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Quality Through Collaboration: The Future of Rural Health 6 Rural Health Care in the Digital Age1 SUMMARY The health care sector is undergoing a critical transition from a delivery system aimed at providing episodic institutional care for the treatment of illnesses to an emphasis on information systems that support community-based care, with greater consumer involvement in the prevention and management of illness across the life span. The development of an information and communications technology (ICT) infrastructure is a critical element of this transition. ICT is a powerful tool with much potential to produce improvements in all six quality aims set forth in the Quality Chasm report—safety, effectiveness, patient-centeredness, timeliness, efficiency, and equity—in all geographic areas. In rural America, appropriate use of ICT can bridge distances by providing more immediate access to clinical knowledge, specialized expertise, and services not readily available in sparsely populated areas. This chapter provides a discussion of the potential impact of ICT on health care delivery in rural areas; an overview of efforts under way to build local and national health 1 Much of this chapter was adapted from a commissioned paper by Thomas S. Nesbitt, Peter M. Yellowlees, Michael Hogarth, and Donald M. Hilty entitled “Rural Health in the Digital Age: The Role of Information and Telecommunicatioon Technologies in the Future of Rural Health” (March 18, 2004).
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Quality Through Collaboration: The Future of Rural Health information infrastructures, with emphasis on developments in rural areas; and recommendations for addressing key issues and challenges specific to rural areas. Over the past several decades, two important trends shaping health care delivery have accentuated the need for information and communications technology (ICT) as a key tool for supporting system improvement. First, there has been an exponential increase in medical knowledge. Sizable public and private investments in clinical research have led to a vastly expanded clinical knowledge base and many new drugs, medical devices, and other interventions, offering much potential to improve health and reduce pain and suffering. But translating new medical knowledge into practice has been difficult and slow (Balas et al., 1998). It is no longer possible for an individual clinician, relying solely on the unaided human mind, to remain abreast of the expanding knowledge base and apply this knowledge appropriately to each patient (Becher and Chassin, 2001; Jerome et al., 2001). Computer-aided decision supports (e.g., reminders, prompts, and alerts) are needed to translate knowledge effectively into practice and safely utilize the many drugs and devices currently available. Second, the life expectancy of the American public has been increasing (in part as a result of successes of the health care system), leading to an increased need for the management of chronic conditions (Anderson and Horvath, 2002; IOM, 2001a, 2003e; NCHC, 2002). About 40 percent of the American public have one or more chronic conditions, and approximately one-half of these individuals have two or more such conditions (Anderson and Horvath, 2002). Individuals with multiple chronic conditions see an average of six different clinicians per year and often receive care in multiple settings (e.g., hospital, rehabilitation facility, home health care provided in the community). Appropriate management of chronic conditions requires a high degree of communication among members of the care team and between clinicians and patients (as well as informal caregivers), and immediate access to complete patient records by all authorized users. Management of many chronic conditions also requires informed and engaged patients willing to modify health behaviors, monitor key health indicators, and implement complex medication and treatment regimens. In the current health care delivery system, however, most critical patient information is recorded in handwritten medical records dispersed across various settings, including ambulatory practices, hospitals, nursing homes, and others. Clinical information does not travel with the patient, nor is it readily accessible by clinicians or the patient. Lacking computerized patient
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Quality Through Collaboration: The Future of Rural Health data, the current health system makes only minimal use of computer-based decision support tools (e.g., practice guidelines, preventive service reminders, potential drug–drug interaction alerts) to assist clinicians and patients in applying knowledge safely and effectively. For the most part, communication between clinicians and patients is limited to face-to-face visits or telephone calls, with only minimal use of e-mail. Information technology is a particularly valuable tool for the redesign of the health care delivery system in rural areas. Compared with their urban counterparts, rural providers often practice on a much smaller scale and in greater isolation than urban providers; they tend to be generalists, but are often called upon to provide specialist services not available locally (Hart et al., 2002; Rosenblatt, 2000); and they must coordinate a larger number of transfers to facilities in distant locations (Melzner et al., 1997). Improving the quality of health care ultimately requires improving the availability of health care information. The better information health care professionals have, the better they can diagnose illness, identify health improvement opportunities, discuss treatment options with patients, implement interventions, and achieve the desired outcomes (James, 2003). Similarly, information is necessary for patients to make choices consistent with their values and preferences. Finally, access to de-identified patient data can enhance health services research and population health surveillance systems. Central to this process is the need to maintain an electronic health record (EHR) that is complete and readily accessible to all providers and others with a need and right to know. Computerized patient data and a secure network for communication and information exchange open up many opportunities to deliver services over the electronic highway. These “telehealth” services2 range from relatively simple to very complex ICT applications, including e-mail communication between clinicians and patients; remote language and cultural interpreting; telemedicine (the provision of medical care from a distance using telecommunications technology); remote monitoring of patients in homes, intensive care units, or other locations; and eventually robotic surgery (Allen et al., 1997; Eadie et al., 2003; Field and Grigsby, 2002; Glick and Moore, 2001; Quintero et al., 2002). 2 Telehealth is a broad set of applications using communications technologies to support long-distance clinical care, consumer and professional health-related education, public health, health administration, research, and EHRs (Matherlee, 2001).
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Quality Through Collaboration: The Future of Rural Health Although an ICT infrastructure is a prerequisite to moving to a health system that employs telehealth care delivery and decision support, accomplishing these objectives involves more than the simple use of technology. It also involves major redesign of care processes, along with changes in the roles and relationships of clinicians and patients. In addition, developing the ICT infrastructure requires a community-based approach that leverages public and private resources across sectors. Thus making a successful transition necessitates careful attention to human, organizational, and technological factors (Castelnuovo et al., 2001; Stanberry, 2000; Yellowlees, 1997). The next section of this chapter provides an overview of the many applications of ICT in rural health care environments to improve quality of care. The following two sections are devoted, respectively, to a discussion of the current status of ICT in health care and the identification of actions that can be taken to accelerate the adoption of ICT in rural settings. The final section presents conclusions and recommendations. ICT APPLICATIONS IN RURAL SETTINGS The development of an ICT infrastructure opens up many opportunities to improve health and health care in rural areas. Changes in health care delivery at all levels will result (BCG, 2003; Liederman and Morefield, 2003), including: Care at home and in the community Care provided in health care settings Ambulatory and clinic care Hospital care Population health As important as the many new applications at each of these levels is the expected change in the distribution of care across levels. With the advent of telehealth, much care in the future will likely be provided in the patient’s home. As discussed in Appendix C, the role of hospitals in many rural areas has already begun to change quite significantly in the last decade or two—from acute inpatient facilities to community health systems that encompass a good deal of ambulatory as well as inpatient care. Following is a brief discussion of the ways in which care delivery in rural areas will likely change over the coming decade. For the most part, these changes are already under way in some geographic areas, and when avail-
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Quality Through Collaboration: The Future of Rural Health able, examples and evidence of their impact are cited. Nonetheless, a great deal is still unknown about the benefits, costs, and intended and unintended consequences of the dramatic changes in care delivery that are unfolding. Applications at Home and in the Community ICT offers many new opportunities for rural residents to access health information, communicate with the health system from home for clinical and administrative purposes, and manage their chronic conditions more effectively. Likewise, rural individuals residing in community-based long-term care and assisted living facilities and the providers who care for them can greatly benefit from the ICT applications that will enable them to better coordinate care and health information across settings. Enabling Access to Health Information The Internet has enabled instant access to health information and resources on the Web, including medical journals, clinical guidelines, and databases encompassing the world’s knowledge about conditions and diseases, as well as specially crafted patient-oriented materials, decision support tools, and online communities where patients can interact. However, the quality of information available on the Internet is highly variable (Berendt et al., 2001; Griffiths and Christensen, 2000). There are reliable sites that screen information carefully and organize the content to best meet the needs of consumers; examples are the National Library of Medicine’s MedlinePlus and the Mayo Clinic website (NLM, 2004a; Mayo Clinic, 2004). Through partnerships between information providers and health care professionals, patients can be directed to quality sites by means of “information prescriptions” that can be filled at home for those with computer connections or at local public libraries (ACP, 2003; CIT, 2004). It is important to keep in mind that, as discussed earlier, low levels of health literacy and math skills in the U.S. population make communicating health information challenging. Indeed, an estimated one-half of the population likely experience difficulty understanding most health-related materials (IOM, 2004). Communicating with the Health System As patient and provider access to the Internet has grown, signs of a shift from face-to-face and telephone communication to e-mail and other
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Quality Through Collaboration: The Future of Rural Health Internet-based communication modes are beginning to emerge, but this shift is very slow. Some rural health care providers have established Internet-based scheduling systems, such as the High Plains Rural Health Network (Versweyveld, 2001), that allow patients to schedule appointments in real time. The Geisinger Health System in Pennsylvania allows patient and their families to access their medical records to make appointments, check laboratory results, and order prescription refills (Rundle, 2002). In some instances, patients are also communicating with clinicians by e-mail. Currently, most long-term care and assisted living facilities are limited in their technology capabilities, including administrative applications to process reimbursement claims and links to federal databases that monitor and track compliance with Medicare regulatory requirements, quality measures, and patient outcomes (IOM, 2001b). These facilities are now looking to implement ICT (i.e., EHRs and telemedicine systems) that can facilitate care coordination and management of health information as the patient moves through the care continuum (e.g., acute, hospital, assisted/long-term) or consults with physicians located in urban areas. ICT systems not only better support each “physician/facility handoff” by having the patient’s documents and records available electronically through a single secure portal rather than distributed widely into different records for each provider, but also extend the facilities’ reach to specialists and experts that are not available in rural areas, such as oncologists or neurologists. Managing Chronic Conditions Many ICT applications are designed to improve the management of chronic conditions, and these applications are increasingly being bundled into comprehensive chronic care management programs. Disease registries—online databases for monitoring certain chronic conditions—represent a low-cost method for online patient and provider data entry and monitoring of patient self-care. These registries include evidence-based guidelines, measures for improvement, and patient notifications for follow-up care. Numerous Internet sites provide condition-specific educational materials. The Internet also affords access to support groups (Fox and Fallows, 2003). Personal health records (PHRs) frequently include personalized education and health behavior monitoring tools (Waegemann, 2002). As discussed in earlier chapters, rural areas often lack a critical mass of people with a particular chronic condition, making it difficult to form a support group, but there are now online support groups available for nearly
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Quality Through Collaboration: The Future of Rural Health every chronic condition. Online support groups, or chat rooms, may or may not be supervised by a medical care provider or “expert in that area of expertise” (White and Dorman, 2001), and little research has been conducted on the benefit of either sponsored or unsponsored electronic support (Johnson et al., 2001). There are many examples of ICT applications, such as remote monitoring and telemedicine, being used for the home care of patients with chronic diseases including diabetes, asthma, and heart disease, as well as patients with chronic wounds, or mental health conditions (Kobb et al., 2003; Kobza and Scheurich, 2000; Romano et al., 2001; Smith et al., 2002). Remote monitoring integrates a variety of devices, including medication organizers and reminders, and devices that measure glucose levels, heart rate, blood pressure, weight, temperature, prothrombin time, and pulmonary function. Video-based telemedicine conferencing technologies for rural pediatric asthma patients has resulted in significantly reduced frequency of symptom experience and increased quality of life for both patients and their caregivers (Romano et al., 2001). Telemedicine has been shown to be effective in teaching behavioral self-regulation techniques to patients with chronic pain (Appel et al., 2002). In a study of elderly patients with congestive heart failure, in-person monitoring was found to be more effective in identifying edema and wheezing, but telemedicine yielded earlier identification of abnormal changes in nail color (Jenkins and White, 2001). Internet-based applications and telemedicine videoconferencing are increasingly being used for cognitive behavioral therapy and patient education for patients with disorders such as depression, anxiety, and substance abuse. Also, technology for therapy sessions is a growing resource for those needing long-distance care (Baigent et al., 1997; Hilty et al., 2003). Despite the promise of ICT, however, fewer than 200 home health programs are currently using these technologies, and only a very small portion of these programs are located in rural areas (Chetney, 2002; Field and Grigsby, 2002; Johnston et al., 2000; Smith et al., 2002). Applications in Health Care Settings ICT will likely have a very significant impact on providers in health care settings. Following is a brief discussion of applications in the areas of e-encounters, remote language and cultural interpretation, knowledge and decision support, storage and retrieval of diagnostic and health information, distance consultations and patient monitoring, and emergency care.
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Quality Through Collaboration: The Future of Rural Health E-encounters Estimates of physicians’ use of e-mail to communicate with patients range from fewer than 10 percent of physicians to 25 percent (Bennett, 2002; Von Knoop et al., 2003). The slow adoption rate of e-encounters is likely attributable to the failure of most third-party payers to compensate providers for time spent in this manner (ACP, 2003). Some payers have begun to reimburse for e-mail consultations, however. For example, Blue Cross/Blue Shield of Massachusetts now pays physicians $19 for responding to patient e-mails, with about a $5 patient copayment. E-mail often takes the place of phone calls and brief office visits for such purposes as refills and adjustment of medications for both acute and chronic disease. Remote Language and Cultural Interpretation Providing professional language and cultural interpreting services presents a significant problem for rural providers, particularly in small clinics that serve patients from diverse ethnic and cultural backgrounds who may speak several different languages. Telecommunications technology has been used to address language barriers through the use of voice-only services that are available through a number of commercial telecommunications companies. Likewise, video has been used to deliver sign language interpretation to hearing- and speech-impaired populations in the United States, Sweden, and Australia (IOM, 2002b). Knowledge and Decision Support It is not unusual for each outpatient visit to generate at least one clinical question the physician is unable to answer (Bodenheimer et al., 2002). Only 30 percent of knowledge-based information needs perceived by internists during an outpatient visit are met (Covell et al., 1985). Thus there is a clear need for relevant medical knowledge at the point of care. This is especially true in rural areas, which rely extensively on generalists to handle a broad range of conditions. The impact of information interventions on the quality of care has been described in the literature (King, 1987; Klein et al., 1994; Lindberg et al., 1993; Marshall, 1992), with one study focusing specifically on the impact of a virtual library in rural areas (Richwine and McGowan, 2001). The potential role of medical librarians in reducing medical errors has also been documented (Homan, 2002). In recent years, some progress has been made in enhancing rural pro-
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Quality Through Collaboration: The Future of Rural Health viders’ access to clinical knowledge. A number of mainstream medical publishers offer their content in web-enabled form, which dramatically facilitates distributed computerized access. University and community-based health systems also offer online, shared medical libraries that provide access to patient management tools such as clinical guidelines and condition-specific information and medical journals, in addition to links to information sources such as those offered by the National Library of Medicine and commercial sites. The National Library of Medicine provides grant funds for the development and integration of context-appropriate information, standards-based information management, and digital libraries; an example is the University of Iowa Hospitals and Clinics digital health sciences libraries, which provide information to physicians in six rural communities (D’Alessandro et al., 1988). Projects that involve rural public librarians and medical librarians bring quality health information and expertise to rural areas, with the goal of enabling health professionals to make more evidence-based decisions about their patient care practices and allowing the public to make informed decisions about their health. Much of this work is coordinated through the more than 4,800 medical libraries that are members of the National Network of Libraries of Medicine. This network works with a variety of intermediaries, including health care providers, population health professionals, public librarians, educators, community organizations, health advocacy groups, faith-based organizations, and self-help groups (NLM, 2004b). Network members have engaged in a number of projects funded by the National Library of Medicine and others related to the use of information technology in rural areas, including special projects for American Indian and Alaska Native communities (Duesing, 2002; Guard et al., 2000; McCloskey, 2000; McGowan, 2000; Pifalo, 2000; Spatz, 2000; Wood et al., 2003). Decision support systems have also been shown to be highly effective and are expanding rapidly in use (Tierney, 2001). These systems consist of a knowledge database that links to clinical applications, such as alerts and reminders or evidence-based guidelines to help clinicians make decisions about patient care, and should make clinical practice safer, more accountable, and of higher quality. Decision support systems have been used in many settings, from primary care to the intensive care unit (Varon and Marik, 2002), and are increasingly available on the Internet in combination with systems for electronic prescribing and storage of EHRs (Smithline and Christenson, 2001). Something as simple and easy to use as a personal digital assistant can download several clinical application programs (e.g., drug interaction checking) to improve provider decision support immediately and
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Quality Through Collaboration: The Future of Rural Health inexpensively. Decision support systems designed to assist informal caregivers should be developed as well and are part of the promise for the future. Storage and Retrieval of Diagnostic and Health Information Store-and-forward applications are the methods by which still-frame images, voice or sound recordings, and medical data such as patient history, physical examination findings, and test results are captured, stored, and transmitted by e-mail or Internet posting. Alaska’s telemedicine network, for example, uses store-and-forward e-mail protocols to transmit electrocardiograms to cardiologists in regional centers (Patricoski and Ferguson, 2003). Protocols have also been developed for teleneurology diagnostics in developing areas where real-time transmission of electroencephalogram data would be difficult (Patterson et al., 2001). Store-and-forward imaging applications are particularly effective in dermatology and ophthalmology. A number of studies have proven the clinical and cost effectiveness of these programs for screening and disease monitoring for retinopathy in diabetes and for melanomas and other skin cancers (Cummings et al., 2001; Liesenfeld et al., 2000; Rotvold et al., 2003). New systems that digitally capture and store radiology images (e.g., picture archiving and communication systems) eliminate the need for local film processing and reading. Distance Consultations and Patient Monitoring Real-time two-way video-based telemedicine entails a videoconference between a provider and a patient in a remote location with or without the referring provider being present. Teleconsultations can thereby bring the medical expertise of a specialist to the point of care. Many such programs entail attaching scopes to a two-way videoconferencing unit, such as a high-resolution, magnifying camera for observing dermatologic lesions or wounds, video otoscope, or video nasopharyngoscope. Electronic stethoscopes have been used for the transmission of audio output to pulmonologists and cardiologists. The interactive consultation also serves as a learning experience for the primary care provider. Generalists can have ready access to a broad array of specialists (e.g., radiologists, trauma surgeons) to assist with diagnosis and treatment, compensating for the specialist supply shortage. In addition, physicians can learn new surgical procedures (e.g., minimally invasive laparoscopic surgery) with a telementor and expert guide.
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Quality Through Collaboration: The Future of Rural Health Telepsychiatry has been used quite extensively to increase access to psychiatric experts in areas with shortages of these specialists (which, as noted earlier, are common in rural areas (Armstrong and Frueh, 2002; Hilty et al., 2003; Jennett et al., 2003; Kennedy and Yellowlees, 2000; McLaren et al., 2003; Nelson et al., 2003; Nesbitt and Marcin, 2002). Software that uses the technique of cognitive behavioral psychotherapy has been shown to be reasonably effective for the treatment of simple depression, panic disorders, and simple phobias. The use of telemedicine in inpatient settings will allow rural hospitals to keep more patients in the community and to raise the quality of care provided. For example, intensive care unit patients in rural hospitals can benefit from monitoring by intensivists located in urban areas through the use of videoconferencing and remote monitoring, resulting in reduced mortality, morbidity, and costs (Breslow, 2000; Celi et al., 2001; Marcin et al., 2004; Rosenfeld et al., 2000). Emergency Care Distance applications have become important to improving the quality of emergency care in rural areas. Several mechanisms now exist for wireless communication, including cordless, cellular, satellite, paging, and private mobile radio systems (Casal et al., 2004). These technologies, along with live video teleconsultations, are being employed for early-intervention, prehospital emergency care during ambulance transport. For example, studies of cardiac emergencies have shown that data transfer capabilities allow physicians to monitor electrocardiograms during prehospital care and determine whether and when to administer thromobolysis, saving valuable time in the critical moments of care by first responders (Keeling et al., 2003). Telemedicine is also being used for prehospital care related to abdominal sonography (Strode et al., 2003). One study forecasts a 15 percent decline in ambulance transports if prehospital telemedicine were used (Haskins et al., 2002). As with care generally, telemedicine can play a significant role in emergency care in rural areas, bringing some of the expertise that may not be available locally into the emergency department via video consultation. A number of specialties have been incorporated into remote emergency rooms in this manner—initially radiology, then as technology advanced, cardiology, orthopedics, and surgery (Hashimoto et al., 2001; LaMonte et al., 2003; Lee et al., 1998; Levine and Gorman, 1999; Raikin et al., 1999; Sable, 2001;
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Quality Through Collaboration: The Future of Rural Health be educated about the realities of the rural health care environment and the needs of rural clinicians in moving forward with ICT. Both rural and urban provider facilities must have input into the strategic processes and development of a comprehensive, viable plan for implementing EHRs and telemedicine technologies progressively over time. Another important aspect of the adoption of ICT is obtaining the commitment of clinicians to use the technologies and to provide ongoing feedback regarding any hesitations or problems associated with their use. Important as well is the identification of a technology champion to lead and support the implementation and use of ICT at the provider level. Individual practice providers and those belonging to networks in rural areas also should participate in quality improvement initiatives linking them to regional organizations that can further support them in their efforts to incorporate ICT. The National Library of Medicine and the National Network of Libraries of Medicine have an extensive track record of providing educational resources to communities (NLM, 2004b). Among the lessons learned from their outreach projects for health professionals is that the barriers to the adoption of ICT are multidimensional, but that the process of changing health professionals’ information habits is facilitated by repeated contact, including hands-on training, and by awareness that there is a human resource that can be consulted as questions and problems arise (Wallingford et al., 1996). Recommendation 12. The National Library of Medicine, in collaboration with the Office of the National Coordinator for Health Information Technology and the Agency for Healthcare Research and Quality, should establish regional information and communications technology/telehealth resource centers that are interconnected with the National Network of Libraries of Medicine. These resource centers should provide a full spectrum of services, including the following: Information resources for health professionals and consumers, including access to online information sources and technical assistance with online applications, such as distance monitoring. Lifelong educational programs for health care professionals. An on-call resource center to assist communities in resolving technical, organizational, clinical, financial, and legal questions related to information and communications technology.
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