programs and improve the quality and pace of the public health response to emerging infections. CONTINUING EDUCATION: THE ROLE OF PROFESSIONAL ORGANIZATIONS Scott Becker Executive Director, Association of Public Health Laboratories Historically, training and continuing education have been the first items cut from governmental budgets during periods of fiscal austerity. This trend is par- ticularly troublesome in an era when the prevalence of infectious diseases is resurging and health professional education is central to their control. Associations play a major role in education; 95 percent offer educational programs to members, and 79 percent report that they offer public information and education. In addition, associations spend $2.2 billion annually on technol- ogy. Continuing education includes workshops (in the research and clinical communities these might occur in the laboratory), conferences, symposia, dis- tance learning, audio and video teleconferencing, and moderated Internet list- server groups. Groups that have been actively involved in communication and education activities related to emerging infectious diseases include the Associa- tion of State and Territorial Health Officials (ASTHO), the National Association of County and City Health Officials (NACCHO), the National Governors' As-
COMMUNICA TION, COORDINA TION, AND EDUCE TION AND OUTREA CH 65 sociation, the National Conference of State Legislators, the Council of State and Territorial Epidemiologists, and the Association of Public Health Laboratories. The Association of Public Health Laboratories (www.aphl.org) has a train- ing and education committee that provides oversight to the National Laboratory Network (NLTN) and is a collaborator in the Public Health Training Network (PHTN). PHTN is a model program centered at CDC and consists of a network of public, private, academic, and business organizations, including the Health Care Financing Administration, Health Resources Services Administration, FDA, Association of State and Territorial Health Officials (ASTHO), National Association of County and City Health Officials (NACCHO), nonprofit organi- zations, and local and state health agencies. Since 1993 PHTN has trained over 500,000 individuals. PHTN conducts training needs assessments, enlists experts in particular subjects, and announces its programs widely. Distance learning coordinators at the city and state levels help communicate the material and coordinate activities. Supportive material is provided to the learner at the work site. PHTN courses include instruction on infections caused by resistant gram-positive organisms, antimicrobial use and resistance, good laboratory practices, and laboratory risk assessment. The National Laboratory Training Network is jointly sponsored and admin- istered by the Association of Public Health Laboratories and CDC. NLTN fo- cuses on delivering training to the public health laboratory workforce. The pro- gram was initiated in 1989 in response to training needs associated with human immunodeficiency virus (HIV) and AIDS. The program has seven regional of- f~ces, all housed in state public health laboratories. The offices provide work- shops and seminars and weeklong public health series courses and has a lending library. Each office has a satellite downlink so that every PHTN course is copied and available. Impact assessments are routinely conducted. In 1997 and 1998, 268 courses were offered nationwide (2,000 students), and 126 of these were infectious disease-related. Sample courses are on mo- lecular diagnosis of infectious diseases, viral load workshops for HIV and hepa- titus C virus, and "Mad Cows and Englishmen." PHTN also has a public health series on foodborne illness and a series on virology and the influenza pandemic. ROLE OF MEDICAL INFORMATION IN DETECTION AND MANAGEMENT OF EMERGING INFECTIONS Edward ("Ted") Shortliffe Associate Dean, Information Resources and Technology, Stanford University The role of informatics in clinical medicine and public health is an expansive and complex topic. In that sense, emerging infections and their
66 Enterprise NetworK - Billing and Financial Systems ~~ / / / '/ ~ / Clinical Workstations Clerical Workstations / 1 PUBLIC HEALTH SYSTEMS AND EMERGING INFECTIONS Personnel Systems Clinical Database, Electronic Medica Record / | Pharmacy I Cost Accounting / | Microbiology I I Research | / | Library | Databases | / | Resources | Administrative I Systems (e.g., ADT) Data Warehouse I | Radiology / / Educational I , Programs Clinical / | Materials | Laboratory / I Management I FIGURE 4-1. The Enterprise Intranet: An electronic medical record system linking clinical databases and primary and ancillary health care depall~ents, as well as providing certain basic administrative and clerical Unctions. SOURCE: Edward "Ted" Shortliffe. detection and management are not necessarily unique. Many of the issues re- garding the management of emerging infections can be couched in the context of how best to deliver advice at the point of care and to develop protocols and guidelines. They are also part of a larger discussion on enterprise-wide net- working and connecting laboratory and medical record systems that is occurring. One of the most important potential applications of the Internet is the pool- ing and sharing of data, yet this cannot be done until there are more clearly de- fined standards and coordination at the regional and national levels. Clinical data must be in a form in which they can be shared across institutions. In the health care setting, clinical workstations provide access to the phar- macy, microbiology laboratory, radiology department, the clinical laboratory, and certain basic administrative functions. Many institutions are trying to bring these components together in the form of a clinical database, which can evolve into a full electronic medical record. This type of architecture is commonly called the "enterprise intranet" (see Figure 4-14. When clinicians use the medical record system to record data about clinical observations, the data are stored in the clinical data repository, as are all the test data that are coming from various sources, such as radiology, the clinical labo- ratory, and the microbiology laboratory. These data then also become useful for quality assurance, utilization review, clinical trials, or public health surveys and monitoring. Thus, to meet the goals of better data management and creation of
COMMUNICATION, COORDINATION, AND EDUCATION AND OUTREACH 67 an infrastructure that will support emerging infection detection and manage- ment, it is important to examine how clinical data are being captured and man- aged within individual organizations. The privacy and confidentiality of patient data might actually be better protected with the electronic record than with the paper-based record because access can be controlled more effectively. Encryp- tion and proper authentication technologies have advanced to the stage to ensure robust data protection if the methods are properly implemented and combined with unambiguous privacy policies and enforcement. A significant challenge to electronic medical records comes from the meth- ods by which information is recorded into the system by the physician. Struc- tured data entry (rather than free-text dictation or transcription) becomes an im- portant component in the creation of such a clinical database. This may be achieved with handheld clipboard-size machines with pen-based interfaces that have wireless connections into local networks. Data entry is through forced categories, so the captured information becomes uniform, unambiguous, and suitable for proofreading or comparison. Most importantly, these systems must be integrated with other information resource systems in the health care setting, such as clinical care and specialty service sites, and administrative and financial offices. To achieve all of this, education is paramount, as are standards devel- opment, adoption of computer-based patient records, and routine implementa- tion of high-speed access to the Internet.
