Rural Health Care in the Digital Age1
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
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
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).
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
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-
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
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
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.
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-
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
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.
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).
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;
Trippi et al., 1996). A North Carolina study found that use of teleradiology for diagnosis and treatment resulted in changes in nearly 30 percent of cases, as well as high levels of user satisfaction and confidence in these technologies (Lee et al., 1998). Another study in Vermont demonstrated significant benefit when trauma surgeons were available to rural emergency departments via videoconferencing during the initial evaluation and treatment of trauma victims (Ricci et al., 2003). ICT applications for ancillary services associated with emergency care, such as pharmacy, also are important to providers in rural areas. The value of these technologies for making more intelligent triage decisions has been established as well.
Population Health Applications
The systems and entities that protect and promote the population’s health face a new set of challenges in the twenty-first century—obesity, toxic environments, a large uninsured population, and emerging threats such as antimicrobial resistance and bioterrorism (IOM, 2003b). The social, cultural, and global contexts of population health are also undergoing dramatic change. Genomics and informatics are extending the limits of human knowledge more rapidly than can be absorbed and acted upon. People, products, and germs can migrate more rapidly, and the nation’s demographics are shifting in ways that will further challenge public and private resources (IOM, 2003b). While many population health surveillance systems are still operational, the need for next-generation technology is widely recognized. Advanced information technology systems are critical to the ability of population health systems to meet the new challenges to population health and preparedness.
Population health services and interventions are highly dependent on quality information to both locate and identify intervention targets, and then measure the effectiveness of the interventions. There is a need for intelligent information systems that enable population health data to be collected as a byproduct of care without adding to practitioners’ workloads, and that allow for the use of more sophisticated data mining and analysis tools to interpret the increasing amounts of new data being collected (Mueller et al., 2003).
The Robert Wood Johnson Foundation is supporting the project Turning Point: Collaborating for a New Century of Public Health Initiatives to transform the population health system into a model that is more effective, more community-based, and more collaborative. Areas in which ICT could help population health officials perform their activities better include dis-
ease mapping and surveillance, quality of service, patient tracking for hospitals and clinics, services available within the community, vital statistics, environmental health, data analysis, information dissemination and health education, immunization, and laboratory reports (Burke and Evans, 2003). Improving ICT for the population health system would also allow rural areas to access the expertise of essential population health professionals at the state department of health as needed, making access to this specialized knowledge economically feasible for communities whose need for such services may be sporadic and immediate (NACRHHS, 2000). The use of ICT for communication among population health entities is essential as well for emergency preparedness, first-responder capabilities, and linkage to the Centers for Disease Control and Prevention’s new Health Alert Networks (PHPPO, 2002). In addition, the National Library of Medicine has coordinated a project entitled Partners in Information Access for the Public Health Workforce, whose goals include organizing and delivering population health resources so they are easier to find and use (NLM Fact Sheet, July 2004: http://www.nlm.nih.gov/nno/partners.html).
CURRENT STATUS OF ICT IN HEALTH CARE
Several IOM committees and other expert groups have called for increased use of ICT in health care for quite some time. As early as 1991, the IOM recommended that the health sector transition from paper-based to computer-based patient records within 10 years (IOM, 1997). In 2000, the IOM Committee on the Quality of Health Care in America concluded that ICT “must play a central role in the redesign of the health care system” to achieve a significant improvement in quality (IOM, 2001a, p. 16). Numerous government panels, including the National Committee on Vital and Health Statistics (2001) and the President’s Information Technology Advisory Committee (2001) have called for the development of a National Health Information Infrastructure (NHII). The Connecting for Health initiative of the Markle Foundation has engaged hundreds of public- and private-sector stakeholders in collaborative efforts to advance interconnectivity and the use of EHRs (Markle Foundation, 2003). Recently during his State of the Union address, President Bush announced a commitment to ensuring that all Americans have EHRs within 10 years (WH, 2004a).
Implementing these technologies requires the development of an ICT infrastructure with major building blocks that include the following:
National data standards—specifications for the collection, coding, and exchange of clinical and other information pertaining to patients.
EHRs—computer-based patient records maintained by health care providers (e.g., hospitals, ambulatory settings, nursing homes, home health providers) that include a spectrum of clinical and patient data, such as demographic data, diagnostic and treatment data, ancillary test results, progress notes, and insurance and billing data.
PHRs—computer-based patient records maintained by patients and informal caregivers that include such information as preventive health information, health education material, medication and other treatment plans for chronic conditions, and tracking of health behaviors and key indicators.
Information exchange networks—clinician and patient access to a secure environment on the Internet for communication and information-sharing purposes.
Establishing an ICT infrastructure for health care will require the participation of many stakeholders. The federal government, in collaboration with private-sector standards-setting bodies, must promulgate the data standards that will allow for the meaningful exchange of patient and other data. Providers must migrate from paper medical records to EHRs, and patients must obtain and use PHRs. Public–private partnerships must be created at the community level to establish and maintain information exchange networks. The partnerships necessary to build the networks must also expand beyond the health sector to other sectors in the local community, such as education and regional businesses that can benefit from improved ICT infrastructure.
The use of ICT is growing in rural areas. While the implementation of ICT is currently incomplete and uneven across the domains of the health sector in both urban and rural areas, overall, rural areas lag behind urban in establishing the critical ICT building blocks outlined above. This section provides an overview of the current status of ICT adoption in rural areas as background for further discussion on how to address barriers to the development of a more comprehensive rural health ICT system.
With the advent of the Internet, access to health information has improved dramatically in the last decade (Anderson, 2001b; Nesbitt et al., 2002). As of 2003, about 63 percent of the U.S. adult population was using
the Internet, and an estimated 93 million of these 126 million people were using it to access health information (Madden and Raine, 2003). Nearly one-third of these users reported having broadband connections. One study found that 40 percent of all Internet users had sought advice or information about health or health care, and one-third stated that the information obtained had affected a health care decision (Helms, 2001). In a survey by the Pew Internet and American Life Project, 61 percent of respondents said the Internet had improved the way they took care of themselves either “a lot” or “some.” And while some are concerned about the quality of online health information, the ability to contribute to a more informed patient population is embraced by many health professionals.
Although Internet access is growing, however, some groups lag behind, including racial and ethnic minorities, those with low incomes and educational levels, older people, and residents of rural areas (Madden and Raine, 2003). Progress is being made in closing some of these gaps. Between 1998 and 2001, for example, the growth of Internet use in rural areas increased from 24 to 53 percent (OTP, 2004). A community-based effort to build the necessary telecommunications infrastructure and provide training for computer literacy will help residents to improve information access and communication for multiple purposes, including health care.
The proportions of practicing physicians who work online from home, from their personal office areas, and from their clinical work areas are all increasing (Taylor and Leitman, 2001). A nationwide survey of 834 physicians comparing 1999 and 2001 data found that by 2001, 55 percent of all practicing physicians were using e-mail to communicate with professional colleagues and 34 percent to communicate with their support staff, while 42 percent of all physicians worked in practices with websites. However, only 13 percent of all doctors were communicating with any of their patients via e-mail, and 7 percent of physicians were not online anywhere (Taylor and Leitman, 2001). A survey of the approximately 60,000 members of the American Academy of Family Physicians (25 percent of whom practice in rural areas) found that 80 percent were connected to the Internet, and rapid migration to either digital subscriber line (DSL) or cable modems for high-speed networks was occurring (Kibee, 2004).
Electronic Health Records
Results of an industry survey conducted in 2002 indicate that just 13 percent of private-sector inpatient facilities and 14–28 percent of ambula-
TABLE 6-1 Electronic Data Capture by Regional Population
> 1 million
SOURCE: Lorence et al., 2002.
tory care facilities use EHRs (Brailer, 2003). As shown in Table 6-1, EHR adoption in metropolitan areas is 1.5 times greater than in small rural areas (Lorence et al., 2002). As discussed below, factors that have contributed to the slow adoption of EHRs in the health care sector include the lack of national data standards and finance issues.
Several factors that have precipitated the lag in widespread adoption of EHRs (e.g., organizational leadership, financing, and technology infrastructure) are now being addressed and are discussed later in this chapter. To facilitate national adoption of EHR systems, the IOM built upon its original 1991 report on the computerized patient medical record and released its 2003 Letter Report on Key Functionalities of EHRs (http://www.nap.edu/catalog/10781.html?npi_newsdoc073103). The report provides a list of the ICT applications associated with each functionality, as well as a plan for progressively implementing the applications over the next 8 years.
Personal Health Records
EHRs are also important because they are the foundation for a computerized PHR. PHRs allow individuals access to portions of their EHR (e.g., diagnoses, medications, laboratory test results) through a secure portal. Patients may enter information as well, such as diet, exercise, adherence to treatment plans, and over-the-counter medications. PHRs can include (1) offline records that can be carried in paper-based files/booklets or on a CD-ROM or smart card; (2) Web-based commercial PHRs, whereby one’s health information is stored on a secure webpage; (3) functional/purpose-based PHRs, which are Web-based records related to a specific service, such as emergency care; (4) provider-based PHRs, whereby the provider or health
plan makes some of the patient’s health information available on the provider’s website; and (5) partial PHRs, whereby patients keep a file of health information and literature about diseases and conditions downloaded from the Web, which can also be used by the Web provider for marketing purposes (Waegemann, 2002).
A recent review of 12 web-based PHRs, however, found that these systems had limited capabilities and were difficult to navigate (Kim and Johnson, 2002). Most PHRs are simply a file of data; few have decision support capabilities that would help patients manage their chronic conditions. Not surprisingly, then, only a small fraction of the population use PHRs (Waegemann, 2002). PHRs may ultimately prove to be a highly valuable tool to assist patients with their care; however, much work needs to be done to improve their functionality, usefulness, and appeal to consumers.
As discussed earlier, telemedicine has a number of applications in patient care, education, research, administration, and population health (Wakefield, 2002) and has the potential to be an important means of equalizing the differential availability of resources in rural and urban areas (Hartley et al., 2002; Wholey et al., 2003). The federal government and some academic institutions have used two-way videoconferencing in health care for almost 40 years, but not on a widespread basis because of costs, provider reluctance, lack of perceived need, and limited telecommunications infrastructure (Perednia and Allen, 1995). With the introduction of digital telephone lines and the decreasing cost of hardware and software in the 1990s, videoconferencing is on the rise as a medium for providing health services (Hassol et al., 1997a,b). The Department of Commerce recently reviewed the telehealth projects supported by a number of federal agencies3 and estimated that allocations of $332 million were made for such projects in 2001 (OTP, 2004). Because of the disjointedness of the projects, however, one of the key recommendations in the Department of Commerce report is the development of a national database for telehealth. The committee concurs
that greater coordination and a centralized database for monitoring federally sponsored telehealth programs would be beneficial.
Many rural communities and providers are actively engaged in telehealth. A 1997 survey of 2,472 nonfederal rural hospitals indicated that 30 percent (700) of rural health care organizations were engaged in some form of telehealth (OTP, 2004). A 1999 study by the Agency for Healthcare Research and Quality (AHRQ) identified 455 telemedicine projects worldwide, 362 of these in the United States, 120 of which were in rural areas. Patient volumes in these latter projects remain low given the demographics of rural areas. The AHRQ study found the most common applications to be consultations or second opinions (80 percent), diagnostic test interpretation (47 percent), chronic disease management (36 percent), posthospitalization or postoperative follow-up (28 percent), emergency room triage (26 percent), visits by a specialist (22 percent), and services in patients’ homes (14 percent) (OTP, 2004). Many of the projects included more than one application.
ICT applications depend on the exchange of data among providers, patients, and vendors. For the most part, exchanging data requires access to digital lines, along with national data standards to facilitate meaningful communication and protect confidentiality.
For the majority of health care ICT applications, especially those involving the transmission of large amounts of information for real-time interaction, higher-bandwidth digital lines are required. Telemedicine for intensive care units using two-way interactive video, for example, requires high-speed digital lines with large bandwidth (e.g., fiber optics, DSL).4 For some simpler applications, such as the transfer of still images using store-and-forward technology, a simple Internet service provider (ISP) connection over ordinary telephone lines may be adequate.
While the penetration of basic telephone service is at about 95 percent for rural households and essentially 100 percent for rural hospitals and clinics, access to higher-speed digital lines is limited. A study conducted in 2000 found that cable modem service and DSL were offered in fewer than 5 percent of towns with a population of 10,000 or less; by comparison, modem service is offered in more than 65 percent of cities with 250,000+ popula-
tion, and DSL is available in more than 56 percent of all cities with 100,000+ population (Allen, 2001). This aspect of the digital divide is one of the greatest challenges for rural telehealth, as well as other rural commerce.
As noted earlier, data standards5 are another important aspect of ICT requirements. To be most user-friendly, information exchanges require common standards for how the data are packaged, how systems interact, and what vocabulary is used to represent the information (IOM, 1997). When the sending and receiving systems use the same data standards, health information can flow more easily from one system to another. Telehealth applications such as the transmission of radiological images, physician order entry systems, and home care medical device monitoring systems rely on data communication standards to speed transmission and improve connections among users (typically referred to as increasing interoperability and scalability). However, poor system interoperability, limited data comparability, and the need to improve data quality and integrity have been cited as major obstacles to the electronic exchange of health information in both urban and rural settings (Lumpkin, 2000). Currently, vendors of certain imaging technologies (e.g., teleradiology) have employed a common standard (DICOM) for packaging and transmitting images in their systems, while vendors of other applications are only now beginning to incorporate the federal government’s recommended standards. Accelerating the promulgation of national data standards is one element of a comprehensive plan to facilitate the adoption of EHRs, and substantial progress has been made to this end, particularly in the past 3 years. The standards developed are international in scope and tied to the National Library of Medicine’s Unified Medical Language System.
ACCELERATING THE ADOPTION OF ICT IN RURAL SETTINGS
Recent years have seen a great deal of momentum and some tangible progress toward the development of an NHII. The envisioned NHII has been defined as a set of technologies, standards, applications, systems, values, and laws that support all dimensions of the health system—personal health management, provider care delivery, population health, and research (NCVHS, 2001). More specifically, the NHII initiative is a cohesive and
comprehensive plan to design information networks comprising the following elements:
Communications technologies such as high-speed telecommunications networks, computer-based systems, and wireless systems
Data standards such as common standards for medical terminology, encoding and transmitting data, and formatting electronic documents
Application programs for EHRs, telemedicine, and patient self-management
Certain systems that relate to the underlying electronic architecture, databases for collecting and storing data, and medical knowledge sources
Values and laws to ensure appropriate regulatory oversight, consumer protection, and government support for vulnerable populations
Building the NHII is an enormous undertaking that will likely take a decade or more to complete, but the process is well under way. A detailed discussion of the many ongoing efforts related to the establishment of the NHII can be found elsewhere (IOM, 2003d; Javitt, 2004). Following is a brief summary of recent developments in four key areas: federal leadership, patient privacy laws, data standards for connectivity, and finance.
In May 2004, the White House announced a new national initiative aimed at establishing the NHII and implementing EHRs over the next 10 years (WH, 2004c). One key component of this initiative was the establishment of the Office of the National Coordinator for Health Information Technology in the Department of Health and Human Services (DHHS) to facilitate higher levels of interagency strategic development and coordination. The National Coordinator serves as the chief architect and strategic planner for coordinating federal, state, and private-sector activities directed at establishment of the NHII. The National Coordinator was tasked with providing a comprehensive NHII implementation plan to the Secretary of DHHS by July 21, 2004, followed by delivery to the President (WH, 2004c).
Patient Privacy Laws
The Health Insurance Portability and Accountability Act of 1996 (HIPAA) set standards for administrative and financial transactions and the
privacy and security of personal health information. The rules that emerged from the HIPAA regulations require that all health care providers, clearing-houses, and health plans implement these standards by the compliance date specified for each. The Administrative Simplification provisions identified data exchange standards and code sets for representing the information; compliance was required by October 16, 2003 (with the option of filing for a 1-year extension). The privacy rules establish the minimum standards required for the protection of information within an organization and among business associates, as well as stipulations for obtaining authorization for disclosure and de-identification of information. Compliance was required by April 14, 2003. The security standards govern the administrative procedures, physical safeguards, and technical security services and mechanisms for ensuring data protection using all media and for storing, maintaining, and exchanging information. These rules were just completed, and compliance is required by April 21, 2005.
Data Standards for Connectivity
In 2002, the Consolidated Health Informatics (CHI) initiative was established as part of the Office of Management and Budget’s eGOV efforts to streamline and consolidate government programs among like sectors (OMB, 2000). The CHI, with input from the National Center on Vital and Health Statistics and various private-sector standards-setting bodies, identifies data standards for government-wide adoption. Acting on advice from CHI, in June 2003 the Secretary of DHHS assumed a lead role in the promulgation of data standards for key areas, including reporting of laboratory results, digital radiology reporting, medical device communications, pharmacy communications, and clinical data communications. A great deal of standards-setting work remains to be done, and a recent IOM report provides a roadmap for additional progress in this area (IOM, 2003d). Designation of the National Center on Vital and Health Statistics as the preeminent health information policy advisory group of the federal government, the development of its vision statement for the NHII, the CHI collaboration, and the recent promulgation of some data standards have established a policy process and generated a widespread expectation that the federal government will continue to address this important issue in a thoughtful, coordinated, and strategic manner.
Some modest first steps have been taken to assist providers and communities in investing in ICT. In fiscal year 2001, more than $30 million in federal grants was available to support Indian Health Service and Alaskan health care infrastructure initiatives, including telehealth technologies (IHS, 2000). In fiscal year 2004, Congress appropriated $50 million to help small and rural hospitals invest in ICT (AHRQ, 2003a). In fiscal year 2005, an additional $50 million will be made available to communities to plan and implement local/regional health information infrastructures (AHRQ, 2004b).
Although it is too early to assess the full impact of this and the other developments described above, building the NHII has clearly become an important national priority. Below the committee identifies actions that should be taken to ensure that rural areas have an opportunity to both contribute to and benefit fully from the NHII.
CONCLUSIONS AND RECOMMENDATIONS
Building the NHII over the coming decade presents both opportunities and challenges for rural communities. As discussed above, all communities stand to derive sizable benefits from the NHII, and these benefits may be even more substantial in rural communities, where the NHII has the potential to greatly enhance residents’ access to providers and services. At the same time, however, rural communities are at risk of being left behind. Some are poorly prepared to participate in the information age, having little or no access to the Internet and populations with minimal ICT experience. Given their limited financial resources (see Chapter 5) and the small scale of rural provider organizations (see Appendix C), most rural health care systems will need financial and technical assistance to establish EHRs and secure platforms for data exchange.
Although there are challenges to be overcome, rural communities also have unique strengths to build upon and may represent excellent sites for community-based ICT demonstrations involving public- and private-sector partnerships. Rural health care systems are less complex than those in urban areas, and the scarcity of resources in rural settings provides strong incentives for collaboration among all stakeholders. Moreover, rural hospitals and nursing homes are far less likely than their urban counterparts to have made major investments in information systems in the past, so they do not confront the challenge of converting from these legacy systems to the NHII.
In this section, the committee lays out a strategy and recommendations
for ensuring that no rural community is left behind as the nation builds the NHII, and that rural communities, like their urban counterparts, have the opportunity to adopt innovations if they choose to do so. This strategy consists of six action items: (1) including a rural focus in the NHII plan, (2) providing all rural communities with high-speed access to the Internet, (3) improving the consistency of regulatory and payment policies, (4) providing financial assistance to rural providers for investment in EHRs and ICT, (5) fostering ICT collaborations and demonstrations in rural areas, and (6) providing ongoing educational assistance to rural communities so they can make the best use of ICT.
A Rural Focus in the NHII Plan
With the establishment of the Office of the National Coordinator for Health Information Technology, the federal government has assumed a leadership role in the development of the NHII over the next 10 years. To achieve this goal, the NHII Coordinator must implement a comprehensive strategy, operational plan, and budget.
If rural communities are to participate fully in the NHII, it is essential that the national planning process take into consideration the specific challenges they confront and target program activities and resources to meet these challenges. The committee believes that the involvement of rural health leaders in the development of the NHII will be critical to its successful implementation in rural areas. The initiation of an ongoing dialogue between the National Coordinator and public- and private-sector rural health leaders would also likely result in the identification of numerous opportunities to coordinate ICT development with other rural health programs and to better leverage public- and private-sector investments.
The Office of Rural Health Policy (ORHP) in DHHS’s Health Resources and Services Administration (HRSA) serves as a focal point for many rural health programs and activities at the national level. ORHP also provides administrative support for the DHHS Rural Task Force, established in 2002 by the Secretary of DHHS (ORHP, 2002). This task force of federal and state agencies involved in rural health projects is charged with stream-lining and coordinating their initiatives for better overall strategic planning and development of rural health care delivery systems. With input from ORHP and the DHHS Rural Task Force, the NHII Coordinator would be better positioned to meet the needs of rural communities.
Recommendation 8. The Office of the National Coordinator for Health Information Technology should incorporate a rural focus, including frontier areas, into its planning and developmental activities for the NHII.
The NHII strategic plan should include a component that is specific to rural and frontier areas, and this component should provide the programmatic and financial resources necessary for rural areas to participate fully in the NHII.
The Office of Rural Health Policy should be designated as the lead agency for coordination of rural health input to the Office of the National Coordinator for Health Information Technology. In providing this input, the Office of Rural Health Policy should seek the expert advice of the Department of Health and Human Services’ Rural Task Force.
High-Speed Access to the Internet
Many health-related ICT applications require access to high-speed Internet connections; however, broadband networks have not yet reached many rural communities (Wellever, 1999). Broadband networks can benefit rural communities as a whole by giving local firms direct access to customers, suppliers, and larger markets, thus making it less expensive and more efficient for firms to locate in rural areas (McMahon and Salant, 1999). In addition, these networks make it possible for residents of small towns to participate in distance education, training, and learning opportunities, a capability that is particularly important for building a health professions workforce and promoting health literacy (see Chapter 4). It is essential that a cross-sector, community-based approach serve as the foundation for developing high-speed networks in rural areas. This approach would result in coordination and collaboration across sectors, which could decrease costs and improve efficiencies related to ICT infrastructure development.
Efforts are under way to address this issue, but more needs to be done. In January 2003, the U.S. Department of Agriculture’s Rural Utilities Service expanded funding of its rural telecommunications development efforts to more than $1.4 billion, allocated through its Rural Broadband Loan and Loan Guarantee Program (RUS, 2004). The Department of Commerce has also provided grants to rural areas to facilitate the completion of broadband networks; an example is the Northeast Wyoming Economic Development Coalition, which covers five counties (Mueller et al., 1999). In April 2004, the President announced the goal of making advanced broadband networks
available and affordable to every American by 2007, including those in rural areas (WH, 2004b). The announcement emphasized the importance of partnerships among government agencies; regional commissions; state, local, and tribal governments; and industry. Some private vendors are now working with local communities to build lower-priced wireless broadband networks (Davidson, 2004). These networks use WiMax technologies that extend the wireless service radius to 30 miles, thus covering many rural areas. Additional resources should be made available as needed for the expansion of wired and wireless broadband networks to ensure that all rural communities have access to such networks by 2007. Where needed, programs should provide assistance for the internal wiring of health care provider facilities and for connection to the telecommunications infrastructure.
Rural areas face another barrier in use of the Internet—the cost associated with the use of telecommunications lines. Surcharges and administrative fees levied by local area telecommunications access (LATA) networks often make data exchange prohibitively expensive, and this is especially true when the data transmission is between geographic areas located in different LATA networks. LATA companies need to afford rural health providers a “safe harbor” from excessive surcharges and/or administrative fees.
The federal and state governments provide some financial assistance to certain rural providers for the cost of data transmission. State funds, collected from telecommunications service providers, are generally used to supplement the federal program (Haas, 2001). Reimbursement for line usage is available for rural providers through the Universal Service Administrative Company’s Rural Health Support Mechanism (with oversight provided by the Federal Communications Commission as per the Telecommunications Act of 1996).6 Yet of the $400 million in funds that has been authorized for this purpose under the Telecommunications Act, only 10 percent has been allocated because of a number of impediments (USAC, 2004). Eligibility for these funds is too limited,7 and should be expanded to include all rural providers (e.g., nursing homes, hospices, home health care providers, substance abuse treatment centers, emergency service providers,
and private for-profit providers), and be on equal footing with the Universal Service Administrative Company’s E-rate Program for schools and libraries. Currently, participants in the Rural Health Support Mechanism receive reimbursement for 25 percent of ISP charges, whereas schools and libraries receive up to 90 percent. Lastly, the administrative paperwork associated with the program needs to be simplified significantly, and outreach and education about the program expanded to attract more participants. The committee supports a thorough review of the structure and function of the Rural Health Care Support Mechanism programs as a priority for strengthening the financial resources available to rural communities.
Recommendation 9. Congress should take appropriate steps to ensure that rural communities are able to access and use the Internet for the full range of health-related applications. Specifically, consideration should be given to:
Expanding and coordinating the efforts of federal agencies to extend broadband networks into rural areas.
Prohibiting local area telecommunications access networks from imposing surcharges for the transfer of health messages across regions.
Expanding the Universal Service Fund’s Rural Health Care Program to allow the participation of all rural providers and to increase the amount of the subsidy.
Consistent Regulatory and Payment Policies
The regulatory and payment environments have a significant impact on the ability of providers to make the best use of ICT. Currently, the use of telemedicine and other ICT applications is impeded by the absence of clear and consistent definitions and requirements across (1) state governments that license health professionals; (2) health care organizations (e.g., hospitals, health plans, nursing homes) that credential clinicians for practice within the organization; and (3) major payers, such as Medicare, that establish payment policies for telemedicine services.
Some programs define the telemedicine “site of care” as the location of the patient, while others use the location of the clinician. There is much variability in state licensure requirements, with some states prohibiting any form of telemedicine encounter unless the clinician possesses a license for the state in which the patient is located, and others allowing consultations but not “treating relationships” with clinicians. Similarly, there is variability
in the credentialing policies of health care provider organizations, in part reflecting the requirements of accreditation programs such as those of the Joint Commission on Accreditation of Healthcare Organizations and the National Committee for Quality Assurance. Moreover, Medicare payment is based on the discipline and location of the clinician, who must be operating within the scope of practice under state law to receive reimbursement for telemedicine services (Wholey et al., 2003). A more comprehensive approach to Medicare and Medicaid coverage and payment policy is needed to support technology implementation.
Numerous options have been proposed for facilitating the use of telemedicine while maintaining appropriate regulatory protections. These include issuance of a national telemedicine license, with telehealth being viewed as interstate commerce (Bashshur et al., 1994; IOM, 1996; NRC, 2000; Sanders et al., 1995) and the development and widespread adoption of model state laws and regulations pertaining to telemedicine. Evaluation of these options is beyond the scope of this report, but this issue should be addressed by the National Coordinator for Health Information Technology.
Key Finding 4. Telehealth warrants special attention to facilitate use while maintaining appropriate regulatory protections. Some changes in government regulatory processes and health insurance programs may be desirable, but a detailed analysis of current practices for purposes of identifying barriers to telehealth has yet to be conducted. The Office of the National Coordinator for Health Information Technology might provide leadership and coordination for such work.
Financial Assistance for EHRs
If rural communities are to benefit from the NHII, financial assistance from the federal government will be required. Most rural health care is provided in small ambulatory practice settings and small hospitals, many of which are financially fragile and have limited access to capital for investing in EHRs (see Chapter 5). Rural health systems are also more dependent than urban systems on public payment programs, such as Medicaid, safety net grant programs for community and rural health clinics, and Medicare. In rural areas, such as Indian reservations, the federal government may also be the dominant provider of services.
The federal government should pursue multiple strategies to assist rural providers in implementing EHRs. One size will not fit all. The committee recommends a four-pronged approach.
First, the federal government should accelerate the adoption of EHRs by federally owned health care organizations serving rural areas, such as the Indian Health Service. Building on the excellent accomplishments of the Veterans Health Administration (VHA), which has already adopted EHRs (Duncan et al., 1995), emphasis should be placed on rapid deployment of this technology to Indian Health Service providers (e.g., hospitals, clinics, nursing homes). Greater efforts should also be undertaken to make the VHA’s software (i.e., VISTA) available to and usable by private-sector providers (e.g., small hospitals) in rural areas.
Second, HRSA, which administers the community health center and rural health clinic programs, should provide resources and technical assistance to these ambulatory providers for the acquisition and use of EHRs. HRSA should work collaboratively with private-sector organizations, such as the American Academy of Family Physicians (AAFP), which is sponsoring an initiative to assist small and medium-sized offices of family practitioners with the purchase and implementation of EHRs and the training and technical assistance required to incorporate the technology into their practice (AAFP, 2003). AAFP’s initiative includes both the Open EHR Pilot Project, a small-scale phase 1 project to study and promote the transition to a paperless office and the use of EHRs, and the Doctors Office Quality Information Technology project, designed to assist physicians’ offices in migrating from paper to EHRs, storing health information electronically, and using computer-generated decision support tools (AAFP, 2003).
Third, consistent with the recommendations of other IOM committees (IOM, 2002a), this committee encourages the Centers for Medicare and Medicaid Services (CMS), which administers the Medicare program, to consider providing modest financial incentives to providers for investing in EHRs. Other public and private purchasers should do the same. Financial incentives to providers should be conditional upon the acquisition and use of EHRs that possess key capabilities necessary for the provision of high-quality care (IOM, 2003c,d). The bulk of costs and behavior changes is the responsibility of providers, while the bulk of benefits accrues to patients and insurers. As a major insurer, the federal government has every reason to speed the transition to EHRs.
Fourth, all public and private purchasers should reexamine their benefit and payment policies to ensure adequate coverage and payment for telemedicine and other services delivered electronically. Adequate payment for these services will result in a more favorable return on investment in ICT. Lack of reimbursement for telemedicine services has likely been the chief
economic issue hindering their broad acceptance and utilization (Wholey et al., 2003).
Recommendation 10. Congress should provide appropriate direction and financial resources to assist rural providers in converting to electronic health records over the next 5 years. Working collaboratively with the Office of the National Coordinator for Health Information Technology:
The Indian Health Service should develop a strategy for transitioning all of its provider sites (including those operated by tribal governments under the Self-Determination Act) from paper to electronic health records.
The Health Resources and Services Administration should develop a strategy for transitioning community health centers, rural health clinics, critical access hospitals, and other rural providers from paper to electronic health records.
The Centers for Medicare and Medicaid Services and the state governments should consider providing financial rewards to providers participating in Medicare or Medicaid programs that invest in electronic health records. These two large public insurance programs should work together to reexamine their benefit and payment programs to ensure appropriate coverage of telehealth and other health services delivered electronically.
ICT Collaborations and Demonstrations in Rural Areas
The ultimate goal is to establish a national and even global health information infrastructure that allows for the exchange of patient data between authorized users (e.g., personal physicians) in a secure environment. However, the NHII will likely be built community by community, with local or regional health information infrastructures adhering to national data standards. Rural communities should be actively engaged in this developmental work to establish local networks for the exchange of data. Moreover, local NHII efforts need to be cross-linked to the information infrastructure projects of other sectors (e.g., education, agriculture) to build on existing resources and integrate new technology.
There are notable examples of community- or statewide efforts to establish data exchange networks. For example, in the private sector, the Indiana Network for Patient Care, developed with leadership from the Regenstrief Institute, is a network of 13 acute care hospitals in Indianapolis and 20 per-
cent of outpatient physician practices (Overhage, 2003). Participating organizations pay a monthly fee for access to selected electronic information that forms the basis for an “operational communitywide electronic medical record,” including reports from emergency room visits, laboratory results, admission notes/discharge summaries, operative reports, radiology reports, surgical pathology reports, inpatient medications, immunizations, and a tumor registry (Overhage, 2003). Each health care provider retains its patients’ information in its organization’s database; however, selected information in those datasets can be shared among organizations through use of a Global Patient Index (Overhage, 2003). The Indiana Network for Patient Care not only allows for the secure storage and exchange of clinical information, but also provides clinical decision support and population health surveillance and reporting. Other examples of data exchange networks include the CareScience system in Santa Barbara, California (Carescience, 2003), Winona Health Online in Minnesota (Chin, 2002), and the New England Health Exchange Network in Waltham, Massachusetts (Glaser et al., 2003). Others are at various stages of development.
Establishing community- or statewide information infrastructures requires a high degree of collaboration across the public and private sectors. There are steps that can be taken now to foster such collaboration. First, Congress should remove regulatory barriers that may impede collaboration around ICT issues in rural communities. Concern has been raised that provisions under the Social Security Act, Section 1877, and subsequent amendments (i.e., “Stark I” and “Stark II”), originally intended to restrict physicians from making referrals to laboratories in which the referring physician has an ownership or other financial stake, may have the unintended consequence of impeding collaborative arrangements between providers (e.g., hospitals and physicians) to establish EHRs (Personal communication, G. Greenberg, May 6, 2004; Jacobs, 2004). Further clarification of the intent of the law and possibly the creation of a safe harbor for ICT-related collaboration would be advisable.
In addition, the federal government should provide financial support to a limited number of rural communities for the establishment of communitywide health information infrastructures. Efforts to this end are already under way. AHRQ will be providing $139 million in grants to fund health information technology (HIT) development projects in three categories. The first is promoting access to HIT through grants to communities, hospitals, providers, and health care systems. These grants are spread across 38 states, with a special focus on small and rural hospitals and communities.
Second is developing statewide and regional networks through 5-year contracts, recently awarded to Colorado, Indiana, Rhode Island, Tennessee, and Utah. Third is establishing a National HIT Resource Center that will provide technical assistance, maintain a repository of best practices, and disseminate useful tools to help with technology adoption. The grant to develop the center was awarded to the University of Chicago (AHRQ, 2004b). Award of the HIT grants (community and statewide) requires the awardees to develop a comprehensive plan encompassing technology adoption, partnerships for interconnections, methods for overcoming barriers to adoption, staff responsibilities, technical assistance needed, an implementation timeline, budget, and measures for ongoing project evaluation (AHRQ, 2003b). The data exchange networks in rural areas are to include academic health centers and providers in urban areas.
The committee applauds these efforts, but is concerned that current funding may be inadequate to fully develop the NHII. Additional funding to rural and frontier areas will be needed to build infrastructure on a national scale. The committee encourages Congress to provide adequate resources to continue the award of grants at both the community and state levels to complete the development of the NHII. The HIT projects noted above and all new projects should incorporate a follow-on phase upon project completion that focuses on interconnections to the larger structure of the NHII. For regions with large rural areas, especially those with large frontier areas, follow-on plans may be coordinated at the state level.
Recommendation 11. The Agency for Healthcare Research and Quality’s Health Information Technology Program should be expanded. Adequate resources should be provided to allow the agency to sponsor developmental programs for information and communications technology in five rural areas. Communities should be selected from across the range of rural environments, including frontier areas. The 5-year developmental programs should commence in fiscal year 2006 and result in the establishment of state-of-the-art information and communications technology infrastructure that is accessible to all providers and all consumers in those communities.
It should also be noted that building an ICT infrastructure must be an integral component of the health system reform demonstrations recommended in Chapter 2. As discussed in Chapter 1, the committee endorses the “bottom-up” approach to health system reform proposed in the earlier IOM report Fostering Rapid Advances in Health Care: Learning from System
Demonstrations (IOM, 2003a). Chapter 2 recommended a set of demonstration projects in those communities to test alternative approaches to restructuring the health systems in rural communities to address both population and personal health care needs in a more integrated fashion, and to redesign finance and delivery system to achieve those objectives. Adequate ICT capabilities and supports will be critical to these demonstrations as well.
Ongoing Educational Assistance
Rural communities, like urban areas, are embarking on a period of enormous change. Communities will need both technical and educational assistance to make this transition smoothly and successfully. The technical challenges are sizable, but so, too, are the human and organizational issues involved.
A growing body of literature documents that human and organizational factors play a significant role in the delays being seen in the widespread adoption of ICT (Clayton et al., 2003; Perednia and Allen, 1995). Factors contributing to resistance to ICT adoption include computer anxiety (Gamm et al., 1998), increased time to enter orders and patient histories compared with paper-based methods (Krall, 1995; Sittig et al., 1999), decreased patient–physician interaction (Gadd and Penrod, 2000; Gamm et al., 1998), inability to integrate applications into the physician’s workflow (Sittig et al., 1999), and decreased educational opportunities (Ash et al., 1999). The National Advisory Committee on Rural Health and Human Services (NACRHHS, 2003) has noted that health care professional training programs have failed to incorporate technology skill development into their curricula in any meaningful way. Clinicians are forced to learn and adapt on the job, which greatly slows the diffusion of technologies for improving care. Health professionals need ongoing, lifelong technology training and skill development, with particular emphasis on telehealth technologies (Nesbitt et al., 2004).
Overcoming personal and cultural challenges to technology diffusion is possible through education and communication addressing the major influences on adoption: the relative advantages of newer over existing technologies; the degree to which technologies are perceived to be compatible with the values, experiences, and needs of their users; concerns related to the complexity of understanding and using the technologies; the degree to which providers can experiment with the technologies on a limited basis; and the observability of the results of an innovation. Each rural community will need
a plan for phasing in ICT applications, starting with a few of the most basic applications (e.g., drug interaction checking, order entry, laboratory and radiology test results), followed by applications that require more fundamental changes in care processes and relationships among clinicians and between clinicians and patients (e.g., telemedicine consultation).
Because the delivery of health care services involves many disciplines (e.g., clinicians, ancillary support personnel, technical specialists, and administrative personnel) and organizations (e.g., primary care offices, clinics, hospitals, nursing homes, tertiary care hospitals, and specialty services outside the community), it will be important to pursue a coordinated approach to technology adoption that builds on existing networks. This point is particularly applicable to rural communities. Networking8 among rural providers and with urban organizations has been central to building more stable rural health care delivery systems and addressing some of the workforce supply issues faced by rural areas. By coalescing voluntarily into cooperatives, alliances, consortia, or networks, rural providers can often reduce their costs; manage their scarce resources; and increase their bargaining position, including that related to the purchase, training, and implementation of health ICT systems (Goldsmith et al., 1997). The provider relationships developed through networks mirror the relationships needed for the electronic information sharing and data exchange associated with EHRs and telemedicine technologies. Roughly one-third to one-half of rural providers are already involved in an alliance of some sort (Moscovice et al., 2003). Continued development of these networks would more fully support the rural health care delivery system, the adoption of ICT among local providers, and interconnections with the NHII.
Strong clinical and administrative leadership will also be important to the implementation of ICT. Achieving an effective level of teamwork for technology implementation requires regular interaction, cooperation, and collaboration among the different providers involved. If urban organizations are part of the network, their senior management and clinicians must
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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