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2—
Health Applications of the Internet

Many health-related processes stand to be reshaped by the Internet. In clinical settings, the Internet enables care providers to gain rapid access to information that can aid in the diagnosis of health conditions or the development of suitable treatment plans. It can make patient records, test results, and practice guidelines accessible from the examination room. It can also allow care providers to consult with each other electronically to discuss treatment plans or operative procedures. At the same time, the Internet supports a shift toward more patient-centered care, enabling consumers to gather health-related information themselves; to communicate with care providers, health plan administrators, and other consumers electronically; and even to receive care in the home. The Internet can also support numerous health-related activities beyond the direct provision of care. By supporting financial and administrative transactions, public health surveillance, professional education, and biomedical research, the Internet can streamline the administrative overhead associated with health care, improve the health of the nation's population, better train health care providers, and lead to new insights into the nature of disease.

The capability of the Internet to support these applications depends on whether the relevant technical needs are met and whether the operational aspects of the systems involved are understood and manageable. As with any information technology system, the technical requirements depend heavily on the specific characteristics of the individual systems—the number of anticipated users, degree of real-time interaction desired, number of simultaneous sessions that must be supported, and so on.break



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Page 57 2— Health Applications of the Internet Many health-related processes stand to be reshaped by the Internet. In clinical settings, the Internet enables care providers to gain rapid access to information that can aid in the diagnosis of health conditions or the development of suitable treatment plans. It can make patient records, test results, and practice guidelines accessible from the examination room. It can also allow care providers to consult with each other electronically to discuss treatment plans or operative procedures. At the same time, the Internet supports a shift toward more patient-centered care, enabling consumers to gather health-related information themselves; to communicate with care providers, health plan administrators, and other consumers electronically; and even to receive care in the home. The Internet can also support numerous health-related activities beyond the direct provision of care. By supporting financial and administrative transactions, public health surveillance, professional education, and biomedical research, the Internet can streamline the administrative overhead associated with health care, improve the health of the nation's population, better train health care providers, and lead to new insights into the nature of disease. The capability of the Internet to support these applications depends on whether the relevant technical needs are met and whether the operational aspects of the systems involved are understood and manageable. As with any information technology system, the technical requirements depend heavily on the specific characteristics of the individual systems—the number of anticipated users, degree of real-time interaction desired, number of simultaneous sessions that must be supported, and so on.break

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Page 58 Many of these factors, in turn, are influenced by considerations other than network performance. These include organizational competencies, changing preferences and expectations of consumers and care providers, reimbursement policies for different health services, availability of complementary technologies, and laws. The confluence of so many factors confounds attempts to predict viable future applications of the Internet in the health sector. This chapter presents a broad overview of the types of applications that the Internet can support in consumer health, clinical care, financial and administrative transactions, public health, health professional education, and biomedical research. It draws on a series of site visits by the committee (these visits are summarized in Appendix A) and other briefings to the committee to examine applications that have been deployed and that are still in the early stages of conceptualization. The chapter attempts to assess the technical capabilities demanded of the Internet in terms of bandwidth, latency, security, availability, and ubiquity (as defined in Chapter 1). Specific technical information is presented where possible, but because of the nascent nature of many Internet applications in the health sector, often the most that can be offered is a qualitative assessment. Accordingly, a ranking scale is used to assess the importance of each technical dimension to each class of applications. These dimensions are ranked on a scale of one to four, with one plus sign (+) indicating little importance relative to the other dimensions and four plus sings (++++) signifying the most importance. The chapter also identifies organizational- and policy-level issues that will influence the way the Internet is deployed in different health applications and notes, where applicable, other technologies that must be developed to make certain applications feasible. Specific technical, organizational, and policy issues are addressed in subsequent chapters of the report. Consumer Health Consumer health is one of the areas that could be most dramatically reshaped by the Internet. Consumer health refers to a set of activities aimed at giving consumers a more pronounced role in their own health and health care, ranging from the development of tools for self-assessment of health risks and management of chronic diseases, to home-based monitoring of health status and delivery of care. This area is similar to public health (discussed later in this chapter) in that it aims to provide consumers with the information and tools needed to improve their health, but it is less concerned with the detection of regional outbreaks of disease and is not part of government-based reporting structures. The Internet could become a significant enabler of consumer health initiatives in that it pro-soft

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Page 59 vides an increasingly accessible communications channel for a growing segment of the population. Moreover, in comparison to television—also a widely available medium for reaching consumers—the Internet offers greater interactivity and better tailoring of information to individual needs. These capabilities may lead to significant changes in consumer behavior (e.g., cessation of smoking, changes in diet) that could greatly improve health. Ongoing trends in health care are likely to reinforce the shift toward consumer-oriented health information. Since the mid-1960s, patients have been encouraged to take a more active role in their own health care, and care providers have recognized the value of engaging patients to participate more meaningfully in their own care. Furthermore, attempts by care providers and managed care plans to streamline services and cut costs have shortened hospital stays, increasing the need for patients and their families to understand how to provide care themselves. Greater emphasis is being placed on preventive care, which requires consumers to understand health risks and the effects of different behaviors (such as smoking and dietary habits) on their health. These trends heighten the need for consumers to have access to reliable health information and open channels of communication to care providers and other health professionals. Consumer health initiatives that rely on the Internet reflect, and could even drive, significant changes in the structure of the health care industry. Concurrent with changes in the economics of the health care delivery system, the duration of a medical consultation is steadily declining, and the availability of practitioners for substantive discussions between visits is decreasing. Continuity of care is increasingly disrupted as patients change care providers in response to changes in their health insurance plans. These trends favor consumers who are well informed and autonomous. Consumer health initiatives attempt to involve patients more actively in care-related decision making and enable them to exercise greater control over their health. Indeed, the Internet could change the culture of health care from one in which patients are viewed as recipients of care to one in which they are partners in care. Eventually, they may be able to use the Internet to access and update their personal medical records or receive care in their homes. Consumer-Oriented Health Web Sites Over the past few years, leading providers of health information have identified the Internet as an effective medium for reaching large numbers of health consumers. The most visible aspect of this recognition is the explosion of Web sites geared to consumer health issues (Table 2.1). These sites are dedicated to the diagnosis and management of diseases, thecontinue

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Page 60 TABLE 2.1 Examples of Commercial Health-Related Web Sites Site Content Americasdoctor.com Offers free, private chats with physicians. Also sells health-related items. Betterhealth.com Covers various aspects of physical and emotional health. Includes expert advice, feature articles, and support groups. Discoveryhealth.com In conjunction with Intelihealth, offers disease-related information, health news, online prescription ordering, and risk-assessment services. drkoop.com Offers health information and more than 120 chat groups with advice from a physician. Also allows consumers to check for drug interactions. Plans to add capabilities for consumers to keep track of their medical histories and medical expenses. Healtheon/WebMD.com Started as a subscription service for doctors but has a free consumer site that offers health news and information, a physician directory, and condition-specific support groups. InteliHealth.com A joint venture between Johns Hopkins University Hospital and Health System and Aetna U.S. Healthcare that offers health news; access to the Johns Hopkins health library, drug databases, and journal abstracts; and catalog items for sale. Mediconsult.com Focuses on patients with chronic ailments, offering information on 60 common conditions. For a fee, consumers can pose questions for a physician. Medscape.com Offers original, peer-reviewed reports and journal articles organized by specialty and intended for both health professionals and consumers. A dedicated consumer site is under development. OnHealth.com Aimed primarily at women, has an alliance with drugstore.com for pharmaceutical purchases and offers guides that rate the health quotient of communities nationally. Thebody.com An AIDS and HIV information Web site aimed primarily at the homosexual community. Thriveonline.com Features alternative medicines, diet, and exercise tips. SOURCES: Carns (1999); Nash (1999). promotion of various healthy lifestyles, and interventions to prevent the onset of disease. The formats range from mailing lists to interactive Web sites, chat sessions, or compilations of online resources. One recent survey suggested that consumers use these sites to gather information on diseases, medications, and nutrition, as well as to find care providers or participate in support groups (Table 2.2).break

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Page 61 TABLE 2.2 Primary Health Activities for Consumers to Conduct Online Activity Percent of Respondents Research an illness or disease 62.1 Look for nutrition and fitness information 20.0 Research drugs and their interactions 11.6 Look for a doctor or hospital 3.7 Look for online medical support groups 2.3 SOURCE: USA Today (1998). The network capabilities required by consumer health Web sites are not especially demanding today, but the requirements could grow over time. Most sites offer text and limited graphics, which do not require significant bandwidth, but the availability of greater bandwidth—especially in the local loop—could enable the design of more sophisticated sites offering educational videos for downloading over the Internet. Security requirements are also minimal because personal health information is generally not exchanged on these sites. Protection is needed for financial transactions related to the purchase of health products, but this requirement is no different than that for other e-commerce applications. Similarly, consumer health Web sites do not demand exceptional reliability because they are unlikely to be used for applications in which lives are at stake. However, consumer health Web sites may drive the need for improved privacy-enhancing technologies. The information sought by consumers on the Internet, and the purchases they make, can reveal much about personal health concerns and problems. To prevent organizations from compiling profiles of their health concerns, consumers may demand greater anonymity in their Web browsing and purchasing and tighter restrictions on the ways in which organizations can use information about their habits. A larger issue is the need for tools to help consumers find information of interest and evaluate its quality. The sheer volume of health information available on the Internet can be overwhelming. For example, a simple Web search for "diabetes mellitus" can return more than 40,000 Web pages,1 and some 61,000 Web sites contain information on breast cancer (Boodman, 1999). To sort through this volume of material, consumers need effective searching and filtering tools that can identify and rank information according to their needs and capabilities and present it in a form that they can understand, regardless of educational and cultural background. Consumers also need a way to judge the quality, authoritativeness, and provenance of the information. The Internet enables anyonecontinue

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Page 62 to publish information, so filtering and credentialing become more important. A recent study found that 6 percent of the 400 sites containing information on a form of cancer called Ewing's sarcoma contained erroneous information, and many more were misleading. Sites contained different (and often incorrect) estimates of basic information such as survival rates (Biermann et al., 1999). Several initiatives are already under way to evaluate the quality of health information on the Internet. The Department of Health and Human Services' Scientific Panel on Interactive Health Communication calls for disclosure statements on Web sites to make it easy for consumers to evaluate the source and authority of information resources (SCIPICH, 1999). Other efforts focus on systems for classifying health Web sites according to metrics such as accuracy, timeliness, completeness, and clarity.2 With these evaluations, standard search engines could provide consumers with a measure of trust in the information they are retrieving—at least to the degree that they trust the organization performing the content labeling. The World Wide Web Consortium, for example, has created a system called the Platform for Internet Content Selection (PICS), which can help users control the types of information retrieved from the Internet.3 To accommodate different perspectives on health and health care (e.g., alternative as opposed to traditional medicine), a wide variety of organizations could rate health Web sites. Additional research may suggest ways of automating the evaluation process, perhaps using metrics such as the number of pointers to, or users of, a given site as indicators of the site's effectiveness (as some search and referral engines are currently doing). Technology could also be used to help prevent alterations of the site's rating to assure consumers that an evaluation was indeed performed by the stated third party. This function requires cryptographic authentication technologies that are currently available but have not yet been widely deployed for this purpose. E-mail between Patients and Providers The Internet can also be used to facilitate electronic communications between patients and care providers, typically in the form of electronic mail (e-mail). To date, e-mail has been used only sporadically between patients and providers, but it is of growing interest. It could prove to be an effective mechanism for improving care and lowering costs because more frequent communications might enable better tracking of a patient's progress or eliminate the need for an office visit. This premise has yet to be tested rigorously in clinical settings, and a number of technical and nontechnical issues need to be resolved (Mandl et al., 1998).break

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Page 63 Bandwidth and availability are not issues in the near term because most messages currently consist of text only and are not used for time-critical communications. The most pressing technical issue is security. Most e-mail exchanges between patient and provider involve discussions of personal health information, which must be suitably protected from breaches of confidentiality and, to a lesser extent, alteration. Most e-mail is not encrypted during either transmission or storage, and its point of origin is not authenticated. It is therefore much easier to forge an e-mail message than a clinician's note or telephone call. Several approaches are available for improving the security of e-mail exchanges. Secure Sockets Layer (SSL) encryption, which is commonly used to encrypt e-commerce transactions (see Chapter 3 for a description of the technology), can be used to protect communications between a user's personal computer and the electronic mail server. Other protocols, such as Pretty Good Privacy (also described in Chapter 3), can be used to protect communications as they move across the network between the sender and recipient. User authentication can be enhanced through the use of nontrivial user names and passwords or more secure forms of authentication, such as those based on public key encryption (also described in Chapter 3). The more daunting barriers to patient-provider e-mail are institutional policies for confidentiality and for integrating e-mail into work flows. Most e-mail systems are without even the most basic protection of the confidentiality of message contents. Mail received at the place of work is, by law, fully accessible to the employer. One study showed that patients are hesitant to use e-mail from work to communicate about their health for fear that employers or insurance companies might use the information in ways that affect them personally (Fridsma et al., 1994). To avoid the risk of having messages discoverable at a place of work or other sensitive locations, individuals can store their e-mail files on the server of a trusted third party and/or encrypt messages for storage, but rules regarding disclosure still need to be developed. Health care organizations are also concerned that e-mail might overload care providers with yet another task in the context of increased clinical and administrative burdens. There are related concerns about the liability of providers if, for example, they miss a subtle but (in retrospect) irrefutable and important question or comment in a patient's electronic note. Many organizations have yet to establish policies regarding the quality of service, such as a maximum time to respond or even acknowledge receipt, that patients can expect from e-mail with providers. Another important concern is economic: there are currently no mechanisms for paying providers for what could be as taxing or time-consuming a clinicalcontinue

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Page 64 activity as any in-person clinical visit. Furthermore, no policies and procedures have been developed for incorporating e-mail into electronic patient records. As a consequence, decisions made on the basis of e-mail information are at risk of having no documented basis in the record. Safe and effective use of e-mail for clinical discussions between patients and providers will require the development of policies to govern its use. These policies will need to address issues of confidentiality, data integrity, authentication, timeliness, and the appropriateness of the use of e-mail for different kinds of discussions. In some cases, telephone or face-to-face conversations may be considered a more appropriate form of communication. These policies will need to be articulated to all consumers and also embodied in the e-mail user interfaces so that health care consumers can have realistic expectations about the use and safety of clinical e-mail. Online Health Records The Internet is emerging as a medium for giving consumers direct access to their personal health records. Historically, care providers have maintained voluminous records of patient encounters within their organizations, documenting dates and times of consultations, diagnoses, lab results, prescriptions, and more. These records are maintained and largely controlled by care providers, although patients have the right, in some states, to review their records and propose amendments as necessary. In the past two years, however, a number of new Web sites have begun to allow consumers to store their own health records online.4 The potential benefits of these sites are many. With them, consumers can create comprehensive, longitudinal records that capture information about the care received from different organizations over an extended period of time. Consumers can use these records to help monitor and evaluate their health status, and they can grant access, if they wish, to different providers for purposes of care. Many sites provide some sort of override feature that enables care providers to gain access to a patient's records in an emergency situation—something that is much more difficult to do if the records are not stored online.5 Like e-mail used for clinical purposes, Web-based medical records require considerable attention to security to minimize the risks of inappropriate disclosure. Personal medical records must be protected against inappropriate disclosure, both to outsiders who attempt to break into the system and to those who operate and maintain the Web sites. Most existing services use SSL encryption to protect data communications between users and the host Web site and a combination of user names and passwords (transmitted securely over the Internet) to authenticate end users.break

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Page 65 Systems operating with user identification and passwords can provide reasonably—but not fully—secure access to many types of applications. If online records become more widely used in the provision of care, then it may be advisable to enhance the robustness of user authentication, perhaps with public key encryption systems and user certificates (see Chapter 3). The PCASSO system being developed by Science Applications International Corp. (SAIC) and the University of California at San Diego, for example, uses public key encryption and a challenge-response token, as well as a password, to protect patient information at a far higher level than is possible with SSL.6 Other technical requirements will be modest in the near future unless online patient records become more complex and more widely used in the provision of care. At present, most online medical records consist primarily of text and demand little bandwidth for fairly rapid downloading. If such records begin to include medical images (e.g., X rays, computed tomography (CT) scans, and mammograms), then much higher bandwidth would be needed for timely downloading (see the section on medical images below). Similarly, reliability requirements are not high because online records are still supplements to, as opposed to replacements for, the records maintained by provider organizations; an inability to access an online record is unlikely to interfere with the provision of care. If online records become more widely used and more complete than providers' records, then reliability could become more of a concern. Scalability is not an issue, either, because records are not needed simultaneously by multiple users. Ubiquity of access to the Internet is a significant consideration in the development of online medical records because it would ensure that all consumers could keep such records and that those records could be accessible from a large number of unpredictable locations, such as a consumer's home or office, a care provider's office, or an ambulance responding to an emergency. A number of business and policy issues need to be resolved as well. Organizations that store online health records will need to develop policies that balance the need for privacy and security against the need for ready access to records by patients and eventually by care providers and perhaps insurance companies, researchers, and others. Rules may also be needed to govern organizations' use of the online records they maintain. Under what conditions will they be able to provide consumers with recommendations about necessary medical tests or possible drug interactions? To what extent should they be allowed to mine patient records for information that might lead to direct marketing efforts? Under what circumstances should records be made available to public health agencies and researchers?break

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Page 66 Patient Monitoring and Home Care The Internet offers the opportunity for improved monitoring of consumer health and, potentially, provision of in-home care through video-based consultations with care providers (discussed in the Clinical Care section, below) and control of medical equipment (e.g., pacemakers and dosimeters) deployed in the home. The goals of such activities are to assist in the early detection of potential health problems, ranging from heart attacks to congestive heart failure and diabetes, and to reduce the need for clinical intervention and costly hospital stays.7 Remote consultations to the home may be most useful for monitoring patients with ailments such as congestive heart failure and end-stage liver disease. These applications do not require video imagery; the provider simply listens to heart and lungs, taking vital signs and pulse oximetry. In-home care is consistent with existing trends in the health care industry. Since 1975, the number of home health agencies has grown from 2,300 to almost 8,500, while the number of hospital beds per 1,000 enrollees has declined from 51 to 28.8 Similarly, the number of patients receiving home care nearly tripled between 1982 and 1994. These trends reflect, in part, attempts by health insurers and health management organizations to reduce the costs of care associated with long hospital stays.9 To date, few attempts have been made to monitor patients at home. Most efforts have focused on chronic conditions, such as diabetes, asthma, and congestive heart failure, for which well-established protocols exist for home care. The devices used for monitoring are minimally modified copies of devices used in hospitals. Little effort has been made to develop or distribute small devices that mimic the functionality of much larger hospital counterparts with automated quality control and calibration and remote polling and configuration by authorized care providers. Almost none of these devices is as portable or easy to use as a standard pager. In part because of these limitations, home monitoring has not grown as much in popularity as have consumer information on the Web and patient-provider e-mail. In January 2000, however, Medtronic Inc. announced plans to work with IBM Corp. and Microsoft Corp. to develop a system that will enable heart patients with implanted pacemakers, defibrillators, and experimental cardiac-pacing and -monitoring devices to transmit cardiac data over the Internet to their cardiologists. Eventually, care providers may be able program the devices over a secure Internet connection without requiring patients to visit their offices. Developers of the system posit that it will result in fewer office visits and hospitalizations, thereby lowering costs while improving patient monitoring and care, but a means of charging for the monitoring service has not yet been devised. Medtronic hopes that itscontinue

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Page 67 secure Internet system will find utility beyond cardiac patients, perhaps allowing patients with implanted drug pumps to have their doctors change the drug regimen remotely over the Internet (Burton, 2000). Continued advances in computing and communications technologies could enable more widespread deployment of home-based health monitoring systems. For more than two decades, the feasible density of transistors on an integrated circuit has been increasing by a factor of 10 every 7 years. Memory densities have increased even faster, gaining an order of magnitude every 6 years. As a result, medical devices such as stethoscopes, glucometers, and electrocardiogram monitors already can be equipped to support Internet connections and deployed to consumers at low cost. Over time, computing and communications capabilities will probably be incorporated into a number of other devices that could serve as sources of health information, whether bathroom scales or exercise equipment. If a house is networked, then it would be possible to use a personal computer to connect and control a number of medical monitoring devices. Although the number of homes with conventional local area networks (LANs) is small (mainly because of the high cost of wiring a house appropriately and the disruption involved), Ethernet-like connectivity can be provided to any room in a house through devices that are either wireless or attached to the existing telephone or electric wiring. Indeed, advances in microelectromechanical systems (MEMS) devices, combined with those forecast in microelectronics, biosensors, and biomaterials, could lead to revolutionary changes in therapies, delivery of medication, and monitoring and alerting systems for the elderly and those with chronic conditions. Devices already on the market, such as pacemakers, wireless stethoscopes, and blood sugar monitors, could be augmented with networking capabilities. High-resolution digital video cameras that are acquired by consumers for recreational or other purposes might become useful in health care applications. Home-based monitoring is unlikely to require high-bandwidth connections from homes to the Internet because individual messages tend to be small. In demonstration projects, however, investigators have had to work hard to ensure that all participating patients had uninterrupted access to even modest bandwidth, often contracting with the local cable or telephone company to hook up a specific home. The installations, connectivity, and subsequent support costs have accounted for a large portion of the cost of the monitoring efforts. Bandwidth is a more significant issue for provider organizations, which will need to ensure that their facilities can handle the aggregate load of monitoring numerous devices (e.g., if hundreds of thousands of patients with congestive heart failure are monitored at home). At this point, it is difficult to estimate the aggregate bandwidth needed by providers of monitoring services because it iscontinue

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Page 121 with other federal health and science organizations. There is interesting work at the National Cancer Institute (NCI) on cancer trials using networked information facilities and proposals to mount collaborative national (and international) databases for other clinical trials that might reduce cost or increase effectiveness. Commercial companies are building and making available similar ''one-stop-shopping" information resources for patients interested in participating in clinical studies. Since clinical research requires detailed compliance with complex diagnostic and treatment schedules (called clinical protocols), there are both commercial and academic efforts under way to develop detailed, participant-specific protocol guidelines that can be transmitted from a central data management unit via the Internet to participating clinical investigators. Encounter-specific guidance and secure data capture via wide-area computer networks promise to improve the speed with which clinical trials can be completed, as well as to reduce errors of omission and commission in the conduct of clinical research. Current estimates indicate that each day of delay in introducing a new drug to the marketplace costs pharmaceutical companies $1 million in lost revenues (CyberAtlas, 1999). Security is an extremely important technological consideration in clinical trials. In addition to concerns about the privacy of patients involved in the trials, there will probably be significant commercial interest in some of the resulting data sets, making security and control of the raw data a serious consideration. Tools will need to be in place to authenticate the source of information, protect the confidentiality of information collected, and protect its integrity. Ubiquity of access is important to the extent that it will allow researchers to draw upon larger population bases for their studies. Depending on the protocol for the trials, access at a physician's office or public kiosk may or may not suffice, and in some situations, access may be needed from the home. Technical Requirements for Biomedical Research Bandwidth ++++ The bandwidth requirements for many biomedical research applications are high. Teleconferencing and high-resolution, real-time transfer of images (during remote instrument manipulations, for example) have very high requirements for bandwidth. There is also a trend in the research community toward increasing dependence on the Internet for communicating data and scientific models. It is impossible to predict the long-term needs of biomedical research, but it is likely that the needs for bandwidth will increase as researchers invent new methodologies for the large-scale collection of data about entire genomes, organisms, and com-soft

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Page 122 munities of organisms. These data may be collected at points all over the world at very high rates. Aggregated traffic back to individual research centers could be very high. Latency +++ In general, biomedical research is not a time-critical enterprise. There are exceptions, of course, such as the use of the Internet to drive biomedical research instruments (as, for instance, in remote telemicroscopy), where feedback is critical for positioning samples or for adjusting the settings of the instruments. Large distributed simulations also require low latency to improve the speed of their calculations. Availability ++ For biomedical research, the availability of the network is of moderate importance. Research efforts are not often time-critical and can tolerate low-level losses of data or network unavailability. Obviously, long stretches of such poor performance would be unacceptable, but the needs for availability are not as great in this domain as they might be in clinical care or business applications. Nonetheless, as the Internet plays an ever larger role in research (that is, as it becomes the primary means for accessing primary data, publications, and professional colleagues), it is likely that availability will become more important and even mission-critical for the biomedical research enterprise. Most importantly, only if they perceive an available Internet will reticent adopters of Internet technologies embrace these technologies fully. Security ++ For the most part, biomedical research deals with public domain information, so the security requirements for the network are not stressed. Since most studies can be done on aggregate data in which no individual patient is identified, issues of privacy are not paramount. If the research deals with patient information (clinical or genomic), however, then security requirements of the Internet jump to the highest levels. Ubiquity ++ For biomedical research, the ubiquity of the network is not a critical factor. Most major medical centers and research institutions have network connectivity and are motivated to maintain first-class resources tocontinue

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Page 123 support their investigators, making the issues of universal access less relevant. One exception to this might be an epidemiological study in which data are collected from people over the Internet. In that case, the network would need to be accessible to all patient populations of relevance to the study. Summary Internet applications promise to improve the quality of, and access to, health care while simultaneously reducing its costs. Realizing these applications requires overcoming a number of technical and nontechnical obstacles. For example, quality of service across the Internet must be improved to provide the bandwidth and latency required for applications such as video consultations and remote surgery. Reliability must be improved to ensure that failures of critical network connections occur only infrequently and impose minimal consequences, especially where human life is at stake. Security capabilities must ensure the confidential transmission of health information across the Internet while vouching for the integrity of the information. Access controls must take into account the different access privileges of different kinds of health care workers. And, to achieve its most far-reaching effects, all care providers and patients must have access to the Internet. Additional detail on these needs is provided below. Chapter 3 goes on to examine technical challenges in further detail, while Chapters 4 and 5 provide additional insight into the organizational and policy issues that must be resolved. Bandwidth High bandwidth is important for a number of health applications, especially those relying on the transmission of real-time video or large medical or biomedical images. Beyond high bandwidth for specific data-intensive applications there is a need for high aggregate bandwidth to support a high volume of moderately data-intensive applications, such as transfers of large medical records. But bandwidth is not the most important capability for all health care applications. Many consumer health and public health applications, for instance, can currently be supported by the bandwidth available on today's Internet. Bandwidth is particularly important in a number of biomedical research applications, especially in the rendering of three-dimensional images of biomedical structures. It could also be important in professional education, where it would support a virtual reality system for simulated surgeries and other forms of training.break

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Page 124 Latency Certain highly specialized health applications, such as remote control of experimental equipment or simulation of surgical procedures for educational purposes, require much lower latency than is available on today's Internet. However, many other health care applications, such as searching for information on the Internet, do not require instantaneous delivery of information and therefore will not be adversely affected even by the latency of today's Internet. Availability Because health care can be a life-and-death matter, the availability of many Internet applications related to its provision and the network across which these applications run is paramount. If time-critical information is not available for decision making because data have been lost in transfer, then the safety and quality of patient care can be compromised. Although some health care applications might have lower requirements for network reliability, the most demanding applications still require a higher level of availability than most consumer applications. If health care organizations are to use the Internet for important patient care tasks—whether retrieving medical records, accessing decision support tools, or conducting telemedicine sessions—they need to know that the network will be available a large percentage of the time. Security Because of the highly personal nature of health information and the detrimental effects inappropriate releases of such information could have on social standing, insurance eligibility, and employment, the level of protection required for some health information is extremely high. Such protection must be afforded by security protocols embedded in the relevant applications and in the computers connected to the Internet, as well as in the network itself. It will be as much a matter of the rules governing appropriate releases of information as it will be of technical security mechanisms, such as encryption. Equally or perhaps more important from a quality-of-care standpoint is the need to protect the integrity of data and software and the availability of critical services. Ubiquity The continuing trend toward patient empowerment is being fueled by the greater access of patients to general and personal health informa-soft

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Page 125 tion. The Internet is already playing a large role in improving access to this information, but unfortunately not all Americans are able to benefit. Socioeconomic status and geographic location are still strong determinants of whether a person has access to the Internet. If it is a societal goal to give all persons access to Internet-based health care information and services, then near-ubiquitous access to the Internet will be required. Use of the Internet in support of health care financial and administrative transactions, public health, professional health education, and biomedical research presents a number of technical challenges that rival those presented by the provision of health care (Table 2.7). Security is of utmost concern in financial and administrative uses, as well as in public health, both of which require access to health records containing patient-specific information. Availability is, in general, of lesser concern than in other health care applications of the Internet, if only because human life is not immediately at stake. Nevertheless, financial and administrative transactions, public health, and biomedical research all require high degrees of system availability—especially public health, where the network would have to continue to function even in the wake of a large-scale disaster. Ubiquity is important in all these applications, although fewer people would need access to the Internet for non-care-related activities than for those directly related to health care. Beyond these demands for technical capabilities, applications of the Internet in health care financial and administrative transactions, public health, professional education, and biomedical research demand attention to a number of organizational and policy issues. Most importantly,continue TABLE 2.7 Relative Importance of Technical Needs of the Internet by Health-Related Applications Application Bandwidth Latency Availability Security Ubiquity Consumer health ++ + ++ ++++ ++++ Clinical care ++++ +++ ++++ ++++ ++ Financial and administrative transactions + + +++ ++++ ++ Public health + + +++ +++ ++ Professional education +++ ++ ++ + +++ Biomedical research ++++ +++ ++ ++ ++ NOTE: Plus signs (+) denote the relative importance of the technical feature within the designated application area. The scale ranges from a single plus sign, which denotes minimal importance, to four plus signs, signifying great importance.

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Page 126 organizations engaged in these health-related activities need to recognize the value of the Internet for their missions. Second, they need to develop standards for information exchange, identifying the data elements of importance and agreeing on a standardized vocabulary for describing data and a standardized format for exchanging data. Third, organizations will need to ensure equitable access to Internet resources. This issue may be of greatest importance in the educational arena, where schools have begun to mandate the purchase of laptops by students but have found that some students lack high-bandwidth connectivity from their homes or off-campus work locations. These issues are explored in greater detail in Chapters 4 and 5 of this report. References Affiliated Health Information Networks of New England. 1999. Leading the Way to Health Information Exchange in the Electronic World. Massachusetts Health Data Consortium, Waltham, Mass., April. American Medical Association (AMA). 1996. Continuing Medical Education Directory. AMA, Chicago, Ill. Baker, D.B. 1998. "PCASSO: Providing Secure Internet Access to Patient Information," SAIC Science and Technology Trends II. Science Applications International Corporation, San Diego, Calif. Biermann, J. Sybil, G.J. Golladay, M.L. Greenfield, and L.H. Baker. 1999. "Evaluation of Cancer Information on the Internet," Cancer 86(3):381-390, August 1. Boodman, Sandra G. 1999. "Medical Web Sites Can Steer You Wrong," Washington Post, August 10, Health Section, p. 7. Burton, Thomas M. 2000. "Medtronic to Join Microsoft, IBM in Patient-Monitoring Venture," Wall Street Journal, January 24, p. B12. Carns, Ann. 1999. "www.doctorsmedicinesdiseasesgalore.com": Today's Cybercraze Is Any Web Site Devoted to Health or Maladies," Wall Street Journal, June 10, p. B1. Centers for Disease Control and Prevention (CDC). 1998. Strengthening Community Health Protection Through Technology and Training: The Health Alert Network. CDC, Atlanta, Ga. Chand, G., B.C. Breton, N.H.M. Caldwell, and D.M. Holburn. 1997. "World Wide Web-Controlled Scanning Electron Microscope," Scanning 19:292-296. Computer Science and Telecommunications Board (CSTB), National Research Council. 1997. For the Record: Protecting Electronic Health Information. National Academy Press, Washington, D.C. CyberAtlas. 1999. "Online Healthcare Market Looks Energized." Available online at <http://cyberatlas.internet.com/big-picture/demographics/article/0,1323,6061_153701,00.html>. Davis D.A., M.A. Thomson, A.D. Oxman, and R.B. Haynes. 1995. "Changing Physician Performance: A Systematic Review of the Effect of Continuing Medical Education Strategies," Journal of the American Medical Association 274(September 6):700-705. Dolin, R.H., W. Rishel, P.V. Biron, J. Spinosa, and J.E. Mattison. 1998. "SGML and XML as Interchange Formats for HL7 messages," pp. 720-724 in Proceedings of the AMIA Symposium, Bethesda, Md.break

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Page 127 Fridsma, D.B., P. Ford, and R. Altman. 1994. "A Survey of Patient Access to Electronic Mail: Attitudes, Barriers, and Opportunities," Paper presented at Eighteenth Annual Symposium on Computer Applications in Medical Care, Washington, D.C., October 15-19. See <http://smi-web.standord.edu/pubs/SMI_Abstracts/SMI-94-0524.html>. Goedert, Joseph, 1999. "Electronic Claims Growth Sputters," Health Data Management (September):84-86. Harman, J. 1998. "Topics for Our Times: New Health Care Data—New Horizons for Public Health," American Journal of Public Health 88:1019-1021. Health Care Financing Administration (HCFA). 1999a. HCFA Information System Security Bulletin Handbook, Bulletin 98-01, Baltimore, Md., January. Health Care Financing Administration (HCFA). 1999b. "Telecommunications Requirements: Migration of Medicare Managed Care Organizations (MCO) to the Medicare Data Communications Network and the Replacement of the RLINK Software," Operational Policy Letter No. 92 OPL99.092, U.S. Department of Health and Human Services, May 6. Available online at <http://www.hcfa/gov/medicare/op1092.htm>. Hripcsak, G., P.D. Clayton, T.A. Pryor, P. Haug, O.B. Wigertz, and J. Van der Lei. 1990. "The Arden Syntax for Medical Logic Modules," pp. 200-204 in Proceedings of the Symposium on Computer Applications in Medical Care, R.A. Miller, ed. IEEE Computer Society Press, Los Alamitos, Calif. Huang, H.K. 1996. "Teleradiology Technologies and Some Service Models," Computerized Medical Imaging and Graphics 20(2):59-68. Huang, H.K. 1999. PACS: Basic Principles and Applications. Wiley-Liss, New York. Institute of Medicine (IOM), Committee on the Quality of Health Care in America. 1999. To Err Is Human, Linda Kohn, Janet Corrigan, and Marla Donaldson, eds. National Academy Press, Washington, D.C. Kohane, I.S., P. Greenspun, J. Fackler, C. Cimino, and P. Szolovits. 1996. "Building National Electronic Medical Record Systems via the World Wide Web," Journal of the American Medical Informatics Association 3(3):191-207. Lasker, R.D. 1998. "Challenges to Accessing Useful Information in Health Policy and Public Health: An Introduction to a National Forum Held at the New York Academy of Medicine," Journal of Urban Health: Bulletin of the New York Academy of Medicine 75(4):779-784. Lou, S.L., Edward A. Sickles, H.K. Huang, David Hoogstrate, Fei Cao, Jun Wang, and Mohammad Jahangiri. 1997. "Full-field Direct Digital Telemammography: Technical Components, Study Protocols, and Preliminary Results," IEEE Transactions on Information Technology in Biomedicine 1(4):270-278. Mandl, Kenneth D., Isaac Kohane, and Allan M. Brandt. 1998. "Electronic Patient-Physician Communication: Problems and Promise," Annals of Internal Medicine 129:495-500. McCormack, John. 2000. "Group Practices Find Their Way to the Internet," Health Data Management 8(1):46-53. McGinnis, J.M., and W.H. Foege. 1993. "Actual Causes of Death in the United States," Journal of the American Medical Association 270:2207-2212. Nash, Sharon. 1999. "The Doctor Is Online," PC Magazine Online, July 14. Resnick, Paul. 1997. "Filtering Information on the Internet," Scientific American (March):106-108. Reuters New Service. 1999. "Internet Could Organize Medical Records," July 27. Rind, D.M., I.S. Kohane, P. Szolovits, C. Safran, H.C. Chueh, and G.O. Barnett. 1997. "Maintaining the Confidentiality of Medical Records Shared over the Internet and World Wide Web," Annals of Internal Medicine 127(2):138-141. Rybowski, Lise, and Richard Rubin. 1998. Building an Infrastructure for Community Health Information: Lessons from the Frontier. Foundation for Health Care Quality, Seattle.break

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Page 128 Science Applications International Corporation (SAIC). 1998. Security and Risk Management for Business-to-Business Health Information Networks, Final Report, Three State Health Information Planning Project. SAIC, San Diego, Calif., June. Science Panel on Interactive Communication and Health (SCIPICH). 1999. Wired for Health and Well-Being: The Emergence of Interactive Health Communication, Thomas R. Eng and David H. Gustafson, eds. Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services, Washington, D.C., April. Available online at <http://www.scipich.org>. USA Today. 1998. "Health-Related Activities Conducted Online," July 10. U.S. Department of Health and Human Services. 1998. Healthy People 2010 Objectives. Draft for public comment, September 15, U.S. Department of Health and Human Services, Washington, D.C. Available online at <http://web.health.gov/healthypeople>. U.S. Public Health Service, Public Health Data Policy Coordinating Committee. 1995. Making a Powerful Connection: The Health of the Public and the National Information Infrastructure. July 6. Available online at <http://www.nlm.nih.gov/pubs/staffpubs/lo/makingpd.html>. Varmus, Harold, David Lipman, and Pat Brown. 1999. "E-BIOMED: A Proposal for Electronic Publications in the Biomedical Sciences," memorandum dated May 5. Available online at <http://www.nih.gov/welcome/director/pubmedcentral/ebiomedarch.htm>. Wolf, Guenter, Detlev Petersen, Manfred Dietel, and Ever Petersen. 1998. "Telemicroscopy via the Internet," Nature 391 (February 5):613-614. World Wide Web Consortium. 1998. "Extensible Markup Language (XML) 1.0. W3C Recommendation," Report No. REC-xml-19980210, February. Notes 1. A search using Alta Vista on July 29, 1999, returned 40,156 Web pages in response to the query "diabetes mellitus." 2. For an example of the criteria according to which health-related Web sites can be evaluated, see <http://hitiweb.mitretek.org/iq/onlycriteria.html>. 3. Information on PICS is available online at <http://www.w3.org/PICS/>. See also Resnick (1997). 4. For example, a company named PersonalMD.com had stored the health records of 10,000 subscribers online free of charge as of July 1999. The company sends consumers a card with a personal access code that allows them to retrieve their records over the Internet or by a fax-back system (Reuters News Service, 1999). Another group, the Medical Registry, charges $100 to retain medical information online, allowing customers to update it as often as they wish. 5. The Medical Registry, which was started by emergency room physicians, allows doctors to access a patient's record during an emergency by entering their Drug Enforcement Act number. Patients are issued a wallet card and alert bracelet containing the address of the Web site, the patient's password, and the phone number of a fax-back service that can access and download the patient's records. 6. For more information on PCASSO, see Baker (1998). 7. The National Heart Attack Alert Program is a federal effort that may lead to improved techniques for remotely monitoring patients. The program has the overall goals of, first, reducing morbidity and mortality from acute myocardial infarctions (heart attacks) through rapid identification and treatment and, second, heightening the potential for an improved quality of life for patients and family members. Remote monitoring and collec-soft

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Page 129 tion of patient vital signs is seen as one possible avenue for early detection of heart attacks and for getting patients into the health care system quickly. Information about the program is available online at <http://www.nhlbi.nih.gov/about/nhaap/nhaap_pd.htm>. 8. Data from Michael Kiensle, associate dean for Clinical Affairs and BioMedical Communications, University of Iowa College of Medicine, personal communication, July 12, 1999. 9. In-home monitoring with a video link offers benefits to patients, but not for diagnostic reasons. As one reviewer of an early draft of this report noted, the patient needs to see the care provider to address the problem of noncompliance, which often results when patients misunderstand instructions and take medications at the wrong time, in the wrong dosage, and so on. The way to improve compliance is to ensure that the care provider captures the attention of the patient while delivering instructions. Video can help ensure this happens. 10. At present, teleconsultations conducted across networks that use the IP require approximately twice the bandwidth of traditional point-to-point networks. The reasons are twofold: (1) Internet protocols impose some additional overhead functions that require bandwidth and (2) the devices used to encode video streams into IP packets (coder/decoders, or codecs) are much less efficient than their non-IP counterparts. But IP codecs are less expensive, in part because they carry less hardware compression, and next-generation IP codecs are expected to provide better performance and impose less of a penalty on IP-based systems. 11. East Carolina University recently received a grant from the National Library of Medicine to investigate these requirements. 12. Pending further study of the medical efficacy of higher bandwidth for teleconsultations, an upper limit on bandwidth for video consultations can be estimated by considering the need for broadcast quality video. A video display with 640 × 480 pixels that is refreshed 30 times per second and has 24-bit color demands 221 Mbps. With standard compression technologies, such as that of the Motion Picture Experts Group (MPEG), reductions of 90 to 1 are common, resulting in a need for 2.5 Mbps. Improved coding may lower this figure further. For transmission quality equal to high-definition television, which is just entering consumer production, 19 Mbps would be required. These figures represent the maximum bandwidth that remote video consultations could be expected to use, but, as the evidence collected by ECU and other practitioners indicates, much less bandwidth is sufficient in many applications. 13. Information on the National Laboratory for the Study of Rural Telemedicine at the University of Iowa is available online at <http://telemed.medicine.uiowa.edu/index.html>. 14. Anthony Chou, University of California at San Francisco, presentation to the committee, December 16, 1998. 15. As described later in this chapter, attempts are being made to make these specialized instruments available to a larger number of researchers through the Internet. 16. Stentor, Inc., has developed a system that can provide high-resolution images over lower-bandwidth networks by providing only portions of the overall image at any one time. 17. In addition to the lack of standardization of medical data models, there has been no widespread adoption of portable decision-support tools, despite the efforts of many in projects such as the development of the Arden syntax (see Hripcsak et al., 1990). The absence of sound, widely accepted automated decision-support tools that are integrated with each other and with Internet health transactions will undermine the capabilities of such tools to achieve the desired goal of medical error reduction. For example, if one set of Internet transactions attempts to optimize for medication orders and another set of Internet transactions attempts to optimize the ordering of procedures, several possibly dangerouscontinue

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Page 130 and/or expensive interactions between the two might occur. In a tightly integrated system, as compared to disparate and separate Internet-based systems, such interactions might be minimized. This situation suggests that a near-term challenge will be to ensure quality control and coordination among the many different Internet-born clinical transactions and to develop robust medical decision-support tools that can serve a wide range of institutions and patient populations. 18. In a survey of 153 chief information officers conducted by the College of Health Information Management Executives in 1998, 80 percent said they use HL7 and 13.5 percent planned to implement it in the future. 19. All claims data in this paragraph derive from research conducted for Faulkner & Gray's 2000 Health Data Directory, as cited in Goedert (1999). 20. For additional information on these efforts, see Rybowski and Rubin (1998) and Affiliated Health Information Networks of New England (1999). 21. Further information on HCFA's pilot program can be obtained from either <http://www.wedi.org> or <http://www.afecht.org>. 22. For example, the U.S. Public Health Service released a report in 1995 describing the potential applications of the Internet in public health and identifying technical challenges to be addressed (U.S. Public Health Service, 1995). In 1997, the New York Academy of Medicine and the National Library of Medicine cosponsored a symposium on public health informatics that called for improved structures and assessment mechanisms for public health information (Lasker, 1998). Slide presentations of several symposium speakers are available at <http://www.nlm.nih.gov/nichsr/nyam/nyam.html>. The Department of Health and Human Services' document Healthy People 2010 (U.S. Department of Health and Human Services, 1998) includes a section on objectives for improving the public health infrastructure. They include widespread access to the Internet and real-time, on-site access to public health data for public health workers and individuals. Section 14, objectives 5 and 6, is the most relevant example. 23. Participating organizations include the National Network of Libraries of Medicine, the Centers for Disease Control and Prevention, the Health Resources and Services Administration, the Association of State and Territorial Health Officials, and the National Association of County and City Health Officials. 24. Reports from physicians' offices and hospitals also tend to be reported on paper. 25. Jac Davies, Washington State Department of Health, presentation to the study committee, February 11, 1999, Seattle, Washington. 26. The traditional public health functions are surveillance, case identification, treatment, prevention, research, guidelines, education and feedback. 27. President Clinton's proposal for this program would also create a network of regional labs to provide rapid analysis and identification of select biological agents. 28. The Health Alert Network is part of a larger antibioterrorism effort that received $158 million in FY99. Another $72 million was proposed for FY2000, which would raise the total to $230 million. 29. This information is derived from "Health Alert Network Architectural Standards," supplement to the Centers for Disease Control and Prevention Program Announcement No. 99051. 30. The Association of American Medical Colleges reports that total enrollment in full-time undergraduate medical programs in the United States was 66,900 in the 1997-1998 academic year. There were 99,099 residents being trained in clinical settings (primarily teaching hospitals). According to the quinquennial survey, approximately 242,000 students were enrolled in all health sciences programs during the 1996-1997 academic year. 31. The SHINE project at Stanford Medical Center is experimenting with providing CMEcontinue

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Page 131 credit to physicians who request point-of-care information during patient interactions. Information on this program is available online at <http://shine.stanford.edu>. 32. These figures were provided by Dennis Benson at the National Library of Medicine in a personal communication dated February 11, 2000. 33. There have been laboratories whose access to NCBI/PubMed was suspended temporarily when usage rates climbed too high. One lab at Stanford lost access after a graduate student wrote programs that were downloading 3,000 abstracts per minute from the Web site. The scientific goals of this student were meritorious, but the resource was not built to sustain this use (Russ Altman, Stanford University, personal communication, December 22, 1999). 34. James Ostell, National Center for Biotechnology Information, presentation to the study committee on March 1, 1999, Washington, D.C. 35. Researchers at the University of Cambridge, the University of California at San Diego (see Box 2.4), and the University Hospital Charité in Berlin have all developed Internet-based systems for controlling experimental apparatus (Chand et al., 1997). 36. Electron tomography is a technique whereby three-dimensional structure is derived from a series of two-dimensional projections using advanced image processing steps. In the most common form, the specimen is tilted around a single axis and imaged at regular intervals. The IVEM at NCMIR is one of a few such instruments in the United States made available to the biological research community. Support for NCMIR is provided by the National Center for Research Resources (NCRR) of the National Institutes of Health (NIH). 37. This information is taken from a paper entitled ''NCMIR's Collaboratory for Microscopic Digital Anatomy: A National Science Foundation National Challenge Project," which is available online at <www-ncmir.ucsd.edu/CMDA/>. 38. CMDA has already been used by researchers at Montana State University to collect data on synaptic organization in the sensory ganglia of the insect nervous system and by scientists at the University of Oregon studying neurotransmission (synaptic vesicle release) in vestibular hair cell synapses. Other users are studying the abnormalities in nerve cells in Alzheimer's disease, the structural relationships of protein molecules responding to calcium within nerve cells, and the three-dimensional pattern of branching of the dendrites in neurons that create a highly linked network of cellular communication. 39. In the longer term, it is hoped that digital video standards will give good resolution and smooth motion at 30 frames per second at much lower bandwidth. 40. More information on SRS is available at <http://srs.ebi.ac.uk:5000/>. Information on Biokleisli is available at <http://smi-web.stanford.edu/projects/helix/mis214/bdkowvldb95.pdf> (a paper). Information on KEGG is available at <http://www.genome.ad.jp/dbget/dbget.links.html>. 41. Clinical research lies at the juncture of clinical care, biomedical research, and public health but is somewhat distinct from each of these topics. It is described in the section on biomedical research in this report for reasons of editorial convenience and exposition.break