Consumer Health Informatics and Telehealth

Home , Health informatics, Remote surgery, Telehealth, Teleophthalmology

14 Consumer Health Informatics and Telehealth

PATRICIA FLATLEY BRENNAN AND JUSTIN B. STARREN

After reading this chapter you should know the answers to these questions:

● What factors contribute to the increasing pressure for lay people to actively participate in health care? ● How does direct access to health information technologies assist patients in participating in their own health care? ● Critically appraise the informatics requirements for successful telehealth. ● How can lay people determine the value of a telehealth innovation such as a health- related Web site or an on-line disease management service?

14.1 Introduction

Complexity and collaboration characterize health care in the early 21st century. Complexity arises from increasing sophistication in the understanding of health and disease, wherein etiological models must take into account both molecular processes and physical environments. Collaboration reflects not only inter-professional collaboration, but also a realization that successful attainment of optimal well-being and effective management of disease processes necessitate active engagement of clinicians, lay persons, concerned family members, and society as a whole. This chapter introduces the concepts of telemedicine, telehealth, and consumer health informatics (CHI) and illustrates how maturing computer networks like the Internet make possible the collaborations necessary to achieve the full benefits of our growing understanding of health promotion, disease management and disability prevention. Consider the following situation:

Jeffery is an 18-year old high school senior, who is newly diagnosed with Type I diabetes following an acute hyperglycemic episode which required hospitalization. After four days he is medically stable and ready for discharge. He is able to measure his blood glucose and can safely administer the appropriate dose of insulin. The nurse notes that Jeffery sometimes has trouble calibrating the insulin dose to the blood glucose reading. She also notes that his father is short and impatient with Jeffery, expressing many concerns that Jeffery “may not be able to handle such a complex medical problem on his own”.

511 512 P. F. Brennan and J. B. Starren

14.1.1 Telemedicine, Telehealth and Reducing the Distance Between the Consumer and the Healthcare System? Warner Slack calls the patient “the most underused resource in the health care delivery system.” Telehealth and telemedicine approaches have the ability to bring professionals and patients closer together, and CHI innovations insure that the patient has access to the information resources necessary for them to participate fully in the health care process. Historically, health care has usually involved travel. Either the health care provider traveled to visit the patient, or more recently, the patient traveled to visit the provider. Diabetic patients, like Jeffery, typically meet with their physician every two to six months to review data and plan therapy changes. Travel has costs, both directly, in terms of gasoline or transportation tickets, and indirectly, in terms of travel time, delayed treatment, and lost productivity. In fact, travel has accounted for a significant propor- tion of the total cost of healthcare. (Starr, 1983) Because of this, both patients and providers have been quick to recognize that rapid electronic communications have the potential to improve care by reducing the costs and delays associated with travel. This has involved both access to information resources, as well as direct communication among various participants, including patients, family members, primary care providers and specialists. As is the case with informatics, the formal definitions of telemedicine and telehealth tend to be very broad. One widely circulated definition is:

Telemedicine involves the use of modern information technology, especially two-way interactive audio/video communications, computers and telemetry to deliver health services to remote patients and to facilitate information exchange between primary care physicians and specialists at some distance from each other. (Bashshur, et al., 1997).

It is clear from the definition above that there is considerable overlap between telemedicine and biomedical informatics. In fact, one will frequently find papers on telemedicine systems presented at biomedical informatics conferences and presentations on informatics at telemedicine meetings. The major distinction is one of emphasis. Telemedicine emphasizes the distance, especially the provision of care to remote or iso- lated patients and communities. In contrast, biomedical informatics emphasizes meth- ods for handling the information, irrespective of the distance between patient and provider. A question that frequently arises in any discussion of this topic is the distinction between telemedicine and telehealth. Although not formalized, a frequent distinction between the two terms is that telemedicine is an older and a narrower term, connoting communication between two persons. Telemedicine is often associated with video-conferencing between patients and providers. In contrast, telehealth is a newer and broader term that has been used to include both traditional telemedicine as well as interactions with automated systems or information resources. Because of its broader scope, we are using the term telehealth in this chapter. Another topic of discussion is whether consumer-health informatics (CHI) is a sub-domain of telehealth or whether they are two separate domains. This question lacks a simple answer. As can be seen in Figure 14.1, both CHI and telehealth are ways to bridge the distance between patients Consumer Health Informatics and Telehealth 513

Figure 14.1. Connections. The figure shows different ways that electronic communications can be used to link patients with various health resources. Only connections directly involving the patient are shown (e.g., use of the EHR by the clinician is not shown). Some of the resources, such as Web sites or telehome care, can be accessed from the patient’s home. Other resources, such as remote surgery or imaging, would require the patient to go to a telehealth-equipped clinical facility.

and necessary health resources. Those resources could involve interaction with specific persons, such as physicians, nurses or other patients. They could also involve interactions with computerized information, such as Web sites, or with expert knowledge, such as the remote interpretation of a images. Collectively, CHI and telehealth transport healthcare knowledge and expertise to where they are needed, and are ways to involve the patient as an active partner in care. In spite of their similarities, CHI and telehealth come from very different historical foundations. Telehealth derived from traditional patient care, while CHI derived from the self-help movements of the 1970’s. (See Section 14.2) Largely owing to this historical separation, practitioners and researchers in the two fields tend to come from different backgrounds. For these reasons, we are presenting CHI and telehealth as two distinct, but closely related domains with central ties to biomedical informatics.

14.1.2 Consumerism, Self-Help, and Consumer Health Informatics Contemporary consumers experience greater demands to participate in their own care than have patients at any time since the emergence of modern health care. Patient participation takes many forms: shared decision-making, self-care, and collaborative practices. In essence, it reflects a shift from the patient as the silent recipient of 514 P. F. Brennan and J. B. Starren ministrations from a wise, beneficent clinician to an active collaborator whose values, preferences, and lifestyle not only alter predisposition to certain illnesses but also shape the characteristics of desirable treatments. The legacy of the self-help movement of the 1970s and the consumerism of the 1980s is growth in the importance of the patient as a full participant in health care. Patients participate by self-monitoring, by evaluating and choosing therapeutic strategies from a set of acceptable alternatives, by implementing the therapies, and by evaluating the effects. Recent social and clinical changes in the manner in which care is provided shift clinical-practice activities that were once the purview of licensed professionals to patients and their family caregivers. The failure of 50 years of bioscience research to produce definitive clinical remedies for more than a handful of disease states requires that medical science be tempered with patient preferences (e.g., between surgical and radiation therapies). Furthermore, there is growing belief that behavioral interventions and alternative therapies hold great promise as adjuncts, or even replacements, for traditional medical therapies. These trends contribute to a contemporary healthcare environment that is more diffuse and involves more people than ever before. The home and the community are fast becoming the most common sites where health care is provided. Information technologies necessary to support patients and their family caregivers must not only migrate from the inpatient institution to the community but also be populated with information resources that help to guide patients in complex healthcare decision-making, to communicate with health professionals and to access the clinical records and health science knowledge necessary to help them comprehend their health states and participate in appropriate treatments. The role of the consumer as a full partner in health promotion and disease management has never been more necessary than now. In the distributed-managed-care models of health care, consumers serve as their own case managers, brokering care from generalists, specialists, and ancillary groups. Rarely do consumers receive all of their needed clinical services from a single provider. Informatics tools, such as the electronic health record,provide an integrated record and communication service. Consumers require access to this record so that they can contribute timely observations, monitor their own progress toward health, and comprehend the plethora of clinical interventions available to them. The development of inexpensive, reliable computers and telecommunications technology enables healthcare providers, payers, patients, and the general public to access health information and healthcare resources directly from their homes and from public gathering places, such as libraries, schools, and workplaces. Through computer networks, telephone messaging services, and other initiatives, clinicians have a unique opportunity to reach patients and clients with health-promotion, disease-prevention, and illness-management clinical interventions. Telecommunications-based health services also pose unique challenges to modify existing clinical interventions and to devise new ones to take appropriate advantage of the electronic environment.

14.2 Historical Perspectives

The use of communication technology to convey health-related information at a distance is nothing new. The earliest known example may be the use of so-called “leper Consumer Health Informatics and Telehealth 515 bells” carried by individuals during Roman times. Sailing ships would fly a yellow flag to indicate a ship was under quarantine and awaiting clearance by a doctor, or a yellow and black “plague flag” to indicate that infected individuals were on board. By some accounts, when Alexander Graham Bell said “Mr. Watson. Come here. I need you” in 1876, it was because he had spilled acid on his hand and needed medical assistance. In 1879, only three years later, the first description of telephone use for clinical diagnosis appeared in a medical journal. (Practice by Telephone, 1879)

14.2.1 Early Experiences One of the earliest and most long-lived telehealth projects is the Australian Royal Flying Doctor Service (RFDS), founded in 1928. In addition to providing air ambulance services, the RFDS provides telehealth consultations. These consultations first used Morse Code, and later voice, radio communications to the remote sheep stations in the Australian outback. Lay people played a significant role here, clearly communicating their concerns and clinical findings to the RFDS and carefully carrying out instructions while awaiting, if necessary, the arrival of the physician. The RFDS is most famous for its standardized medical chest, introduced in 1942. The chest contains diagnostic charts and medications, identified only by number. This allowed the consulting clinician to localize symptoms by number and then prescribe care, such as “take one number five and two number fours.” Modern telehealth can be traced to 1948 when the first transmission of a radiograph over a phone line was reported. Video-based telehealth can be traced to 1955 when the Nebraska Psychiatric Institute began experimenting with a closed-curcuit video network on its campus. In 1964 this was extended to a remote state mental health facility to support education and teleconsultation. In 1967, Massachusetts General Hospital (MGH) was linked to Logan International Airport via a microwave video link. In 1971 the National Library of Medicine began the Alaska Satellite Biomedical Demonstration project linking 26 remote Alaskan villages utilizing NASA satellites. The period from the mid 1970’s to the late 1980’s was a time of much experimenta- tion, but few fundamental changes in telehealth. A variety of pilot projects demonstrated the feasibility and utility of video-based telehealth. The military funded a number of research projects aimed at developing tools for providing telehealth care on the battlefield. The early 1990’s saw several important advances. Military applications developed during the previous decades began to be deployed. Military teleradiology was first deployed in 1991 during Operation Desert Storm. Telehealth in military field hospitals was first deployed in 1993 in Bosnia. Several states, including Georgia, Kansas, North Carolina and Iowa implemented statewide telehealth networks. Some of these were pure video networks, based on broadcast television technology. Others were built using evolv- ing Internet technology. During this same period, correctional telehealth became much more common. For example, in 1992 East Carolina University contracted with the largest maximum-security prison in North Carolina to provide telehealth consultation. Telehealth projects in the early 1990s continued to be plagued by two problems that had hampered telehealth since its inception: high cost and poor image quality. Both hardware and high-bandwidth connections were prohibitively expensive. A single telehealth 516 P. F. Brennan and J. B. Starren station typically cost over $50,000 and connectivity could cost thousands of dollars per month. Most programs were dependent on external grant funding for survival. Even with this, image resolution was frequently poor and motion artifacts were severe. The Internet revolution of the late 1990s drove fundamental change in telehealth. Advances in computing power both improved image quality and reduced hardware costs to the point that, by 2000, comparable systems cost less than a tenth of what they had a decade earlier. Improvements in image compression made it possible to transmit low-resolution, full-motion video over standard telephone lines, enabling the growth of telehome care. With the increasing popularity of the World Wide Web, high-bandwidth connections became both more available and less expensive. Many telehealth applications that had relied on expensive, dedicated, point-to-point connections were converted to utilize commodity Internet connections. The availability of affordable hardware and connectivity also made access to health-related electronic resources from the home, school or work place possible and fueled the growth of CHI.

14.2.2 Engaging Consumers in Health Care Patients, family members and the general public have long-played an active role in health care, and have actively sought information from health professionals and government agencies. During the early 20th century, the US Federal Children’s Bureau served as a major source of health information for the public. Mothers could write to this federal agency, asking questions about normal child development, nutrition, and disease management. Written materials, such as letters and pamphlets served as the primary mechanism for delivering information that supported lay people in their handling of health challenges. Broadcast and reproduction media, including television, videotapes and audiotapes, were quickly harnessed by health professionals as a means for presenting complex information and health care instructions to people in their homes. Computers and telecommunications have been used since the early 1940’s for patient assessment, patient education, and clinical information sharing. Morris Collen and colleagues at Kaiser Permanente created a health appraisal system that prompted for patient data and returned a systematic risk appraisal. Slack and colleagues at the University of Wisconsin used a mainframe computer system as a health assessment tool. Patients sat at a cathode ray tube (CRT) terminal and responded to text questions, receiving a printed summary of their health appraisal at the end of the session. At MGH in the late 1950’s, computer-driven telephone systems were used to conduct home-based follow-up with post-surgery cardiac patients, calling them daily to obtain pulse readings. In the1980’s clinicians and health educators capitalized on the increasingly common personal computers as vehicles for health education. Initially, computers were used primarily for computer-assisted learning programs, providing general coaching regard- ing topics such as nutrition and home care of the elderly. The Body Awareness Resource Network (BARN), developed in the 1980’s by Gustafson and colleagues at the University of Wisconsin, engaged adolescents in game-type interaction to help them learn about growth and development, develop healthy attitudes towards avoid- Consumer Health Informatics and Telehealth 517 ance of risky behaviors, and rehearse strategies for negotiating the complex interper- sonal world of adolescents. Later developments in the 1980’s and 1990’s moved beyond computer aided learning to values clarification and risk appraisal exercises, thus capitalizing on the computational power as well as the visual display capabilities of the computer. Social trends, coupled with the introduction of managed care and the rapid growth of computer tools, networks, and multimedia, led to both an explosion of need for healthcare information by the lay public and a dramatic rise in the use of information technology to meet that need. Lay persons need information about health promotion, illness prevention, and disease management. Special computer programs, health-focused CD- ROMs, and health-related, Internet-based World Wide Web sites all provide information likely to be useful to the lay public in participating in health care. Browsers linked to the World Wide Web allow consumers to access their health records and communicate with health care providers in a secure fashion. Labeled consumer-health informatics (CHI), these applications of medical informatics technologies to health care focuses on the patient as the primary user.

14.3 Bridging Distance with Informatics: Real-world Systems

There are many ways to categorize CHI and telehealth resources, including classifica- tions based on participants, bandwidth, information transmitted, medical specialty, immediacy, health care condition, and financial reimbursement. The categorization in Table 14.1 is based loosely on bandwidth and overall complexity. This categorization was chosen because each category presents different challenges for informatics researchers and practitioners. A second categorization of telehealth systems that overlaps the previous one is the separation into synchronous (or real-time) and asynchronous (or store-and-forward

Table 14.1. Categories of telehealth and consumer health informatics. Telehealth category Bandwidth Applications Information Resources Low to moderate Web-based information resources, patient access to electronic medical records Messaging Low E-mail, chat groups, consumer health networks, personal clinical electronic communications (PCEC) Telephone Low Scheduling, triage Remote monitoring Low to moderate Remote monitoring of pacemakers, diabetes, asthma, hypertension, CHF. Remote interpretation Moderate PACS, remote interpretation of radiographic studies and other images, such as dermatologic and retinal photographs. Videoconferencing Low to high Wide range of applications, from low-bandwidth telehome care over telephone lines, to high-bandwidth telementoring and telepsychiatry Telepresence High Remote Surgery, telerobotics CHF = Congestive Heart Failure. 518 P. F. Brennan and J. B. Starren systems). Video conferencing is the archetypal synchronous telehealth application. Synchronous telehealth encounters are analogous to conventional office visits. Telephony, chat-groups, and telepresence are also examples of synchronous telehealth. A major challenge in all synchronous telehealth is scheduling. All participants must be at the necessary equipment at the same time. Store-and-forward, as the name implies, involves the preparation of a dataset at one site that is sent asynchronously to a remote recipient. Remote interpretation, especially teleradiology, is the archetypal example of store-and-forward telehealth. Images are obtained at one site and then sent, sometimes over very low bandwidth connections, to another site where the domain expert inter- prets them. Other examples of store-and-forward include access to Web sites, e-mail and text messaging. Some store-and-forward systems support the creation of multimedia “cases” that contain multiple clinical data types, including text, scanned images, wave forms and videos.

14.3.1 Direct Access to Health Information Resources by Consumers

A classmate tells Jeffery – “it’s too bad you have diabetes – you can’t have sex – all guys with diabetes are impotent sooner or later”. Later that night, Jeffery goes on the Internet and tries to find out if his friend’s dire warning is true. Patients like Jeffery need quick, private access to accurate information that can calm fears and ensure direct access to currently accepted treatment for their illness. Existing healthcare delivery systems are woefully inadequate in providing such information to their patients. At best, a busy clinician may be able to take a few minutes to explain terms and likely consequences and perhaps to provide the patient with additional brochures and printed information. Computer technology can supplement clinicians’ teaching with more detailed information that can be referenced repeatedly by a patient in the privacy of his home. Consumer health informatics resources provide substantive and procedural knowledge about health problems and promising interventions (Table 14.2). Information resources developed for consumers vary in content and sophistication. Some of these resources are little more than digitized brochures, presenting in an electronic form exactly what can be found in available printed materials. Others include interactive or multimedia presentations of information about specific conditions and appropriate actions to prevent, cure, or ameliorate the problem. Multimedia presentations capitalize on the features of computer systems to enrich the presentation of health-related materials with pictures, short movies, and drawings. Consumer health informatics resources provide patients with condition-specific and disease-specific information about the problems they face. Some resources explain the etiology and natural history of disease in terms comprehensible to lay people. Other resources provide procedural information, explain diagnostic procedures or services, detail expected treatment activities, and provide any relevant warnings and precautions. The presentation of CHI is heavily influenced by the perspective of the system devel- oper. Medically oriented clinical resources demonstrate an emphasis on locally accepted Consumer Health Informatics and Telehealth 519

Table 14.2. Selected consumer health Web sites on the Internet. Federal resources The U.S. Department of Health and Human Services primary consumer health information resource: http://www.healthfinder.gov/ The National Library of Medicine’s Consumer Resources General Information http://www.nlm.nih.gov/medlineplus/ Clinical Trials Update www.clinicaltrials.gov Genetics Health Information http://ghr.nlm.nih.gov/ Agency for Health Care Policy and Research Consumer Health Guides http://www.ahcpr.gov/consumer/

National resources Statement of the Institute of Medicine on the Electronic Health Record http://www.nap.edu/books/NI000427/html/ ebMD Health Resources (Commercial) http://www.webmd.com/ Regional resources Healthy Wisconsin http://www.healthywisconsin.org/ Mayo Clinic’s Health References: http://www.MayoClinic.com/ Condition or disease-specific information on the Web Nutrition Navigator http://navigator.tufts.edu/ Foot Care http://www.nia.nih.gov/health/agepages/footcare.htm Diabetes http://ndep.nih.gov/get-info/info-control.htm Evaluating health information on the Web: Information Quality Tool (Mitertek, Inc) – an interactive tool for consumers http://hitiweb.mitretek.org/iq/ Guidelines from the University of British Columbia http://www.library.ubc.ca/home/evaluating/Easyprint.html Quality assurance indicators for health-related Web sites URAC, also known as the American Accreditation HealthCare Commission http://www.urac.org/ Health on the Net Foundation: http://www.hon.ch/

medical practice. Community health-oriented resources are more likely to include information relevant to living in the community with a specific disease or condition. Consumer health informatics resources originate from two major perspectives: professional and self-help. Professional-developed CHI resources are those developed by healthcare clinicians and their organizations. Healthcare organizations—such as HMOs, managed-care companies, and group practices—develop information resources as a service to the patient populations that they treat. These resources tend to comple- ment and extend the clinical services offered by the professional group and may be based on a desire to ensure adherence with accepted therapies or to triage and manage access to care for common health problems. Examples include Kaiser Permanente Health Facts, a program designed to help Kaiser members answer questions about common health problems, and the Mayo Health Advisor, a commercially available CD- ROM that any interested person can purchase and use to help manage his health at home. Examples of other commercially available programs that have a professional orientation include Health Wise and Health Desk. Figure 14.2 shows an example of professional-developed CHI resources accessible via the Internet. 520 P. F. Brennan and J. B. Starren

Consumer health informatics resources developed from a self-help perspective com- plement and augment those provided by the formal healthcare delivery system. A self- help perspective is generally more inclusive than a professional perspective. The information may address daily living concerns and lifestyle issues along with, or in place of, content deemed credible by established medical authorities. Many CHI resources represent a combination of professional and self-help perspectives. Web-based resources, such as those provided by the Fred Hutchinson Cancer Research Center, provide pointers to other Web sites that represent professional or self- help perspectives. Commercial vendors, such as HealthGate Data Corporation, provide access via a Web site to professional-developed and self-help–oriented CHI resources for a subscription or transaction-based fee. As the electronic health record (EHR) (Chapter 12) gains acceptance, its relevance to individual patients also grows. Many hospitals and clinics have begun providing direct patient access to the clinical record, allowing individuals to electronically access sections of their records to recall salient instructions or obtain results of tests. Figure 14.3 shows the PatCIS system developed at Columbia University.(Cimino et al., 1998) Critical aspects of security, privacy and accurate identification of patients must be addressed, as well as compliance with government regulations (See Chapter 5.) Additionally, designers must take special care to insure that the language used in presenting personal health data enhances the patient’s understanding of his or her health concerns. Many of these Consumer Health Informatics and Telehealth 521

Figure 14.3. PatCIS screen. The Patient Clinical Information System (PatCIS) allows patients to enter and review data in the Central Data Repository at Columbia University/New York Presbyterian Hospital. In this screen the patient has selected to review a Pap smear result. Definitions of commonly misinterpreted words are automatically generated, along with links to related information. (Source: Cimino et al., 2003.) portals also provide secure messaging systems, allowing patients to communicate concerns about their clinical record to their health care providers.

14.3.2 Consumer Health Networks and Health-Related Messaging Recognizing the concerns expressed in her latest coaching session with Jeffery, the Diabetes Educator believes that giving Jeffery a greater sense of control in his life management may help reduce the fears he currently has. She provides him with a network-equipped PalmPilot that he can use to record his exercise and eating patterns, schedule alarms to remind him to complete blood glucose testing, store the current sliding-scale insulin management plan, and automatically send reports to his care providers for evaluation. After the first two weeks, Jeffery reports that he likes the device, as it helps him remember when to do the testing. He also adds that he’s figured out how to instant-message (IM) with friends using the Palm, and how to download games. The Diabetes Educator sighs, and considers ways to use the Palm to engage Jeffery in more learning and self-management. 522 P. F. Brennan and J. B. Starren

Computer networks not only provide patients with access to information; they provide the additional opportunity for individuals to connect with other people who share similar concerns and with their healthcare providers. Network-based consumer- health services include both specialty and public access networks. Examples of two specialty systems that have been heavily researched are the ComputerLink (Brennan, 1998), a specialized computer network service for homebound patients and their caregivers, and the Comprehensive Health Evaluation and Social Support System (CHESS), which targets the needs of people living with AIDS and women diagnosed with breast cancer (Gustafson et al., 2002). Public access systems include the health- related Usenet discussion groups and the health forums available on CompuServe and America Online. Network-based CHI resources generally provide both static information about health problems and management and specialized health-communications utilities. Some professional-developed CHI resources not only provide information to members of a health plan but also facilitate communication between the patient and the health plan. The Kaiser model allows patients who determine that the health problem they face requires a visit to a clinician to cease the information-resource portion and to activate a communication module that links them to the scheduling desk of their local health clinic, where they can request an appointment to see a clinician. Information resources that reside on the Web generally provide a question-answering service—a utility where interested persons can leave a question to be answered by a professional. Still others support direct electronic mail between patients and clinicians. Some offer discussion groups and chat rooms, where people interested in a specific disease or condition can post and read messages. These discussion areas function as electronic support groups and demonstrate many of the same features found in face-to-face support groups. Professionals participate in these discussions, providing advice or counsel. Patient-to-patient communication services are generally the most actively used aspects, with a ratio of 10 contacts with a communication service for each access to an information service. These communication services offer great opportunity for health professionals to clarify information, to guide people in wellness behavior, and to rec- ommend specific activities for managing existing health conditions. Timely access to staged, tailored informational services may have the greatest positive health benefit (Bass et al., 1998; Brennan et al, 2001). For some users, even infrequent access to information resources has led to improved health outcomes. Because of their convenience and accessibility, it is possible that the network-based services offer timely, private access to information when needed by the individual. It is also possible that the network access, supporting both communication and information access, permits lay people to obtain factual knowledge in the context of peer support. Two weeks later Jeffery’s physician notes a slight but persistent rise in his blood glucose readings. He sends Jeffery a message on the Palm to schedule an appointment and review the medication administration strategy. Later realizing that Jeffery regularly tests his blood but doesn’t always record the insulin dosing, the physician and nurse set up a plan for Jeffery to message them at each dose administration point. They use this messaging to provide reas- surance, encouragement and to insure that the medication is actually being taken. Consumer Health Informatics and Telehealth 523

Text messaging is emerging as a popular mode of communication between patients and providers. It began with patients sending conventional e-mails to physician. The popularity of this grew so rapidly that national guidelines were developed.(Kane & Sands, 1998) However, e-mail has a number of disadvantages for health related messaging: delivery is not guaranteed; security is problematic; e-mail is transient (there was no automatic logging or audit trail); and the messages are completely unstructured. To address these limitations, a variety of Web-based messaging solutions, called Personal Clinical Electronic Communications, have been developed (Sarkar & Starren, 2002). The Medem system, developed in conjunction with eight medical societies, has emerged as the most popular such system. In these systems, patients and providers log onto a secure Web site to send or view messages. Rather than completely unstructured messages, the Web-based systems typically used structured forms and limit messages to specific categories, such as medication refill, appointment request, or second-opinion consultation. Because the messages never leave the Web site, many of the problems associated with conventional e-mail are avoided. Some of these systems are also being inter- faced directly to EHRs to facilitate prescription renewals and reporting of test results to patients.

14.3.3 The Forgotten Telephone Until recently, the telephone was the forgotten component in teleheath. The field of telemedicine and telehealth focused on video and largely ignored the audio-only telehealth. Few studies were done and few articles written. This is paradoxical given that up to 25% of all primary care encounters occur via the telephone. These include triage, case management, results review, consultation, medication adjustment and logistical issues, like scheduling. In part, this can be traced to the fact that telephone consultations are not reimbursed by most insurance carriers. More recently, increased interest in cost control through case management has driven renewed interest in use of audio-only communication between patients and providers. Multiple articles have appeared on the value of telephone follow-up for chronic conditions. Several managed care companies have set up large telephone triage centers. The National Health Service in the UK is investing £90 million per year in NHS Direct, a nation wide telephone information and triage system. With some insurance providers reimbursing for e-mails and text messaging, providers are asking why not reimburse for telephone calls also.

14.3.4 Remote Monitoring Remote monitoring is a subset of telehealth focusing on the capture of clinically relevant data in the patients’ homes or other locations outside of conventional hospitals, clinics or healthcare provider offices, and the subsequent transmission of the data to central locations for review. The conceptual model underlying nearly all remote monitoring is that clinically significant changes in patient condition occur between regularly scheduled visits and that these changes can be detected by measuring physiologic parameters. The care model presumes that, if these changes are detected and treated sooner, the overall condition of the patient will be improved. An important distinction 524 P. F. Brennan and J. B. Starren between remote monitoring and many conventional forms of telemedicine is that remote monitoring focuses on management, rather than on diagnosis. Typically, remote monitoring involves patients who have already been diagnosed with a chronic disease or condition. Remote monitoring is used to track parameters that guide management. Any measurable parameter is a candidate for remote monitoring. The collected data may include continuous data streams or discrete measurements. The collection of discrete measurements is the most common approach. Another important feature of most remote monitoring is that the measurement of the parameter and the transmission of the data are typically separate events. The measurement devices have a memory that can store multiple measurements. The patient will send the data to the caregiver in one of two ways. For many studies, the patient will log onto a server at the central site (either over the Web or by direct dial-up) and then type in the data. Alternately, the patient may connect the measurement device to a personal computer or specialized modem and transfer the readings electronically. A major advantage of direct electronic transfer is that it eliminates problems stemming from manual entry, including falsification, number preference and transcription errors. Virtually any condition that is evaluated by measuring a physiologic parameter is a candidate for remote monitoring. (See Chapter 17 for more on patient monitoring systems.) The parameter most measured in the remote setting is blood glucose for monitoring diabetes. A wide variety of research projects and commercial systems have been developed to monitor patients with diabetes. Patients with asthma can be monitored with peak-flow or full-loop spirometers. Hypertensives can be monitored with automated blood pressure cuffs. Patients with congestive heart failure (CHF) are monitored by measuring daily weights to detect fluid gain. Remote monitoring of pacemaker function has been available for a number of years and has recently been approved for reimbursement. Home coagulation meters have been developed that allows the monitoring of patients on chronic anticoagulation therapy. Several factors limit the widespread use of remote monitoring. First is the question of efficacy. While these systems have proven acceptable to patients and beneficial in small studies, few large-scale controlled trials have been done. Second is the basic question of who will review the data. Research studies have utilized specially trained nurses at centralized offices but it is not clear that this will scale up. Third is money—for most conditions, remote monitoring is still not a reimbursed activity.

14.3.4 Remote Interpretation Remote interpretation is a category of store-and-forward telehealth that involves the capture of images, or other data, at one site and transmission to another site for interpretation. This may include radiographs (teleradiology), photographs (teledermatology, teleophthalmology, telepathology), or wave forms, such as ECGs (telecardiology). By far, teleradiology is the largest category of remote interpretation, and probably the largest category of telehealth. Teleradiololgy and telepathology represent the most mature clinical domains in telehealth. With the deployment of picture arciving and communications systems (PACS) that capture, store, transmit and displays digital radiology images, the line between teleradiology and conventional radiology is blurring. Consumer Health Informatics and Telehealth 525

(Radiology image management is discussed in more detail in Chapter 18.) One factor leading to the more rapid adoption of teleradiology and telepathology is the relation- ship between these specialists and the patients. In both cases, the specialist rarely inter- acts directly with the patient. The professional role is often limited to the interpretation of images. To the patient, there is little difference between a radiologist in the next build- ing and one in the next state. The most important factor driving the growth of teleradiology is that it is reimbursable. Because image interpretation does not involve direct patient contact, few payers make any distinction about where the interpretation occurred. Another area of remote interpretation that is growing rapidly is teleophthalmology, particularly for diabetic retinopathy screening. Systems have been developed that allow nurses in primary care offices to obtain high quality digital retinal photographs. These images are sent to regional centers for interpretation. If diabetic retinopathy is sus- pected, the patient is referred for a full ophthalmologic examination. The store-and-forward modalities have benefited most from the development of the commodity Internet and the increasing availability of affordable high bandwidth connections. The shared commodity Internet provides relatively high bandwidth, but the available bandwidth is continuously varying. This makes it much better suited to the transfer of files rather than for streaming data, like video connections. Although the image files are often tens or hundreds of megabytes, the files are typically transferred to the interpretation site and cached there for later interpretation.

14.3.5 Video-based Telehealth To many people telehealth is videoconferencing. Whenever the words “telehealth” or “telemedicine” are mentioned, most people have a mental image of a patient talking to a doctor over some type of synchronous video connection. Indeed, most early telehealth research did focus on synchronous video connections. For many of the early studies, the goal was to provide access to specialists in remote or rural areas. Nearly all of the early systems utilized a hub-and-spoke topology where one hub, usually an academic medical center, was connected to many spokes, usually rural clinics. Many of the early telehealth consults involved the patient and the primary care provider at one site conferring with a specialist at another site. Most of the state-wide telehealth networks operated on this model. This was so engrained in the telehealth culture, that the first legislation allowing Medicare reimbursement of telehealth consults required a “presenter” at the remote site. This requirement for a “presenter” exacerbated the scheduling problem. Because synchronous video telehealth often uses specialized videoconferencing rooms, the televists need to be scheduled at a specific time. Getting the patient and both clinicians (expert and presenter) at the right places at the right time has forced many telehealth programs to hire a full-time scheduler. The scheduling problem, combined with the advent of more user-friendly equipment, ultimately led Medicare to drop the presenter requirement. Even so, scheduling is often the single biggest obstacle to greater use of synchronous video consultations. A second obstacle has been the availability of relevant clinical information. Because of the inability to interface between various EHRs, it was not unusual for staff to print out 526 P. F. Brennan and J. B. Starren results from the EHR at one site and then to fax those to the other site prior to a synchronous video consultation. Unlike store-and-forward telehealth, synchronous video requires a stable data stream. Although video connection can use conventional phone lines, diagnostic quality video typically requires at least 128Kbs and more commonly 384Kbs (see Chapter 5). In order to guarantee stable data rates, synchronous video still relies heavily on dedicated circuits, either Integrated Service Digital Network (ISDN) connections or leased lines. Within single organizations, Internet Protocol (IP) based video conferencing is being used with increasing frequency. Synchronous video telehealth has been used in almost every conceivable situation. In addition to traditional consultations, the systems have been used to transmit grand rounds and other educational presentations. Video cameras have been placed in operation rooms in hub sites to transmit surgeries for educational purposes. Video cameras were placed in emergency departments and operating rooms of spoke sites to allow experts to “telementor” less experienced physicians in the remote location. Video cameras have been placed in ambulances to provide remote triage. In contrast to the wide variety of research and demonstration projects, few applications of synchronous video have been sustainable. Most programs begun with grant funding ended soon after the grant funding ended. This is in spite of the fact that Medicare has begun reimbursing for synchronous video under limited circumstances. Three categories of synchronous video telehealth stand in marked contrast to the general trend: telepsychiatry, correctional telehealth and home telehealth.

Telepsychiatry In many ways, psychiatry is the ideal clinical domain for synchronous video consultation. Diagnosis is based primarily on observing and talking to the patient. The interactive nature of the dialog means that store-and-forward video is rarely adequate. Physical examination is relatively unimportant, so that the lack of physical contact is not limiting. There are very few diagnostic studies or procedures, so that interfacing to other clinical systems is less important. In addition, state offices of mental health deliver a significant fraction of psychiatric services, minimizing reimbursement issues. This is illus- trated by two projects. In 1995, the South Carolina Department of Mental Health established a telepsychiatry network to allow a single clinician to provide psychiatric services to deaf patients throughout the state (Afrin & Critchfield, 1997). The system allowed clinicians, who had previously driven all over the state, to spend more time in patient care and less time traveling. The system was so successful that it was expanded to multiple providers and roughly 20 sites. The second example comes from the New York State Psychiatric Institute (NYSPI), which is responsible for providing expert consultation to mental health facilities and prisons throughout the state. As in South Carolina, travel time was a significant factor in providing this service. To address the problem, the NYSPI created a videoconference network among the various state mental health centers. The system allows specialists at NYSPI in New York City to provide consultations in a timelier manner, improving care and increasing satisfaction at the remote sites. Consumer Health Informatics and Telehealth 527

Correctional Telehealth Prisons tend to be located far from major metropolitan centers. Consequently, they are also located far from the specialists in major medical centers. Transporting prisoners to medical centers is an expensive proposition, typically requiring two officers and a vehi- cle. Depending on the prisoner and the distance, costs for a single transfer range from hundreds to thousands of dollars. Because of the high cost of transportation, correctional telehealth was economically viable even before the advent of newer low cost systems. Correctional telehealth also improves patient satisfaction. A fact surprising to many is that inmates typically do not want to leave a correctional institution to seek medical care. Many dislike the stigma of being paraded through a medical facility in prison garb. In addition, the social structure of prisons is such that any prisoner who leaves for more than a day risks losing privileges and social standing. Correctional telehealth follows the conventional model of providing specialist consultation to supplement to on-site primary care physicians. This has become increasingly important with the rising prevalence of AIDS in the prison population.

Home Telehealth

After Jeffrey misses two scheduled visits, the Diabetes Educator calls see what is the matter. Jeffery explains that it is a three hour drive from his home to the diabetes center and that his father had trouble taking time off from work to drive Jeffery. The Diabetes Educator notes that Jeffery lives in a rural area and is eligible to receive educational services via teleheath. She signs Jeffery up to receive a Home Telehealth Unit and schedules delivery. After the unit arrives, Jeffery rarely misses a video education session. At one visit, Jeffery complains that is father is always “on his case” about his injections. She schedules the next video visit during an evening when Jeffery’s father can attend. She also schedules Jeffery to have a video visit with the dietitian. Somewhat paradoxically, one of the most active areas of telehealth growth is at the lowest end of the bandwidth spectrum—telehealth activities into patients’ homes. In response to this, the American Telemedicine Association released new guidelines for Home Telehealth in 2002. Synchronous video is provided over so-called plain old telephone service (POTS) connections. In the late 1990s, many believed that home broadband access would soon become ubiquitous and a number of vendors abandoned POTS-based systems in favor or IP-based video solutions. The broadband revolution was slower than expected, especially in rural and economically depressed areas most in need of home telehealth services. A few research projects paid to have broadband or ISDN installed in patients’ homes. Most vendors have returned to POTS-based solutions and a number of new products have appeared in the past three years. In addition to video, the devices typically have data ports for connection of various peripheral devices, such as a digital stethoscope, glucose meter, blood pressure meter, or spirome- ter. Although the video quality would not be adequate for many diagnostic purposes, it is adequate for the management of existing conditions. Figure 14.4B and 14.4C shows actual POTS video quality. Home telehealth can be divided into two major categories. The first category, often called telehome care, is the telehealth equivalent of home 528 P. F. Brennan and J. B. Starren

Figure 14.4. Plain old telephone service (POTS)–based home telehealth. Panel (A) shows the IDEATel Home Telemedicine Unit. Panel (B) shows a typical full-motion video image transmitted over POTS. Because of frame-to-frame compression, images of nonmoving objects can be of even higher quality. Many home telehealth systems are also equipped with close-up lenses to allow providers to monitor medications or wounds. Panel (C) shows a close-up video image of a syringe indicating that the patient has drawn up 44 units of insulin. The small markings are roughly 0.6 mm apart. (Source: Starren, 2003.) nursing care. It involves frequent video visits between nurses and, often homebound, patients. With the advent of prospective payment for home nursing care, telehome care is viewed as a way for home care agencies to provide care at reduced costs. As with home nursing care, telehome care tends to have a finite duration, often focused on recovery from a specific disease or incident. Several studies have shown that telehome care can be especially valuable in the management of patients recently discharged from the hospital and can significantly reduce readmission rates. The second category of home telehealth centers on the management of chronic diseases. Compared with telehome care, this type of home telehealth frequently involves a longer duration of care and less frequent interactions. Video interactions tend to focus on patient education, more than on evaluation of acute conditions. The largest such project to date is the Informatics for Diabetes Education and Telemedicine (IDEATel) project.(Starren et al., 2002) Started in February 2000, the IDEATel project is a 4-year, $28 million demonstration project funded by the Center for Medicare and Medicaid Services (CMS, formerly the Health Care Financing Administration, or HCFA) involving 1665 diabetic Medicare patients in urban and rural New York State. In this ran- domized clinical trial, half of the patients received Home Telemedicine Units (HTU) (Figure 14.4), and half continued to receive standard care. At peak, 636 patients were actively using the HTU’s. In addition to providing 2-way POTS-based video, the HTU allows patients to interact in multiple ways with their online charts. When patients measure blood pressure or fingerstick glucose with devices connected directly to the Consumer Health Informatics and Telehealth 529

HTU, the results are automatically encrypted and transmitted over the Internet into the Columbia Web-based Clinical Information System (WebCIS) at New York Presbyterian Hospital (NYPH) and to diabetes-specific case management software. Nurse case managers monitor patients by viewing the uploaded results, participating in bulletin board discussions, videoconferencing, and answering e-mailed questions daily. The case man- ager receives an alert when a patient’s transmitted values exceed set thresholds. An important distinction between telehome care and disease management telehealth is that interaction in the former are initiated and managed by the nurse. Measurements, such as blood pressure, are typically collected during the video visit and uploaded as part of the video connection. For disease management, the HTU also needs to support remote monitoring, patient-initiated data uploads and, possibly, Web-based access to educational or disease management resources. A project that reversed the conventional notion of home telehealth was the Baby CareLink project.(Gray et al., 2000) This project focused on very low birth weight infants who typically spend months in neonatal intensive care units (NICU). The project used high-speed (ISDN) video connections to connect from the NICU into the parents’ home. This allowed parents who could not visit the NICU regularly to maintain daily contact with their infants. The video connection was supplemented by communication and educational material on a project Web site.

14.3.6 Telepresence Telepresence involves systems that allow clinicians to not only view remote situations, but also to act on them. The archetypal telepresence application is telesurgery. Although largely still experimental, a trans-Atlantic gall bladder operation was demonstrated in 2001. The military has funded considerable research in this area in the hope that surgical capabilities could be extended to the battlefield. Telepresence requires high bandwidth, low latency connections. Optimal telesurgery requires not only teleoperation of robotic surgical instruments, but also accurate force feedback. Such haptic feedback requires extremely low network latencies. Accurate millisecond force feedback has been historically limited to distances under 100 miles. The endoscopic gall bladder surgery mentioned above is an exception to this general principle because that specific procedure relied almost exclusively on visual information. It used a dedicated and custom configured 10Mb/s fiberoptic network with a 155 millisecond latency. Providing tactile feedback over large distances actually requires providing the surgeon with simulated feedback while awaiting transmission of the actual feedback data. Such sim- ulation requires massive computing power and is an area of active research. Telesurgery also require extremely high reliability connections. Loss of a connection is an annoy- ance during a consultation; it can be fatal during a surgical procedure. A novel form of telepresence gives clinicians the ability to not only to see, but also to walk around. A system called the Companion combined conventional video telehealth system with a remote controlled robot. (Figure 14.5). The system is geared toward nursing home and other long-term facilities. It allows clinicians to literally make remote video rounds. A frequent problem with telehealth systems is having the equipment where it is needed. With this system, the telehealth equipment is literally able take itself 530 P. F. Brennan and J. B. Starren

Figure 14.5. “Companion” telehealth robot. The remote clinician (left) is able to control the robot using a joystick. (Source: InTouch Health.)

to wherever it is needed. It is too early to tell whether this model of telepresence will be come widely adopted, but, like many earlier innovative systems, it raises many interest- ing questions.

14.4 Challenges and Future Directions

As CHI and telehealth evolve from being research novelties, to being the way health care is delivered, many challenges must be overcome. Some of these challenges arise because the one patient, one doctor model no longer applies. Basic questions of identity and trust become paramount. At the same time, the shifting focus from treating illness to managing health and wellness requires that clinicians know not only the history of the individuals they treat but also information about the social and environmental context within which those individuals reside. In the diabetes example, knowledge of the family history of risk factors diseases in an area and the appropriate diagnostic and interven- tional protocols aid the clinical staff in providing timely and appropriate treatment.

14.4.1 Quality of Information and Content Credentialing The amount of information available to consumers is growing rapidly. This volume of information can be overwhelming. Therefore, consumers may need help in sifting through the mass of available resources. Furthermore, the quality of such information Consumer Health Informatics and Telehealth 531 varies widely not only in terms of the extent to which it is accepted by the formal medical industry but also in its basic clinical or scientific accuracy. Therefore, a key issue in CHI lies in determining the quality and relevance of health information found on CD- ROMs or Web sites. Credentialing or certification by recognized bodies, such as respected healthcare providers or clinical professional associations, represents one approach to ensuring the quality of health information available to consumers. This approach bases its quality ratings on reviews and evaluations conducted by established knowledgeable sources. It has the advantage of delivering an imprimatur to a CD-ROM or Web site, which informs the user that the information presented meets a standard of quality. Credentialing is most useful when the credential itself is accompanied by a statement indicating the perspectives and biases of those granting it. Information presented by alternative therapies and other non-clinical groups is no less susceptible to bias than is information presented by professional sources. Inherent in the credentialing approach are three disadvantages. First, the challenge to ensure that every information element—every link in a decision program or pathway in a Web site—is tested and evaluated fully exceeds the resources available to do so (see Chapter 20). In many cases, the credentialing approach rests on certification of the group or individuals providing the information rather than approval of the content itself. Second, the credentialing approach leaves control of the authority for healthcare information in the hands of traditional care providers, reflecting both the expertise and the biases of established medical sources. Third, credentialing alone is inherently con- tradictory to healthcare consumerism, which empowers the consumer to make choices consistent with her own worldview. A source’s credential is just an additional piece of information that may be considered in making personal health decisions. An approach to evaluating the quality and relevance of CHI resources that is consistent with a philosophy of patient participation is based on teaching patients and lay people how to evaluate CHI resources. Consumers with sufficient literacy and evaluation skills can locate CHI resources and determine these resources’ relevance to their individual health concerns. Consumers can use six criteria to evaluate the quality and relevance of CHI resources to their situations (Table 14.3). Applying the criteria listed in Table 14.3 to the samples presented in Figures 14.2 and 14.3 illustrates the strengths and weaknesses of the various presentations.

14.4.2 Challenges to Using the Internet for Consumer Health and Telehealth Applications Because of the public, shared nature of the Internet, its resources are widely accessible by citizens and healthcare organizations. This public nature also presents challenges to the security of data transmitted along the Internet. The openness of the Internet leaves the transmitted data vulnerable to interception and inappropriate access. In spite of significant improvements in the security of Web browsing several areas, including protec- tion against viruses, authentication of individuals and the security of email, remain problematic. Ensuring every citizen access to the Internet represents a second important challenge to the ability to use it for public health and consumer health purposes. Access 532 P. F. Brennan and J. B. Starren

Table 14.3. Sample criteria for evaluating consumer health information resources on the Web. Criteria for Evaluating Internet Health Information ● Credibility: includes the source, currency, relevance/utility, and editorial review process for the information. ● Content: must be accurate and complete, and an appropriate disclaimer provided. ● Disclosure: includes informing the user of the purpose of the site, as well as any profiling or collection of information associated with using the site. ● Links: evaluated according to selection, architecture, content, and back linkages. ● Design: encompasses accessibility, logical organization (navigability), and internal search capability. ● Interactivity: includes feedback mechanisms, means for exchange of information among users, and tailor- ing of information to individual needs. ● Caveats: clarification of whether site function is to market products and services or is a primary information content provider. (Source: Criteria for Assessing the Quality of Health Information on the Internet Policy Paper. http:// hitiweb.mitretek.org/docs/criteria.html [Accessed August 8, 2003].)

to the Internet presently requires computer equipment that may be out of reach for persons with marginal income levels. Majority-language literacy and the physical capability to type and read present additional requirements for effective use of the Internet. Preventing unequal access to healthcare resources delivered via the Internet will require that healthcare agencies work with other social service and educational groups to make available the technology necessary to capitalize on this electronic environment for health care. As health care becomes increasingly reliant on internet-based telecommunications technology, the industry faces challenges in insuring the quality and integrity of many devices and network pathways. These challenges differ from previous medical device concerns, because the diversity and reliability of household equipment is under the control of the household, not the health care providers. There is an increased interdepend- ency between the providers of health services, those who manage telecommunication infrastructure and the manufacturers of commercial electronics. Insuring effective use of telehealth for home and community based care requires that clinical services be supported by appropriate technical resources.

14.4.3 Licensure and Economics in Telehealth Licensure is frequently cited as the single biggest problem facing telemedicine (meaning direct patient-provider interactions over telehealth). This is because medical licensure in the United States is state-based, while telemedicine frequently crosses state or national boundaries. The debate revolves around the questions of whether the patient “travels” through the wire to the clinician, or the clinician “travels” through the wire to the patient. Several states have passed legislation regulating the manner in which clinicians may deliver care remotely or across state lines. Some states have enacted “full licensure models” that require practitioners to hold a full, unrestricted license in each state where a patient resides. Many of these laws have been enacted specifically to restrict the out- of-state practice of telemedicine. To limit Web-based prescribing and other types of asynchronous interactions, several states have enacted or are considering regulations Consumer Health Informatics and Telehealth 533 that would require a face-to-face encounter before any electronically delivered care would be allowed. In contrast, some states are adopting regulations to facilitate telehealth by exempting out-of-state physicians from in-state licensure requirements provided that electronic care is provided on an irregular or episodic basis. Still other models would include states agreeing to either a mutual exchange of privileges, or some type of “registration” system whereby clinicians from out of state would register their intent to practice via electronic medium. At the same time, national organizations representing a variety of health care profes- sions (including nurses, physicians and physical therapists) have proposed a variety of approaches to these issues. While the existing system is built around individual state licensure, groups that favor telemedicine have proposed various interstate or national licensure schemes. The Federated State Board of Medical Examiners has proposed that physicians holding a full, unrestricted license in any state should be able to obtain a limited telemedicine consultation license using a streamlined application process. The American Medical Association is fighting to maintain the current state-based licensure model while encouraging some reciprocity. The American Telemedicine Association supports the position that—since patients are “transported” via telemedicine to the clinician—the practitioner need only be licensed in his or her home state. The National Council of State Boards of Nursing has promoted an Interstate Nurse Licensure Compact whereby licensed nurses in a given state are granted multi-state licensure privileges and are authorized to practice in any other state that has adopted the compact. As of 2002, 19 states had enacted the compact. The second factor limiting the growth of telehealth is reimbursement. Prior to the mid-1990s there was virtually no reimbursement for telehealth outside of teleradiology. At present Medicare routinely reimburses for synchronous video only for rural patients. Nineteen states provide coverage for synchronous video for Medicaid recipients. Five states also mandate payments by private insurers. A few insurers have begun experimenting with reimbursement for electronic messaging and online consultation, although this has been limited to specific pilot projects. Although teleradiology is often reimbursed, payments for other types of store-and-forward telehealth or remote monitoring remain rare. Few groups have even considered reimbursement for telehealth services that do not involve patient-provider interaction. An expert system could provide triage services; tailored on-line educational material, or customized dosage calculations. Such systems are expensive to build and maintain, but only services provided directly by humans are currently reimbursed by insurance. Determining whether, and how much, to pay for automatically delivered telehealth services will likely be a topic of debate for years to come.

14.4.4 Roles of Health Professionals in Consumer-Health Informatics Healthcare professionals play three key roles in CHI. First, professionals serve as sources for content. Working in conjunction with software designers, clinicians provide relevant information on the nature and course of illnesses and expected treatment. To be most effective as content experts, clinicians should consider not only the physiological 534 P. F. Brennan and J. B. Starren causes of disease but also the social and environmental causes and consequences of illnesses. Second, professionals provide important guidance in moderating public electronic discussion groups and responding to patients’ electronic messages. This responsibility challenges clinicians to modify existing interventions to ensure proper interpretation and clear communication when interacting with patients electronically. Third, clinicians become information brokers and interpreters for patients, directing patients to relevant resources and using time in the clinical encounter to discuss observations, to help interpret the meaning and relevance of particular information, and to aid patients to translate information into behavioral changes in their lives.

14.4.5 Future Directions Through the Internet and private intranets, a wealth of public health information and provider-oriented information resources are available to clinicians in practice. Workstations connected to secure or public networks facilitate access to public-health information that can help clinicians to diagnose disease and to plan treatment. The primary challenge of the future will be how to best match human professional resources with technology and patient self-management in a way that achieves optimal health outcomes. From the provider perspective, clinicians now encounter patients who come to the appointment prepared with citations from Medline or comments pulled down from an electronic chat group. Working with enlightened patients demands new skills for clinicians and changes the nature of the clinical encounter. Time must be allotted to discuss the information that patients have read, to help patients interpret the relevance of the information to their own situations, and to refer patients to appropriate resources. Clinicians are challenged to become information brokers and to devise new ways to ensure that patients are prepared to participate in the clinical interaction. Traditional medical care uses a workflow model based on synchronous interactions between clinicians and individual patients. The workflow model is also a sequential one in that the clinician may deal with multiple clinical problems or data trends but only within the context of treating a single patient at a time. Medical records, both paper and electronic, as well as billing and administrative systems all rely on this sequential paradigm, in which the fundamental unit is the “visit.” Advances in telehealth are disrupt- ing this paradigm. Devices have been developed that allow remote electronic monitoring of diabetes, hypertension, asthma, congestive heart failure (CHF), and chronic anticoagulation. As a result, clinicians will soon be inundated by hundreds of electronic results and messages every day. The clinician will no longer function in an assembly-line fashion, but will become more like a dispatcher or air-traffic controller, electronically monitoring many processes simultaneously. Clinicians will no longer ask simply, “How is Mrs. X today?” They will also ask the computer “Among my 2000 patients, which ones need my attention today?” Neither clinicians, nor EHRs, are prepared for this change. Technology alone will not determine the extent to which these changes occur. A major social change is needed on the part of both clinicians and patients if they are to become full partners in health care. Patients have been socialized to assume a passive, dependent role in health care, presenting themselves for diagnosis and treatment with Consumer Health Informatics and Telehealth 535 little planning. At the same time, clinicians have enjoyed the privilege of control, holding fast to the possession of expert knowledge and therefore direction to patients. In addition, not all clinicians and patients now or ever will have computers. Furthermore, there will always be many situations where use of technology is not feasible or is inappropriate due to the patient’s physical or mental health status, level of literacy, comfort with technology, or access to information resources. Contemporary pressures to share decision-making with patients and to assume a lon- gitudinal perspective to health problems necessitate that we involve patients early and continuously in their own care. Further development of consumer-health technologies will allow patients to have access to the knowledge that they need for care and the ana- lytical tools necessary to ensure that they know their own minds. Technology also will increasingly support the clinician in integrating patient preferences, scientific knowledge, and practical realities of care into efficient treatment plans. The availability of new and integrated public-health technologies will ensure the expansion of reference from the individual in the clinic, to her home, community, and life. Perhaps the greatest long-term effect of the information/communications revolution will be the breaking down of role, geographic, and social barriers. Medicine is already benefiting greatly from this effect. Traditional “doctors and nurses” are collaborating with public health professionals; the sick and the well can easily access information that only 5 years ago was unavailable to the lay public (or did not exist at all); everyone with computer access can potentially communicate with experts around the world. We now have the tools to develop new healthcare models, wherein clinicians, community leaders, families, and friends collaborate to prevent illness, promote health, care for the sick, and develop and administer new therapies. This vision is no longer a pipe dream: We can do it today. The challenge will be to facilitate productive collaborations between patients, their caregivers, biomedical scientists, and information technology experts.