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6 Connecting the Pieces: Communication Communication is a critical element in the successful operation of sys- tems of emergency medical care. The many separate parts of these sys- tems individual health care providers, emergency medical services (EMS) agencies, emergency departments (EDs), critical care units, and various oth- ers must each perform their roles well, and they must also be able to work together. Communication, through formal and informal channels and through high-technology equipment and simple face-to-face conversations, is the thread that ties the separate pieces into a system. This chapter views communication from several perspectives. First, the context in which communication takes place creates special (perhaps even unique) communication needs. Delivery of services to specific patients raises different issues than do planning and information exchange that are independent of patient care. Second, the mechanisms by which communi- cation is achieved raise special questions. Some forms of communication- enhanced 9-1-1 emergency access systems and statewide microwave radio networks are cases in point- depend on the application of particular tech- nologies or equipment. Often, however, ordinary telephone calls can meet important communication needs. The third important factor is the partici- pants in the communication process. Patients and their families (or other bystanders), providers, and administrators need to interact in various com- binations and for various purposes. Fourth, better communication among all the providers who care for a patient is a special concern. "Follow-up" on patient outcomes and further care and "feedback" from other providers characterize two important forms of that communication. Through follow 187

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188 EMERGENCY MEDICAL SERVICES FOR CHILDREN up efforts, providers actively seek information on the condition of patients whom they have treated and on whether recommended care has been re- ceived. Feedback gives providers valuable information on the consequences of their care. This chapter reviews the communication links that the committee views as most important {c': emergency medical services for children (EMS~C) and discusses ways in which those links should be strengthened. Several issues addressed in the previous two chapters (e.g., education In how to use the EMS system; the special training and guidance that dispatchers should have; on-line medical control; the interhospital links needed for regionalization of services) receive further attention here. Although the issues raised in this chapter are framed in terms of emergency care for children, they are not unique to children. The committee's observations point to ways to help make good emergency care available for all patients. PUBLIC ACCESS TO THE EMERGENCY CARE SYSTEM To benefit from the services of an EMS system, children who are ill or injured must first of all gain access to it. Many children initially receive such care at a hospital emergency room, where their parents have taken them without any prior contact with the EMS system. For children who need urgent care but not any of the services available in the prehospital setting, this can, in fact, be an appropriate way to reach emergency services. For many other children-those with major trauma or serious respira- tory distress, for example prehospital care from trained providers may be essential for a good outcome. The telephone (or equivalent media such as Citizen's Band radio) is the usual means of contacting the EMS system to obtain such assistance. Adoption of a universal emergency access num- ber namely, 9-1-1-is widely supported, to make it as easy as possible to request EMS assistance. ~ Sometimes it may not be clear whether emergency care is needed; in these situations, advice provided by telephone may help clarify what steps to take. Poison control centers are well-recognized sources of specialized information regarding situations that may range from harmless to life-threat- ening. Parents also seek advice from staff at EDs or from primary care providers on the care their children need. Although many in the medical community find this telephone advice valuable, sometimes in averting un- necessary ED visits, others are concerned that this indirect assessment of a child's condition may miss serious disorders. The discussion that follows reviews basic and augmented features of 9-1-1 telephone systems and the added features of enhanced 9-1-1 and pre- sents the committee's recommendation supporting universal adoption of the system. Following the examination of points relating to 9-1-1, this section

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CONNECTING THE PIECES 189 presents a brief overview of the operation of poison control centers and discusses some issues related to other forms of telephone advice. Universal Access Through 9-1-1 For a quartex-century' nationwide adoption of a universal emergency access number such as 9-~-l has been recommended or endorsed by many groups (e.g., NASINRC, 1970a, 1972, 1978a,b; Brinegar, 1973; Whitehead, 1973; ACEP, 1976; AHA-ACEP-AMA, 1988; National Committee for In- jury Prevention and Control, 1989; NHTSA, 1990b; Seidel and Henderson, 1991~. Throughout much of the country today, a telephone call to 9-1-1 provides access to police, fire, and EMS services. Table 6-1 presents recent estimates of the proportion of each state's population covered by 9-1-1. Communities began working with their local telephone companies as long ago as 1968 to implement 9-1-1 service (Whitehead, 1973~.2 Accord- ing to the Advisory Commission on State Emergency Communications (un- published tables, August 1989), about 20 years later more than 40 states had legislation either authorizing or mandating adoption of 9-1-1. Various ap- proaches are used to fund these systems, including state or local telephone subscriber fees (especially the latter) and state or local taxes. Implementa- tion generally must be managed by individual counties or other local gov- ernmental units that can coordinate the interests and resources of the public, the public safety agencies, and the telephone company for financing and operating the system. Substantial progress has thus been made toward the goal of universal access enough that a National Emergency Number Association (NENA) was founded in 1982 to further the mission of "One Nation, One Number." As of mid-1992, NENA had nearly 2,000 members across all regions of the country; the association issues a quarterly magazine (NENA News, now in its tenth year of publication), offers an 800 number for updates and infor- mation on legislation and issues affecting the 9-1-1 field, and holds an annual conference. The Associated Public-Safety Communications Officers (APCO) organization also gives considerable attention to 9-1-1 issues (partly in collaboration with NENA); for instance, its journal (APCO Bulletin) pub- lishes an annual issue on 9-1-1 topics. Typically, more than 80 percent of the calls handled by 9-1-1 systems are for police services and about 10 percent are for EMS. For instance, NENA cites information from Orange County, Florida (population over 430,000), suggesting that of nearly 294,000 sheriff, fire, and rescue calls, 87 percent were to the sheriff and 11 percent were "medical patches"; for the city of Kissimmee (population 30,300), 66 percent of about 16,700 calls were for police, 17 percent were for the EMS system (NENA News, 1992~. Never- theless, it is the EMS community that is working through the American

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190 EMERGENCY MEDICAL SERVICES FOR CHILDREN TABLE 6-1 Percentage of Population Covered by a 9-1-1 System, by State StatePercent _ State Percent Alabama60 Montana Alaska90 Nebraska 65 Arizona Nevada 95 Arkansas25-50 New Hampsh~re lob California100 New Jersey 35b Colorado85 New Mexico 75 Connecticut100 New York 80 Delaware100 North Carolina 76 District of Columbia100 North Dakota 33 Florida99 Ohio 60 Georgia76 Oklahoma 80 Hawaii95 Oregon 95 Idaho68 Pennsylvania 60 Illinois64 Rhode Island 100C Indiana49 South Carolina 72 Iowa South Dakota 70 Kansas80 Tennessee 83 Kentucky56 Texas 97 Louisianaa Utah 85 Maine25 Vermont 25 Maryland100 Virginia 75 Massachusetts38b Washington 40 Michigan60 West Virginia 43 Minnesota100 Wisconsin 78 Mississippi60 Wyoming 97 Missouri62 NOTE: , not reported. aExtent of coverage is unknown. bStatewide implementation of enhanced 9-1-1 is under wa C9-1-1 or similar access number. SOURCE: Emergency Medical Services ( 1992). Society for Testing and Materials (ASTM, 1991) to develop national con- sensus guidelines for planning and developing enhanced 9-1-1 systems. The National Highway Traffic Safety Administration (NHTSA, 1990a) also par- ticipates in the ASTM guidelines effort. Benefits of 9-1-1 Standard Capabilities The 9-1-1 systems provide a simple, easy-to- remember telephone number that callers, including young children, can use to make quick contact with emergency services of all kinds. A common

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CONNECTING THE PIECES 191 number across the country eliminates the need to learn separate numbers for specific emergency services or in various communities. With such a sys- tem, callers do not waste valuable time trying to determine what number to use or waiting for a telephone operator reached through "O" to provide appropriate information about the correct agency (and relevant local tele- phone number) to contact. (To illustrate the profusion of numbers that has existed, in the early 1970s, a 21-~unty area in Nebraska had 184 separate ambulance service phone numbers tNAS/NRC, 1978b].) In short, the local benefits of a single, easy-to-dial telephone number for access to emergency services are multiplied in our highly mobile society, because people can rely on being able to use that same number no matter where they are and be confident that it will be answered by an "emergency-oriented" individual. The benefits of 9-1-1 and enhanced 9-1-1 do not accrue solely to the health field. Reduced response times are very important, for instance, in law enforcement and firefighting. A functioning 9-1-1 system can also be important in disaster situations, such as tornados. More generally, the fi- nancial, psychological, and public relations benefits (in terms of public regard for a "public good" agency) of simply having a more efficient, more cost-effective system of emergency services should not be underestimated. New Capabilities Certain new features have been developed to aug- ment standard 9-1-1 capabilities (other than enhanced 9-1-1 described be- low). A TDD keyboard (i.e., Telecommunications Device for the Deaf) has been developed that will meet the requirement of the Americans with Dis- abilities Act (ADA) that telephone emergency services provide direct access for persons with speech or hearing impairments (Lopez and Dion, 1991; Suchat, 1992~; with related advanced computer technologies, TDD calls can be displayed on a computer screen, enabling the call-taker to communicate with the individual calling in. Another advance for 9-1-1 lies in helping those who do not speak En- glish to use the 9-1-1 system successfully. EMS agencies can, by subscrib- ing to a telephone interpreter service available through AT&T ("Language Line Services"), obtain real-time access (all day, every day) to interpreters who can assist operators to communicate with callers in as many as 140 different languages (Moedinger, 19921. This kind of service makes it pos- sible to handle some calls strictly by telephone and to send response units (fire, police, or EMS) appropriate to the situation instead of every type of unit because of lack of understanding of the actual emergency. Enhanced 9-1-1 The original 9-1-1 service provides the benefit of simplified access to emergency services. Newer, enhanced 9-1-1 systems (E9-1-1) offer the ability to draw on computerized databases to identify automatically the

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92 EMERGENCY MEDICAL SERVICES FOR CHILDREN telephone number and location of the caller respectively, Automatic Num- ber Identification (ANI) and Automatic Location Identification (ALI). The automatic availability of that information means that the EMS system can route calls to appropriate jurisdictions, when that is important in the par- ticular area. More significantly, it enables the EMS system to send assis- tance even if callers cannot speak English or communicate effcet~vely be- cause of their c-ond~on or for other reasons. AlI these factors mean that response times can be reduced, with presumably improved levels of inter- vention and, ultimately, of patient outcomes. The TDD and translation services noted above for standard 9-1-1 are also available for enhanced systems. New radio devices now make it possible for children or adults with chronic illnesses or other high-risk conditions to transmit a call to 9-1-1 by pressing the radio transmitter (Keller, 1992~. Some "Lifeline" systems based on radio transmitter systems are more complex. They are often monitored by hospitals, alarm companies, and other third parties, which keep data on subscribers' medical history and conditions and persons to reach in an emergency; when the subscriber triggers the transmitter, monitors call the residence or nearby family or friends before a call is initiated to 9-1-1 or the relevant EMS agency. Although such systems have obvious advantages, they also have some drawbacks. For example, if there is no answer, all resources and equipment may be sent to the home, for what often turns out to be a false alarm. Moreover, use of an intermediary may in fact delay entry into the EMS system. important Considerations for 9-1-1 Systems Despite progress in 9-1-1 technologies and as valuable as 9-1-1 systems are believed to be, some obstacles to complete adoption and implementation of these systems remain. Not all of these relate to EMS per se, and cer- tainly not to EMS-C, but they must be understood if the EMS and EMS-C fields are to be persuasive in arguing for comprehensive adoption of 9-1-1 and successful in helping to devise ways to bring that about. Installation and Operation Implementing an ALI component of an E9-1-1 system can require additional work in local areas, especially rural areas, that do not have "city-style" addresses. Converting to such addresses in various municipalities requires close collaboration with the U.S. Postal Service. The Postal Service has jurisdiction over the city, state, and ZIP code parts of a mailing address; a municipality has responsibility for street names and house numbers. The Postal Service believes that its guidelines on good addresses can be helpful to localities that are moving toward E9-1-1 but currently lack appropriate addresses to use in such a system (Pensabene,

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CONNECTING THE PIECES 193 1991~. The increasing use of mobile cellular phones poses its own techno- logical challenge to the locator aspect of enhanced 9-1-1 since no fixed address is associated with them. The cost of installing and operating a 9-1-1 system, especially E9-1-1, may be an obstacle, especially given the current financial constraints that many states and 1Q081ilieS face- Old telephone switching -equipmer~t may need to be replaced to accommodate 9-~-1; additional andior different per- sonnel may be needed; and stand-alone databases may be required for E9-1-1 capabilities. Further, the costs of an E9-1-1 system will depend heavily on the amount of mapping and numbering that must be done for locations without street addresses. Developing and maintaining the database for tele- phone numbers and addresses will also contribute to installation and opera- tion costs. Patsey et al. (1992) report installation charges in North Carolina ranging from $18,000 to $160,000 for basic and enhanced 9-1-1, respec- tively, and monthly operating charges of $4,000 (basic) and $8,000 (en- hanced). One county in Iowa estimated that implementing an E9-1-1 sys- tem (for about 16,000 persons) would cost about $280,000 initially and require about $30,000 annually to operate (Petricca, 1992~. There are clear justifications for enhanced 9-1-1 in rural areas more rapid call-taking, better response times, better assistance for children who need emergency assistance but cannot describe where they live but the cost and logistical requirements lead some experts to question whether the benefits are suffi- cient to warrant outlays such as those quoted above. Some communities for a variety of reasons continue to rely on seven- digit phone numbers; further, they may have separate numbers for police, fire, and EMS. These arrangements continue, in some cases, because juris- dictional disputes have made it impossible to implement 9-1-1 a political factor that this committee finds unpalatable when public and patient safety is at stake. Communities may be unwilling to work together if doing so requires giving up local control of their public safety agencies. New call- routing technologies, however, now generally make it possible for a 9-1-1 system to direct calls to specific communities based on where the call origi- nates. Communities or public safety agencies themselves may resist giving up the separate phone numbers that provide direct access to each agency; one compromise position is to require such agencies to participate directly in the 9-1-1 system and also operate a separate phone number if they choose to do so, but experts worry that two separate phone numbers might be more confusing than helpful. Call Answering and Dispatch Services Once calls to 9-1-1 are placed, the EMS system needs to be prepared to answer them. Various approaches are used, depending on the particular needs of each system. All 9-1-1 calls are received at a public safety answering point (PSAP). In some systems,

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94 EMERGENCY MEDICAL SERVICES FOR CHILDREN individual communities within a 9-1-1 area will maintain independent PSAPs, with calls routed to the appropriate point based on the caller's location or telephone exchange. The PSAP determines the kind of service needed (e.g., police, fire, medical) and either directs the call to the appropriate agency's dispatch center or performs the dispatch function itself. Because most 9-1-1 calls ~e pol~ce-relamd~ dispatch functions for all emergency services are frequently handled by employees of the police de- partment who may have little or no EMS training. All dispatchers who handle EMS calls should have minimum levels of training and access to medical guidance. (The committee's views on the training and protocols needed by dispatchers are presented in Chapters 4 and 5.) Some commer- cial programs are available, such as "Medical Priority Dispatch," that use set protocols to give police department employees appropriate questions to ask and appropriate responses to caller inquiries or statements. Finding that 80 percent of the paramedic runs dispatched in one year were for "false alarms" (essentially all calls, including bogus ones, in which paramedics did not evaluate or treat a patient at the scene) led Ramenofsky and col- leagues (1983) to conclude that better dispatch criteria were clearly needed. Brodsky's (1992) study on road accident reports points up some of the difficulties in making dispatch decisions. If callers do not provide specific information about the need for an ambulance, police dispatchers must de- cide whether to alert EMS, and those decisions may be delayed or incorrect. For example, although most highway collisions do not require ambulance service, in nearly 20 percent of fatal crashes in Missouri, the delays in notifying EMS were 5 minutes or longer. Brodsky also notes that specific policies on notifying EMS varied across the state; some local EMS systems believe that they, not the police, should detains whether to send an ambu- lance. He concludes that greater efforts should be made to link information on police dispatch with that on collisions to learn more about the impact of specific dispatch policies on morbidity and mortality. The impact of 9-1-1 systems on morbidity and mortality has not been adequately assessed. An analysis of trauma death rates in North Carolina counties before and after implementation of 9-1-1 showed that counties with 9-1-1 had a lower average trauma death rate than counties without 9-1-1, but the presence of 9-1-1 could not account for the difference after control- ling for other factors (Patsey et al., 19921. More significant than the ab- sence of 9-1-1 was the fact that those counties were more rural, less likely to have a trauma center, and less likely to have advanced life support (ALS) services available. These results suggest that a 9-1-1 system cannot by itself ensure better outcomes for trauma; other pieces of the EMS system must be available as well. This study does not, however, provide any insight into benefits that 9-1-1 might bring in other kinds of emergencies, perhaps by facilitating speedier response to cardiac emergencies or by pro- viding access to prearrival instructions for first aid.

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CONNECTING THE PIECES 195 Public Access and Use One very practical concern, in both rural and urban areas, can be availability of telephone service. Some people in rural or remote areas may rely on radio communications, but others may have no local telecommunications resources at all. Factors that account for the lack of telephone services sparse population, terrain, poverty are likely to be of a long-standir~g nature and axe unlikely to succumb to remedial efforts based solely on arguments about 9-~-! service. Even ~n -urban areas, some households have no telephone service. One study found that families of 9 percent of the patients in a public assistance managed care plan who were seen in the pediatric ED of a major city hospital did not have a telephone (Glotzer et al., 1991~. Such families are likely to rely on neighbors' tele- phones or on nearby public telephones. Either way, some of the benefit of rapid access to EMS that 9-1-1 is intended to provide is compromised by delay in reaching a telephone, and the locator benefits of enhanced 9-1-1 are reduced because the caller is not at the scene of the emergency. Installing even the most sophisticated 9-1-1 system will not guarantee that the public will use the EMS system appropriately or that the EMS system will provide an appropriate response. Public education efforts are needed to prepare parents and others responsible for the care of children to recognize emergency conditions and to know how to respond, including how to contact the EMS system. (See Chapter 4 for a more extensive discussion of public education needs in this area.) As is the case with all emergency services, attention also must be given to when 9-1-1 should not be used. Inappropriate calls make it more difficult for those who really need emergency care to reach the EMS system; unnecessary dispatch of equipment risks squandering scarce staff and ambulance resources. Some inappropriate calls may, however, signal a need for other kinds of informa- tion and transportation services to assist people in getting to doctors' of- fices, clinics, and pharmacies for nonurgent medical care. In these situa- tions, having a "municipal services" or other nonemergency number may be useful. Managed Care Guidelines for Using 9-1-1 Efforts to promote use of 9-1-1 have received limited support from many managed care programs or health maintenance organizations (HMOs). Members of such programs may be requested, or required, to telephone the HMO offices first before call- ing 9-1-1 except in obviously life-threatening emergencies. Such policies are intended as an administrative mechanism to reduce unnecessary ED visits, which are a serious burden for some EDs and are costly for insurers. Given the difficulty with which parents or other responsible adults (or ado- lescents, siblings, or younger children) might have in discerning what is a life-threatening emergency in a child and what is not, requirements to con- tact the HMO first can pose problems if the definition of "emergency" is too narrow or too rigidly enforced.

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196 EMERGENCY MEDICAL SERVICES FOR CHILDREN A study in the Chicago metropolitan area found that 15 of 16 large HMOs (accounting for 95 percent of HMO enrollees in the area) advised their members to contact the HMO (or gatekeeper physician) first in the event of an emergency; one advised going to the nearest hospital (some advised this as a secondary response in the most serious emergencies); none advised calling 9-1-1 as the first response (~ossfel`1 Ed Ryan, 1989~3 Similar policies were found among ~ representative sample of federally qualified HMOs (Kerr, 1989~. The vast majority allowed enrollees to pro- ceed to a hospital ED without permission when the problem was life-threat- ening and required permission when it was not; the mechanisms for acquir- ing permission from a gatekeeper by telephone varied across the HMOs. In some cases, patients would be allowed or directed to go only to a hospital in the HMO network (and not necessarily to the nearest one). If a true emer- gency exists, such policies run counter to EMS guidelines. Kerr (1989, p. 2763 notes that some "medical directors believed that telephone triage systems introduce undue delay in ED access and for that reason were not used by their HMOs," and he goes on to comment on the dearth of information about the safety of telephone gatekeeping systems of this sort in the EMS context. Others, however, have reported on advantages of a well-developed HMO telephone triage system (Daley et al., 1988; Leaning et al., 1991~. HMO staff have access to patient records during a call, can advise callers unaware of the seriousness of a condition how and where to seek appropriate emergency care (especially if no 9-1-1 system is avail- able), and can summon emergency transport for patients who might other- wise avoid seeking such assistance. The experience of the Harvard Com- munity Health Plan suggests that the participation of emergency physicians in HMO plans can provide greater appreciation within the organization of the need for efficient access to the EMS system (Daley et al., 1988~. Knopp (1986) argued for HMOs to take four steps to improve access to emergency services: (1) base reimbursement decisions on review of the initial presentation of the patient to an appropriate emergency facility or physician, not on the final diagnosis; (2) develop a cooperative relationship with the local EMS system, including providing enrollees with information on how to use it; (3) instruct HMO physicians and nurses to "err on the side of patient care, not cost containment" in making telephone triage decisions; and (4) develop better triage methods so that potential life-threatening situ- ations can be appropriately identified and the EMS system called into play in a timely fashion. Legal and Ethical Issues Privacy and confidentiality issues may be- come a concern precisely because of the caller identification capabilities that are at the heart of the E9-1-1 system. In principle, it does not seem reasonable to expect callers into an EMS system to object to this feature, as

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CONNECTING THE PIECES 197 it arguably is always in their best interests. In practice, however, fears about invasion of privacy and breaches of confidentiality relating to sensi- tive medical information have reached quite high levels (as briefly explored in Chapter 7~. Such concerns may trouble even those who do not make direct use of the system because of the need to maintain a comprehensive database of telephone numbers and addresses for an entire service area. Another question that arises with E9-l-l is whether there is an obIiga- tion to dispatch response personnel or equipment (police, fire, or EMS) in response to very brief calls in which the location of the call is known but the caller has seemingly deliberately hung up before completing the call. In these situations, when the call-takers may suspect but not be certain that the call is a hoax, a decision must still be made as to whether to respond and, if so, with what kind of service. Frequently, 9-1-1 centers will call the num- ber back and send police to ensure that no emergency exists. Recommendation for 9-1-1 This study committee strongly believes that universal adoption of 9-1-1 must be a national goal. It recognizes that 9-1-1 systems in themselves cannot ensure that efficient and effective emergency services will be avail- able in response to a call; 9-1-1 systems are, instead, one part of the EMS system that needs to be in place to make such care available, and the capa- bilities of E9-1-1 make it especially valuable. Successful adoption of 9-1-1 is not necessarily simple; it will require communities to address a variety of interlocking challenges. In the committee's view, however, 9-1-1 is an essential EMS system element, for all the reasons and benefits offered above. Therefore, the committee recommends that all states ensure that 9-1-1 systems are implemented. The 9-1-1 system must be universally acces- sible and effectively linked to the emergency medical services system. Communities with 9-1-1 systems in place should move toward enhanced 9-1-1 capabilities. Communities with no 9-1-1 system should move di- rectly to an enhanced 9-1-1 system. More specifically, the committee advises that the federal center and state agencies described in Chapter 8 make the 9-1-1 issue one of their key priorities. For example, smaller communities that have not yet implemented 9-1-1 at all may need encouragement and assistance from federal or state bodies to overcome financial and administrative obstacles to adopting 9-1-1, and this help should be forthcoming at the earliest possible moment. Lo- calities that wish to move from standard to E9- 1-1 capabilities should also receive high priority attention or assistance. In all cases, attention should be directed at understanding and overcoming the various impedi- ments to 9-1-1 and enhanced 9-1-1 outlined above. The committee also believes that attention to these issues should proceed on a broad front relat

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CONNECTING THE PIECES 213 a child to be treated in the ED. Managed care plans generally require that patients pick a primary care physician who then serves as a gatekeeper to other forms of care, including ED care. Care received without prior autho- rization from this gatekeeper-physician or other designated representative may not be reimbursed. Under most plans, however, "unauthorized" ED care will be covered in the event of a serious emergency (as defined by the plan). (See al~so the discussion varier In this chapter on HMO policies on use of 9-1-1.) Managed care plans serve families with typical employer-based insur- ance and are covering increasing numbers of families participating in Med- icaid or other publicly funded health care programs. Implementation of these public programs is intended to provide low-income families with bet- ter access to more comprehensive services, particularly primary care. The focus on primary care may, however, be unfamiliar to many of these fami- lies. The ED has traditionally been their most accessible source of unsched- uled care, and some may continue to seek care there rather than from more appropriate primary care providers. When emergency care is needed, con- tact with the primary care provider may give the ED better access to infor- mation about the patient and facilitate arrangements for appropriate follow up care. Communication with a primary care provider or other plan representa- tive is a major feature of managed care plans. For some participants, par- ticularly in public assistance plans, this element may create problems in using services in intended ways. They may, for example, have difficulty contacting their primary care physician or using after-hours advice services if they lack reliable access to telephone service or cannot speak English well. One study found that the ED could reach by telephone only 21 per- cent of the families of a group of children whose publicly funded managed care plan had denied approval for ED care (Straw et al., 1990~. Also worri- some was evidence that only 60 percent of parents kept appointments that had been scheduled for their children when ED care was denied. Because families such as these can be difficult to contact and may not obtain the care recommended for their children, a decision to deny approval for ED care must be based on reliable communication between the ED and the primary care provider. On both sides, the responsibility for these com- munications should rest with personnel qualified to assess the clinical sig- nificance of information about the child's condition. Some observers have expressed concern that denying approval for ED care during hours when clinics and other primary care sites are not open may increase the possibil- ity that serious problems will be missed (Glotzer et al., 1991~. Both EDs and managed care plans should ensure that their mutual communication responsibilities receive serious and sufficient attention and that they are alert to lapses that may occur.

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214 EMERGENCY MEDICAL SERVICES FOR CHILDREN Improving Follow-up Care Most children treated in EDs do not require admission to the hospital, but many do need further care at home or from a primary care provider. Too often, however, ED recommendations for such care are not followed (Jones et al., 1988; Nelson et al., 19911. Several factors appear to contrib- ute to th~s [allure -to comply -huh instructions. Jones and her colleagues (1988) found that patients who had no regular health care provider or who had difficulty arranging for temporary care of their children were signifi- cantly less likely to obtain recommended follow-up evaluations. For low- income families, the recommended treatment may prove too costly. Investi- gators in Boston found, for example, that the quantity of a commercial oral electrolyte solution needed to treat a seriously ill child would cost nearly 5 percent of a family's monthly grant from the city's Aid to Families with Dependent Children program (Meyers et al., 1991~. Patients and their families may also fail to remember or to understand the instructions given to them in the ED. A recent study found that, on leaving the ED, parents in the control group could recount accurately as little as 5 percent of the guidance they had received on "worrisome signs" that should prompt them to contact the ED again (Isaacman et al., 1992a). Language and cultural differences between patients and providers may make it notably difficult for ED physicians to communicate successfully with their patients. Interviews with Hispanic patients in one emergency room revealed that misunderstood instructions resulted not only in failure to seek recommended care but also in occasional adverse effects from mistaken care (Narita, 1991~. EDs and other parts of the EMS-C system need to explore ways to achieve better compliance with the care that they recommend. Compliance would be a chapter, if not a book, in itself, and communication skills of the health care provider are probably the most important factor. Nonetheless, the various parts of the EMS system can take positive steps. For example, mechanisms for routine follow-up contact with patients can be instituted or expanded. Telephone calls within a week of an ED visit have helped to increase the proportion of patients who seek recommended care (Jones et al., 1988; Nelson et al., 19913. Standardized delivery of simplified instructions has been shown to improve parents' ability to recall correctly the information they were given on medications and on positive and negative signs in their child's recovery (Isaacman et al., 1992a). For- mal programs have been developed by some pediatric EDs for instance, Bronx Municipal Hospital Center in New York and Children's Hospital of Philadelphia-to follow up on children about whom they are worried, such as those with abnormal laboratory results or those who failed to return for follow-up examinations. Such programs, successfully staffed by nurse prac

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CONNECTING THE PIECES 215 titioners and physician assistants, can help foster compliance with treatment recommendations as well as identify possible deterioration in a child's con- dition before a crisis develops. EDs and other emergency care providers that serve a culturally diverse population may need to offer services such as trained interpreters. Staff may need better tra~x~ng in cultural differences related to expectations and understandings regarding health care. One model effort is the cultural di- versity training manual that the EMS-C demonstration program in Washing- ton State developed for use in a course for ED staff (Washington EMS-C Project, 1991~. It has received support from the state's hospital community and has generated interest in similar training for prehospital and primary care providers. Rehabilitation Services As improvements in EMS-C, including trauma centers and critical care facilities, lead to increased survival of more seriously injured children, the need for rehabilitation services increases. Children with spinal cord inju- ries and traumatic brain injuries account for a large portion of the patients needing rehabilitation; necrologic damage secondary to other injuries and illness adds to this population (IOM, 1991b). Burns may require substantial long-term rehabilitation and plastic surgery. Twenty percent of hospital admissions for burns involve children, most of whom are 2 to 4 years or 17 to 25 years of age (CDC, 1992b). Rehabilitation may benefit other injured children as well; fractures and other nonneurologic injuries can leave func- tional limitations for as long as six months after discharge from the hospital (Wesson et al., 1989~. The value of early and well-integrated rehabilitative care is supported by the success of the regional pediatric trauma program at Johns Hopkins University Hospital in Baltimore, Maryland; among the children more than 2 years of age, 88 percent have recovered without major motor or intellec- tual deficits (Hailer and Beaver, 1989~. Operational configurations for pe- diatric rehabilitation programs can differ; for instance, they can be based in a freestanding facility, a hospital-based freestanding program, or an inte- grated inpatient program. These differences can, in turn, lead to differences in the timing of rehabilitative interventions and in the mix of providers (acute care, primary care, outpatient specialists) who participate in manag- ing a child's care (Quint, 1992~. Regardless of the specifics of a particular program, a child's acute care providers must take into account the need for longer-term rehabilitative care. Early planning for such care and coordination between acute care services and rehabilitation providers will help ensure that a child gets ap- propriate care. The District of Columbia EMS-C Project (1991) focused on

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216 EMERGENCY MEDICAL SERVICES FOR CHILDREN the residual effects of traumatic brain injury and developed tools to assess the rehabilitation needs of these children. This project also developed a guide that nurses and other case managers can use in arranging transfers of children to rehabilitation programs (Wright, 1990~. Physical rehabilitation may be the most obvious need. Nevertheless, children. need access to other services to address the psychological and behavioral consequences of injury. Social services that can assist families in managing the additional demands placed on them are an important ad- junct to care of the child (Quint, 19924. In sum, the range of services that contribute to rehabilitation is quite broad. Unfortunately, these services are often poorly coordinated, making it difficult to determine what resources are available and to realize the most effective use of them. Again, this may be an arena in which a federal center and, especially, state agencies (see Chapter 8) can play a helpful role. FEEDBACK Very early in its discussions, the committee agreed that more and better feedback throughout EMS and EMS-C systems would promote optimal pa- tient care and effective linkages between system components. Feedback takes many forms. Information on performance and patient outcomes should flow within the various components of these systems as well as between them. Communication needs to occur as an individual patient progresses through the system components; it also needs to take place in a more sys- tematic and comprehensive manner to address the overall aspects of system performance in the care of all patients. Feedback should reach individual providers and the organizational entities in which they work, and the child's private physician should not be overlooked in the feedback loop. It should be informative and constructive; successes should be acknowledged as well as problems. EMS-C systems should seek to develop a systemwide expectation for feedback. Within parts of the system, activities that can meet this need, such as hospital quality assurance or quality improvement programs, may already exist. Systems may, however, have to work at developing channels through which information can flow routinely from one part of the system to another between EDs and EMS agencies or between referral centers and community hospitals, for example. It is important that these information flows be seen as an integral part of the operation of an EMS-C system, not simply as a professional courtesy or an opportunity to assign blame. Feedback and systematic data collection are synergistic. For example, learning the frequency with which patients seek care for various conditions can help planners identify training or equipment needs; it can also help health care professionals target prevention activities more efficiently. In

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CONNECTING THE PIECES 217 turn, being able to collect good data may depend on feedback: when data produce information that is useful to the people who collect it, they have a greater incentive to ensure that those data are accurate and complete. Issues such as these are discussed more extensively in Chapter 7. OTHER IMPORTANT FORMS OF COMMUNICATION Important communication about EMS-C takes place separately from the process of delivering care to children. Planning for and managing EMS-C systems need to bring together providers, administrators, and government officials to ensure that important issues are recognized and competing needs balanced. The participants in EMS-C should also have a good working relationship with the community in which they provide services. Good communication within the EMS-C professional community deserves atten- tion as well. System Planning and Coordination Providers with expertise in EMS-C should play an active role in the orga- nization and operation of EMS systems. They also need to develop working relationships with other influential individuals and organizations whose pri- mary focus is not EMS, such as hospital boards, regional planning groups, and local and state legislators. Only if EMS-C providers do so can they influ- ence system policies and priorities, make people aware of EMS-C concerns, and thus ensure that adequate attention is given to the needs of children. Vocal support for and involvement in the activities of the national and state EMS-C agencies proposed in Chapter 8 may help foster improved system planning and operations. Participation in advisory groups is another avenue at, say, the local or regional level; involvement in EMS councils will influence development of pediatric medical control guidelines, encour- age pediatric equipment purchases, and generally raise the level of under- standing about EMS-C issues. Closer to home, participation on hospital committees enables EMS-C advocates to assemble a "code team" that com- prises the best specialists from key departments in the institution and can respond quickly to an intrafacility crisis. Providing pediatric EMS training programs is often a useful "foot in the door" insofar as it influences the development of pediatric protocols and enhances awareness of special needs of pediatric patients. Communication with the Community Public education efforts are one of the more important forms of com- munication between the EMS-C system and the community it serves. Such

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218 EMERGENCY MEDICAL SERVICES FOR CHILDREN programs should try to reach a broad audience so that they can educate the public about the need for an EMS system, use of the system, and implemen- tation of the system, as well as develop support for EMS-C activities per se. These efforts vary widely: for example, pediatricians teach parents about steps to prevent injury; EMS agencies promote the appropriate use of 9-1-1; and local EMTs, paramedics' nurses, and physicians teach CPR courses. Specific topics that public education should address are discussed at length in Chapter 4. Here, the committee's point is that public education is a significant form of communication that should be an integral part of the activities of EMS and EMS-C systems. An annual event such as National Emergency Medical Services Week, which has been held for several years and recognized by presidential proc- lamation since 1990, provides a valuable opportunity to focus broad com- munity attention on EMS and EMS-C issues. With federal agencies and professional organizations as sponsors, this program has received recogni- tion from state and local governments and has encouraged individual EMS agencies, fire departments, ambulance services, and hospitals to organize community activities. In addition to providing information about child safety to adults, many activities are designed for direct participation by children themselves (ACEP, no date). Injury prevention work with the community should receive an espe- cially high priority. The EMS-C system sees a broad range of injuries; it can identify those that occur most frequently and those that are especially serious. Providers can contribute their expertise and perspective to commu- nity efforts to reduce a variety of injury risks such as those related to automobiles, bicycles, residential hazards, and sports (Stevens, 1992~. As was cited in Chapter 4, for example, Harlem Hospital in New York City studied data on its admissions of injured children to develop an injury prevention program that targeted the specific risks that children in that community face (Barlow, 19921. Their emphasis has been on improving pedestrian and bicycle safety, upgrading playground equipment, and reduc- ing violence. An earlier program in New York City Children Can't Fly- substantially reduced falls from windows by promoting the use of window guards and supporting the passage of legislation requiring their installation (Speigel and Lindaman, 19771. One approach to linking prehospital providers with injury prevention is participation in programs such as the National SAFE KIDS Campaign, which has local, state, and national activities. A directory of violence and uninten- tional injury prevention projects funded by the Maternal and Child Health Bureau of the Health Resources and Services Administration, Department of Health and Human Services (DHHS), offers other models (NCEMCH, 1991~. For example, a New York State Department of Health project aims to reduce morbidity and mortality from childhood home injuries (falls, scalds, burns,

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CONNECTING THE PIECES 219 and poisonings) by training EMTs in primary prevention and encouraging their participation in community efforts. Contact with the National Center for Injury Prevention and Control at the Centers for Disease Control and Prevention in DHHS will also be helpful.8 Professional Communication Opportunities for valuable communication among providers exist through various professional activities. Practitioners who are already active in EMS- C can make use of conferences and publications for the EMS-C community to share information in areas such as clinical observations in caring for children, EMS system planning and operation, and results of research. Con- ferences and publications with a broader focus offer the opportunity to bring EMS-C issues to the attention of colleagues who are not familiar with them. As the historical discussion in Chapter 3 emphasized, professional or- ganizations such as the American Academy of Pediatrics, American College of Emergency Physicians, American College of Surgeons, Emergency Nurses Association, and National Association of Emergency Medical Technicians have been important channels for informing providers about EMS-C. Other organizations whose efforts in this area must not be overlooked include the Ambulatory Pediatric Association, American Association of Critical Care Nurses, American Academy of Orthopaedic Surgeons, American Trauma Society, Association of Air Medical Services, National Association of EMS Physicians, and Society of Pediatric Nurses. Local and regional chapters of national organizations or other groups formed around a common interest give providers a more immediate chance to become acquainted with each other, perhaps facilitating cooperation when future cases require access to outside resources. Public safety and related organizations (such as NENA or APCO, and groups such as the International Association of Fire Chiefs)- even though their concerns extend beyond emergency medical services should also be seen as useful partners in communication about EMS and EMS-C to other groups, health care professionals, and the community at large. One collaborative effort that has developed is the Children's EMS Alli- ance, which began in 1990 as the Year of the Child in EMS. It brings together professional organizations and hospitals to inform the professional community and the public about EMS-C issues (Luten, 19911. The program seeks to educate the membership of participating organizations and to en- hance the operation of EMS systems by fostering cooperation among medi- cal and administrative organizations. The EMS-C demonstration grant program has placed particular empha- sis on information exchange among grantees and with other audiences as

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220 EMERGENCY MEDICAL SERVICES FOR CHILDREN well. National conferences have brought grantees together periodically to share the results of their work. For a major conference in 1991, the grant- ees prepared a report, Emergency Medical Services for Children: A Report to the Nation, which presents their conclusions and recommendations re- garding areas where further work is needed (Seidel and Henderson, 1991~. One project (the National EMS-C Resource Alliance, or HERA) publishes EMSC News on a quarterly basis to bring information about EMS-C projects and innovations in pediatric emergency care to a broad audience. Another EMS-C effort (the EMS-C National Resource Center) provides information to grantees on legislative activities and possible funding sources. Many EMS-C projects have distributed samples of training materials and other grant products to other grantees, and catalogs of the materials produced by the grantees have been published (Shaperman and Backer, 1991; NERA, 1993~. For many of the projects, however, once EMS-C grant funding ends no other source of funds may be available to continue produc- ing copies of these materials; some materials may remain available if they have been adopted by state or local government or another sponsor such as a medical school. Even when materials continue to be available, organiza- tions may not be able to support the "marketing" necessary to make the EMS community aware of them or to undertake the appropriate updating as information increases and technologies change. am. . ~ . _ ~ ~-~ .r - - ~ ~ ~_ OF , the committee believes that post-M-(-grant difficulties such as these- for instance, in producing materials and informing people of their availabil- ity- argue for ongoing federal support for an organization that can provide clearinghouse services; these might include collecting and evaluating prod- ucts developed by the demonstration grants and by other groups. This work might be based within a federal agency such as the EMS-C center that the committee proposes in Chapter 8, or it might be performed by other organi- zations (public or private) under a federal contract or grant. (A variant on this idea is the creation of one or more "national resource centers"; for sim- plicity the term " clearinghouse" is retained here.) A clearinghouse might also help develop new materials that facilitate provider communication. For ex- ample, a prehospital resource guide produced by the AAP (1990b) and a re- cently published directory of injury prevention professionals (Children's Safety Network, 1992) might serve as models for other EMS-C publications. As proposed in Chapter 8, a federal center as well as state agencies might support other types of consultation. For instance, the federal office directly or indirectly could make materials or advice available to various community organizations and professional associations that wish to estab- lish EMS-C coalitions. Guidelines and consultation for public policy activ- ity at the state level are also needed, so that the public can be mobilized to support needed changes in EMS-C through legislation and regulatory change. Finally, a clearinghouse or resource center activity might be helpful in gen

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CONNECTING THE PIECES 221 crating advice about long-term funding options, so that coordination of EMS- C activities does not falter upon the termination of the EMS-C demonstra- tion projects. SUMMARY This chapter explores the critical role that communication plays in the successful operation of systems of emergency medical care. It devotes considerable attention to issues of public access to the EMS system, espe- cially through promotion of 9-1-1 and E9-1-1 emergency response systems. The committee's firm belief in the advisability of universal adoption of 9-1-1 or E9-1-1 led to a formal recommendation that each state ensure implemen- tation of such systems (see Box 6-1~. Telephone access to poison control centers, especially those certified by the AAPCC, fills a need among the public and emergency care providers for specialized guidance for managing the care of children exposed to potentially toxic materials. Parents also seek telephone advice from hospital EDs; this service can provide benefits, but it also poses risks because no direct assessment of a child's condition can be made. The committee strongly advocates appropriate training, clear protocols, careful documentation, and routine monitoring in ED programs offering telephone advice. Prehospital services employ a range of communications technologies (e.g., standard telephone links, radio systems, microwave networks, and satellite links). On-line medical control requires direct communication be- tween designated medical personnel and prehospital providers. It is used for authorizing ALS procedures and advising on other aspects of prehospital patient management. EMS systems vary in the extent to which they use on- line medical control. In the hospital setting, good communication is critical. Emergency care may require ED consultation with specialists in the hospital or in the com ,"' ~ i"" ~ i'"', "I ' 'I'm "I ~ ~ ' " "' "~''~''~"'~''~-'~' ~"'~ "'' " "'' ~'~"~"'~'-~"' ~ I've '" ~'"""'~''~ "'"'''''" ~ ~ ~"'''~.' " '"'~''-"'"'~"'' ~ 2~'~'~'" " ''' ''I , ,: ~ ~ ~ ~ ~ ~ ~ ~: ~ ~ ~ , I, ~ ~ ~ ~ ~ ,~ ~ Aft"' "' "'"'""~'~"""'""'~'"'"''""'''""'"'"'"""'~;~""~''" """""'"'am'' "" ~ """',""'"'",,,,,,,,, " '',,"'',,

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222 EMERGENCY MEDICAL SERVICES FOR CHILDREN munity as well as a child's primary care provider. Consultation with re- gional or national experts at pediatric referral centers or poison control centers may be needed and is facilitated by mechanisms such as telephone hot lines and facsimile communication. When children must be transferred to referral centers, clear communication between hospitals and health care providers involved is essential to ensure that v~1 cling and administra- t~e ~nforn,~tion is exchanged. Here the committee believes that written transfer agreements between hospitals make an important contribution to speeding the transfer process by settling many procedural and administra- tive matters in advance. Development of centralized communication ser- vices also may ease transfer arrangements and help make efficient use of regional resources. Communication plays an important role in ensuring that an ill or in- jured child obtains the full range of services, from prevention to acute care and on to rehabilitation, that comprise EMS-C. The committee thus argues that EMS-C systems must give special attention to follow-up in three areas: primary care, post-ED care, and rehabilitation. More and better feedback is needed throughout EMS and EMS-C sys- tems to promote optimal patient care and effective linkages between system components. Information regarding care for individual patients and regard- ing the overall pattern of care is needed. EMS systems may have to work at developing channels through which information on system performance and patient outcomes can flow routinely. Feedback needs to reach individual providers as well as managers and administrators and may require system- atic data collection. Important communication about EMS-C should occur independently of the delivery of care to children. Providers with pediatric expertise need to be active in the organization and operation of EMS systems, and public education should be an integral part of the activities of EMS and EMS-C systems. Public safety organizations, even though their concerns extend beyond EMS per se, should be viewed as useful partners in communication about EMS and EMS-C to other public agencies, health care professionals, and the community at large. The EMS-C demonstration grant program and the efforts of individual grantees have encouraged communication across the country. In the committee's view, the need to maintain and build on these activities argues for creation of a national EMS-C clearinghouse that can collect and evaluate EMS-C materials and serve as a focal point for information exchange. NOTES 1. Some experts in the public safety community argue that 9-1-1 should be thought of as a "response" number rather than an "emergency" number, for at least two reasons. First, many people have difficulty distinguishing an emergency from a nonemergency (i.e., they make

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CONNECTING THE PIECES 223 erroneous distinctions about "real" emergencies); second, 9-1-1 is intended to provide access to potential dispatch of any type of public safety response unit (not just medical services). In certain situations, however, this can be problematic, as when the public uses 9-1-1 to access any city service and thereby clogs the telephone system with nonemergency calls. A single, communitywide seven-digit phone number, perhaps available 24 hours a day, should be estab- lished to handle the calls for nonemergency services. 2. One advantage of 9-1-1 apart from being easy to remember, is that it meets require- ments ~r num~g plans and switching conti=~rations of ~e telephone industry; 9-~! ~s unique, for instance, in that it has never been authorized as an area code or a service code (NENA, no date). 3. The potential dangers when HMOs do not properly advise members about 9-1-1 are illustrated by Kerr (1986). He reports on three adult HMO enrollees with severe cardiac symptoms who followed HMO procedures to call the triage physician and were directed to distant EDs; all patients endured considerable delay in reaching appropriate emergency and definitive care and suffered more serious sequelae than might otherwise have been the case. A later article (Kerr, 1989) gave the following examples of life-threatening events in the HMO context: heart attack, stroke, loss of consciousness, poisoning, uncontrolled bleeding, acute allergic reaction, shock, convulsions, and the like; non-life-threatening cases included rash, minor chest pain, high fever, vomiting, asthma, allergic reaction, and gas pains. Exactly where the main problems accounting for emergency situations for children would fit is not clear. 4. EMS communication systems are currently confronting limitations in the availability of radio frequency spectra. At present, eight med-channel pairings are allocated for regional EMS systems. Operating at frequencies in the 460 megahertz (MHz) range of the ultra-high frequency (UHF) spectrum, these channels are subject to significant "channel crowding" and "bleed over," especially in urban areas. Along the border with Mexico, some EMS radio systems encounter interference because allocation of frequencies is not covered by enforceable treaties with Mexico. Additional frequency spectra, dedicated to EMS use, must be authorized by the Federal Communications Commission (FCC); the FCC has recently released new 800 MHz and some 900 MHz spectra. 5. The EMS-C projects cited in this chapter are those of the federal demonstration grant program supported by the Maternal and Child Health Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services. 6. In addition to the medical considerations in patient transfers, hospitals must be aware of legal obligations. Federal legislation the Consolidated Omnibus Budget Reconciliation Act of 1985 (P.L. 99-272) and the Omnibus Budget Reconciliation Act of 1989 (P.L. 101-239)- established regulations designed to ensure that patients receive appropriate assessment and stabilization before any transfer is made, to ensure that transfers are made in appropriate vehicles and to facilities that are able to provide necessary care, and to deter "dumping" of patients from one hospital to another on the basis of the patient's ability to pay. 7. Care for children with severe burns and the use of burn centers illustrate the critical need in EMS-C for attention to optimal sites for care and to long-term follow-up. Burn centers might, for example, have direct linkages with emergency departments and community hospi- tals, so that children in this situation would be triaged directly to them rather than to the hospital's intensive care unit. EMS-C systems should promote early planning for the extended follow-up care that many of these children will need for procedures such as plastic surgery. Ideally, this planning should look to a medical home or other source of primary care to assure continuing attention to the special health care needs of children with severe burns. (We thank one of our anonymous reviewers for elucidating this particular example.) 8. The National Center for Injury Control and Prevention was established at the Centers for Disease Control and Prevention in June 1992. Previously, injury prevention activities were the responsibility of the Division of Injury Control of the National Center for Environmental Health and Injury Control.