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Networking Health: Prescriptions for the Internet (2000)
Chapter: 5. Issues for Public Policy
« Previous: 4. Organizational Challenges to the Adoption of the Internet
Suggested Citation:"5. Issues for Public Policy." National Research Council. 2000. Networking Health: Prescriptions for the Internet. Washington, DC: The National Academies Press. doi: 10.17226/9750.
Issues for Public Policy
A variety of cultural, social, and political forces influence the ways in which health care providers, health management organizations, publishers of biomedical knowledge, researchers, consumers, and others use the Internet. By shaping the prevailing policies of the times, these forces influence not only the types of Internet-based applications that are likely to find widespread, routine use in the health sector but also the underlying technical capabilities of the Internet. Policies affecting Internet use, and the debates surrounding them, reflect fundamental beliefs about the way things work—or should work—in the United States. In this sense, these policies are points of potential conflict, where ideas about individual rights, the public good, equal access, free enterprise, and the role of government collide with material, economic, and technical realities and possibilities. The uncertainties surrounding the resolution of policy issues, combined with the organizational dilemmas outlined in Chapter 4, generate considerable doubt in regard to the technological trajectories that are likely to be pursued in the health sector and the capability of the Internet to support health applications. Clearly, the resolution of technical issues will not, by itself, enable greater use of the Internet in the health sector.1
This chapter examines six policy issues that influence the use of the Internet in support of health objectives: the protection of personal health information, access to information infrastructure, the protection of intellectual property contained in educational and reference materials, regulatory issues associated with the electronic delivery of medical services, federal support for health informatics research, and human resources.break
These topics have been addressed in several national reports in the last five years (Box 5.1), a sign of both their significance and the difficulties of resolving them. Many of these issues have implications outside the health sector; nevertheless, their importance in health applications argues for strong leadership by the health community in their resolution. The chapter describes the issues, the uncertainties they introduce to the Internet's deployment in health applications, and ongoing efforts to address them. Consistent with the charge to the committee and the expertise of the committee's members, the chapter does not attempt to offer recommendations for resolving these issues. In many cases, additional study will be required to delineate more fully the trade-offs among possible solutions and gather sufficient information to render reliable guidance. These issues will need to be resolved if the benefits of the Internet are to accrue to the health community.
Technology is, to a large extent, both the cause of and the solution to concerns about the protection of personal health information. The capability to connect health information systems to the Internet exposes personal health information to hostile attacks that can alter, delete, or divulge it (see Chapter 3). At the same time, technologies such as passwords, encryption, and firewalls offer reasonably effective means of protecting information systems and the data contained within them. Nevertheless, the effective assurance of data and service protection ultimately depends on the implementation of policies and practices within the organization (see CSTB, 1997). To whom should organizations be allowed to disclose personal health information with and without patient consent? Under what conditions may such disclosures be made? What steps must organizations take to protect personal health information from loss, unauthorized editing, or mischief? What types of security technologies and administrative policies will be considered sufficient protection?
Concerns over patient privacy are not new in the health sector. Patients and consumer advocate groups have long expressed concern about the collection, use, and sharing of personal health information data and the practices used to maintain its confidentiality. These groups view the Internet as further eroding patient privacy by making health information more easily available to a larger number of users (e.g., insurers, direct marketers, and pharmaceutical benefits managers) and more susceptible to security breaches. Health care organizations have been sensitive to the vulnerabilities inherent in the Internet and have long used private networks for data exchange, both because products and services are available to support such networks and because the organizations are confident ofcontinue
Other Reports That Identify Policy Issues Related to
Realizing the Information Future: The Internet and Beyond (CSTB, 1994). This report looked at the powerful potential of the emerging national infrastructure to ''enrich people's economic, social, and political lives . ." (p. 1). It went on to say, "Today we lack a consistent technical, legal, and business framework for the dissemination of intellectual property over networks" (p. 100). Noting the need to balance public and private interests, the report called for a fuller consideration of competing interests, particularly as they affect "decisions relating to societal equity—including access to networks and the information resources available on them" (p. 211).
Telemedicine: A Guide to Assessing Telecommunications in Health Care (IOM, 1996). Noting that "most clinical applications of telemedicine have not been subjected to systematic comparative studies that assess their effects on the quality, accessibility, or cost of health care," this report presented a framework for evaluating the practicality, value, and affordability of telemedicine. Concluding a lengthy chapter on the policy context of telemedicine, the committee noted: "The task for this committee was to develop an evaluation framework for clinical telemedicine—not to develop policy recommendations. The committee recognized, however, that policies related to licensure, malpractice, and other matters need to be considered . . . because they may affect the availability, acceptability, effectiveness, and cost of telemedicine services" (p. 115).
For the Record: Protecting Electronic Health Information (CSTB, 1997). This report looked at technical and nontechnical mechanisms and issues relating to the privacy and security of health care applications of the national information infrastructure. It led off with a chapter on the public policy context. Among other things, it said that "better protection of electronic health information will require efforts at the national level. The lack of uniform national standards for the privacy and security of health information creates particular problems for health care organizations that serve constituents in multiple states and creates additional confusion for patients regarding their rights." It then suggested that "conflicting views of data ownership and a lack of patient understanding of health data flows and of their rights to privacy and confidentiality also need to be addressed . . ." (pp. 49–50).
The Computer-Based Patient Record: An Essential Technology for Health Care (IOM, 1997). Updating and expanding the original report, published in 1991, this revised edition provides a scorecard on the implementation of the original recommendations. The original committee concluded that "computerization can help to improve patient records and that improved patient records and information management of health care data are essential elements of the infrastructure of the nation's health care system" (p. 46). The authors of the revised edition's progress report noted: "Security, privacy, and confidentiality concerns have become major barriers to widespread implementation of [computerized patient record] systems and [the] sharing [of] data. There is, as yet, no agreement on what must be done to establish the balance between appropriate use of health care data and the individual patient's rights to privacy" (p. 14).
Health Data in the Information Age: Use, Disclosure, and Privacy (IOM, 1994). This report examined the potential of health data organizations to improve health
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and the performance of the health care system, as well as issues relating to the quality of health information contained in data repositories and protection of the confidentiality of personal health information. As the report noted, "[e]xisting ethical, legal, and other approaches to protecting confidentiality and privacy of personal health data offer some confidentiality safeguards, but major gaps and limitations remain" (p. 15). The report recommended preemptive legislation to fill these gaps.
their ability to manage and protect the networks. Although some organizations have taken steps to use corporate intranets or virtual private networks (see Chapter 3 for a description of these technologies) for sharing personal health information among their affiliates, they have been reluctant to transmit such information over the public Internet because of concerns about privacy and security. Until key decision makers in health organizations are confident of their ability to protect the personal health information for which they are responsible, opportunities to harness the Internet's full potential in health care will be seriously constrained.2
Policy makers have already entered into the debate over privacy. Numerous bills have been introduced in both houses of the U.S. Congress relating to the use of medical records and personal health information (Box 5.2), but the enactment of legislation has been impeded by factors such as differences of opinion on the restrictions that need to be placed on the ability of different stakeholders (e.g., pharmaceutical companies, direct marketers, and legal authorities) to access health information. The most notable advance was contained in the Health Insurance Portability and Accountability Act of 1996 (HIPAA, P.L. 104-191), which gave the Congress until August 1999 to pass legislation regarding the privacy of individually identifiable health information. The HIPAA also directed the secretary of Health and Human Services to promulgate regulations on the topic by February 2000 if no legislation was passed by the August deadline. President Clinton announced proposed regulations in October 1999. These regulations (1) allow health information to be used and shared easily for the provision of care and payments for care, (2) establish procedures for disclosing health information without the patient's consent for purposes such as research, public health, and oversight, (3) require written authorization to use and disclose personal health information for other purposes, (4) create a set of fair practices to inform consumers about ways in which their information is used and disclosed, ensure that consumers have access to information about them, and allow patients to propose corrections or amendments to such information, and (5) require organiza-soft
Legislation Related to Health Privacy Issues
By May 1999, more than 70 bills on privacy and confidentiality had been introduced in the 106th Congress. Some of these were related to health information, others to financial information or personal information collected by companies for marketing purposes. Although obviously not exhaustive, the following three Senate and House bills attest to the political importance of confidentiality and privacy issues as they relate to health:
• S. 881 (Bennett): Medical Information Protection Act of 1999. The bill requires specified health entities in possession of protected health information to allow the subjects of the information to inspect, copy, and amend it. It directs the secretary of Health and Human Services to develop model notices of confidentiality. It also mandates (1) administrative, technical, and physical safeguards for protected health information, (2) a record of any protected health information disclosures, and (3) identification of disclosed information as protected health information. In addition, the bill prescribes guidelines for the disclosure of protected health information with respect to (1) authorizations for treatment, payment, and health care operations, (2) the individual's next-of-kin and directory information, (3) emergency circumstances, (4) certain oversight agencies, (5) public health authorities, (6) health researchers, (7) civil, judicial, and administrative procedures, (8) certain law enforcement procedures, (9) payment for health care by credit card or electronic means, (10) certain duly authorized representatives acting on behalf of a subject individual (including a deceased subject individual, or a minor), and (11) certain business sales, transfers, or mergers. Finally, it imposes criminal penalties for knowingly and intentionally disclosing protected health information and establishes civil monetary penalties for failure to comply with the act.
• S. 578: Health Care Personal Information Nondisclosure Act of 1999. The bill requires specified parties to permit an individual who is the subject of protected health information to inspect, copy, and request amendment of the information (or, if amendment is refused, to permit appending the individual's disagreement statement). It requires specified parties to maintain safeguards to ensure the confidentiality, security, accuracy, and integrity of protected health information. It also requires specified parties to maintain a disclosure record and prohibits them from disclosing protected health information. In addition, the bill requires (1) a single authorization form for each individual for disclosure in connection with treatment, payment, and health care operations and (2) a separate authorization for other purposes, including disclosure with intent to sell, transfer, or use protected health information for commercial advantage. It requires the development of model authorizations for circumstances other than treatment, payment, and health care operations. It also allows and regulates disclosure (1) to next of kin (or another person identified by the information subject), (2) of directory information, (3) regarding a deceased individual, (4) in emergencies, (5) for oversight, public health, or health research, (6) in civil, judicial, and administrative procedures, and (7) for law enforcement. Finally, the bill imposes criminal and civil penalties.
• S. 573/H.R. 1057: Medical Information Privacy and Security Act. The bill requires specified parties to permit an individual who is the subject of protected
health information to inspect and copy the information. It sets forth rules concerning (1) supplements to protected information and (2) provision of notice of privacy practices. It requires specified parties to establish safeguards to ensure the confidentiality, security, accuracy, and integrity of protected health information. It also mandates the development of model safeguard guidelines; requires specified parties to establish a record of disclosures not related to payment or treatment; prohibits specified parties from disclosing protected health information, except as authorized under this title; and allows disclosure if authorized by the information subject. In addition, the bill sets forth rules governing authorizations for the disclosure of protected information for purposes other than treatment or payment. It allows any person to disclose protected health information (1) to allay or remedy a threat of imminent physical or mental harm to an information subject and (2) if there is an identifiable threat of serious injury or death to an identifiable individual or group and other requirements are met. It authorizes disclosure to (1) a public health authority, (2) certain protection and advocacy agencies if an individual is vulnerable to abuse or neglect by an agency providing health or social services, (3) a health oversight agency, under specified circumstances, and (4) on court order, a law enforcement authority. The bill also regulates disclosure (1) to next of kin and (2) in directories of individuals admitted to a facility. It directs the secretary of Health and Human Services to report to the Congress whether written informed consent should be required and, if so, under what circumstances, before personally identifiable data can be used for medical research. It establishes the Office of Health Information Privacy, including in its duties the receiving and investigating of violation complaints and providing for the conduct of audits. It imposes criminal and civil sanctions. Finally, it amends the Privacy Act of 1974 (P.L. 93-579) to require an agency that receives protected health information to promulgate rules to exempt a system of records within the agency from all but specified provisions of that act.
SOURCE: Information derived from bill summaries contained on the Library of Congress's THOMAS system, available online at <http://thomas.loc.gov/home/thomas.html>.
tions to implement technical and administrative mechanisms to protect electronic health information. As a general rule, the regulations limit organizations to releasing the "minimum amount [of information] necessary to accomplish the relevant purpose."3
These regulations represent a significant step forward in the protection of personal health information and should reduce some of the uncertainty regarding allowable exchanges of health information and minimum levels of security protection. Other issues remain to be addressed, however, because the regulations were limited in several ways by the nature of the HIPAA legislation. First, the regulations apply only tocontinue
electronic health information—they do not apply to paper-based records, which constitute the bulk of all medical records held by provider organizations. Second, the regulations apply only to health care providers (that transmit information electronically), health plans, and health care clearinghouses (e.g., third-party administrators who process health care bills); they do not apply to the many other organizations, such as other insurers, pharmacies, and direct marketers—or consumer health Web sites—that routinely handle health information. Furthermore, the regulations leave unanswered the question of whether consumers need an explicit private right of action to enforce their privacy rights. Accordingly, the President called on the Congress to pass comprehensive health privacy legislation that addresses these issues (White House, 1999).
Further uncertainty surrounds the development of unique patient identifiers. The HIPAA requires the secretary of Health and Human Services to develop standard identifiers for care providers, health plans, and patients to streamline the electronic administration of health care benefits and payment of claims. Work on both the provider and plan identifiers has moved forward without great difficulty, but efforts to develop a patient identifier have encountered resistance because of concerns that a unique identifier might facilitate the linking of personal information from different sources, thereby eroding privacy. The Department of Health and Human Services (DHHS) has been reluctant to specify and implement a unique patient identifier before a consensus is reached on the larger issue of protecting personal health information, but it is evaluating several alternatives.4 The outcomes of these initiatives will have long-ranging effects on the health care providers, payers, and delivery systems that must implement the recommendations.
International actions may further affect the ways in which personal health information is transmitted over the Internet. The European Union (EU) Data Protection Directive, which went into effect on October 25, 1998, requires EU member states to block outbound transmissions of data to countries that do not have laws providing a level of privacy protection similar to that in the country where the data originated.5 The directive affords the people to whom the data refer a host of rights, including the right to be notified of data collection practices, to access information collected about them, and to correct inaccuracies. The directive is meant to facilitate the flow of information among EU member states, but its provisions threaten to cut off data exchanges with the United States, which has no national law governing data protection (BNA, 1998). The Clinton administration favors a safe harbor proposal that would allow firms to self-certify privacy policies and has been working with the EU to find a mutually agreeable solution to the problem. Privacy rights groups see the EU directives as an opportunity to push harder for national legislation oncontinue
privacy. The Trans Atlantic Consumer Dialogue adopted a resolution that called on the European Commission to reject the U.S. safe harbor proposal and recommended instead the establishment of an international convention on privacy protection to address public concerns about transborder data flows. Leading U.S. and European consumer organizations agree that neither the industry self-regulation nor the safe harbor proposal would provide adequate privacy protection for consumers.6 How this issue will be resolved is unclear.
Access to Information Infrastructure
The promise of the Internet in health applications is related to its ability to interconnect the diverse members of the health community—care providers, insurers, consumers, researchers, educators, and others—in a dynamic fashion that allows the sharing of information and resources in response to changing needs and affiliations. Health applications of the Internet pose particularly challenging requirements for access. First, they demand that access be widespread—extending to the point of care, whether it be a major hospital, rural physician's office, a patient's home, or a hotel room. Second, to the extent that applications such as home-based patient monitoring and telemedicine to the home become more viable, access links will need to provide high-bandwidth connections to and from the end user. Third, to the extent that the Internet is used for consumer-oriented health initiatives, near-universal access to the information infrastructure will become important to avoid exacerbating existing inequalities in the access of different population groups to health information and health care. As more health transactions move online, there will be strong incentives to ensure broad-based, universal access to the Internet for patients, providers, and administrators—particularly among disadvantaged groups, who are often those most in need of health care. Furthermore, as different technologies for high-speed (or broadband) connections to the Internet are deployed that cost more than a standard telephone line, concerns will arise about unequal access to the Internet by different population segments.
Technology and business trends will go a long way toward improving Internet access. Declines in the price of Internet service and access devices, such as personal computers, promise to make connectivity more affordable. Over the past five years, the average price of an Internet-capable computer has declined noticeably, driving further penetration of computing—and the Internet—into the home. Statistics from the U.S. Department of Commerce indicate that roughly 42 percent of all U.S. households owned a computer in 1998, and 26 percent had Internet access. These figures compare to penetration rates of 24 percent for computers incontinue
1994 and 19 percent for the Internet in 1997 (NTIA, 1999). Several companies have begun discounting the price of computers for customers who purchase a contract for Internet service. In addition, lower-cost alternatives to the computers have already begun to enter the marketplace. WebTV (now owned by Microsoft) offers a device for as little as $99 that enables users to send e-mail and access the Web through a standard television set, using a remote control or keyboard. The 3Com Corporation sells several models of the Palm Pilot, ranging in price from $100 to $700, which offer various degrees of connectivity to the Internet but less functionality than a computer. Less expensive products like these could help overcome some of the existing economic barriers to Internet access.
Despite these trends, the marketplace may not ensure equitable access to information infrastructure across demographic lines. Broadband connections to the Internet are considerably more costly than traditional telephone line access and are not available in many parts of the country—especially in rural areas that might benefit most from delivery of medical services via the Internet. In addition, many offers of discounted Internet access require consumers to accept additional advertising or to allow greater monitoring of online activities, a condition involving privacy that not all users are willing to accept. Furthermore, Department of Commerce statistics indicate a widening gap between those with computers and Internet access and those without, along a number of socioeconomic lines.7 In 1998, households at the lowest income levels were nine times less likely to have Internet access than those with incomes exceeding $75,000. Fewer than 20 percent of Americans with incomes of $25,000 or less have access to the Internet either inside or outside the home (e.g., at work), compared with almost 60 percent of those with incomes of $75,000 or more (NTIA, 1999). Caucasians were two to three times more likely than blacks or Hispanics to have Internet access from any location (e.g., home or office), and rural residents lagged their urban counterparts by several percentage points at all income levels, although the differences were most notable at lower incomes. In sum, the Department of Commerce figures reflect increased Internet access at all income levels over the past few years but show growing gaps based on income, education, and race. A similar study conducted in the emergency department of a large urban pediatric teaching hospital found similar results (Mandl et al., 2000).
Considerable public debate centers on the best way to provide universal, low-cost access to the Internet. Many observers argue that the federal government should stay out of this matter, that the marketplace will take care of consumer needs. However, telecommunications companies point out that they have little financial incentive to lay the infrastructure in locations where populations are sparse (i.e., rural areas) or property costs are prohibitive (i.e., urban areas). Consumer groups havecontinue
emphasized a need for increased pressure on telecommunications and cable companies to ensure equitable access to broadband Internet service (see CFA, 1999). Given the prevalence of mergers, takeovers, and partnerships that bring together cable, telephone, and wireless companies with Internet service providers (ISPs) to forge single entities, the issue is murky at best.8 The resolution of this debate certainly will affect the size and scope of, and the need for, special programs such as those described in the present report. Numerous strategies have been proposed for expanding consumer access to the Internet for health purposes specifically. These ideas range from encouraging health plans to offer their members (or the general public) access to online health resources and to subsidize the cost of Internet access for their members to providing such support via the Medicare and Medicaid programs, which work with populations that might benefit substantially from improved Internet access (Eng et al., 1998).
The federal government has long played a critical role in promoting universal access to basic telecommunications services. The notion of universal service was first promulgated in the Communications Act of 1934 (P.L. 73-416), the goal of which was "to make available, so far as possible, to all the people of the United States a rapid, efficient Nation-wide and world-wide wire and radio communication service with adequate facilities at reasonable charges." These words continue to provide the ideological and legal basis for numerous telecommunications practices and programs aimed at ensuring ubiquitous, affordable access. Prior to 1983, attempts to ensure universal service were pursued through AT&T's internal rate structure, which effectively subsidized the extension of telecommunications services to rural areas. With the breakup of AT&T, the Universal Service Fund (USF) was established to keep telephone service affordable in a competitive telecommunications market. Telecommunications companies operating in the United States (including local and long-distance phone companies, wireless and paging companies, and pay phone providers) contribute to the USF, and companies can draw money directly out of it to defray the cost of delivering discounted service to both low-income communities and rural areas, where the cost of providing service is high. The Telecommunications Act of 1996 (P.L. 105-125) also mandated that the USF provide support for schools, libraries, and rural health care providers.9 The Universal Service Administration Company (USAC), under the direction of the Federal Communications Commission, now operates three programs that can support Internet connections: the High Cost and Low Income Program, the Rural Health Care Program, and the Schools and Libraries Program. Each of these programs provides affordable access to modern telecommunications services for schools, libraries,continue
rural health care facilities, and consumers, regardless of geographic location or socioeconomic status.
USAC's Rural Health Care Program is only one of several programs sponsored by the federal government that subsidize telecommunications services for health care applications. Other programs are operated by the Department of Commerce's National Telecommunications and Information Administration (NTIA) and the U.S. Department of Agriculture (Box 5.3). Although these programs make significant strides toward improving the access of health care organizations and consumers to the information infrastructure, they do not necessarily provide sufficient incentives to ensure connectivity from all home and health care settings or adequately target the full range of participants in health care. For example, the NTIA's Technology Opportunities Program (TOP) provides project funding for a limited time, after which the project is expected to become self-sustaining. A 1998 survey found that 70 percent of the demonstration and access projects initially funded in 1995 were still in full operation or serving an altered or expanded function (Westat, 1999). The remaining 30 percent had either been scaled back or terminated. Lack of maintenance funding was cited as the primary threat to the sustainability of these projects. Projects funded for 21 months or longer were more likely to have expanded to serve additional end users than were short-term projects, evidence of the need for longer-term support.
Ironically, the DHHS does not, itself, have ongoing programs to ensure Internet access for care providers, consumers, or other members of the health community. The National Library of Medicine (NLM) does provide small ($30,000) grants for Internet connections to public and private nonprofit institutions (or consortia) engaged in health sciences administration, education, research, and/or clinical care and to consortia of health-related institutions. However, these grants do not subsidize the subsequent operational costs.10 In December 1999, the Clinton administration directed federal departments and agencies to take a number of steps aimed at improving access to the Internet and narrowing the gaps in access across demographic groups. The DHHS was charged, along with the Education, Labor, and Housing and Urban Development Departments, with expanding the nation's network of community technology centers to provide access to technology for low-income Americans and encourage the development of information technology applications that would enable those populations to start and manage their own small businesses (Clinton, 1999). The provision of Internet access at public sites such as libraries, schools, and community centers may suffice for some federal missions (e.g., education), but to serve health purposes adequately, connectivity must extend to all likely points of care, including homes. Many health-related inquiries are too personal to be made in a publiccontinue
Federal Programs That Support Health-Related Access to the Internet
Rural Health Care Program
The Universal Service Administration Company (USAC) supports Internet access for health care providers through the Rural Health Care Division (RHCD, formerly Rural Health Care Corporation), which was formed to ensure that health care providers in rural areas obtain the benefits of current telecommunications technology. The Universal Service Support Program established a fund of up to $400 million annually to ensure that rural health care providers pay no more than their urban counterparts do for telecommunication services, including Internet access. In particular, the RHCD aims to provide support to rural health care providers for services related to the delivery of telemedicine. Initially, the RHCD expected thousands of physicians to apply for this program. For a variety of reasons, however, the program has not been as successful as counterpart programs that support schools and libraries. In 1999, the RHCD approved and funded the first applications for physician access to the Internet through this program. On May 2, 1999, the Federal Communications Commission established $12 million as the collection level for the second funding year of the RHCD support program (July 1, 1999, to June 30, 2000). As of October 1999, the RHCD had committed total funding of only $1.2 million to 223 rural health care providers (USAC, 1999).1 Although the FCC modified the collection level, it did not revise the $400 million annual cap for the rural health care support mechanism. Among their drawbacks, the RHCD programs support Internet access by physicians but not mid-level practitioners or allied health professionals. Furthermore, the application process is burdensome, certain telecommunications companies are excluded from participation, and the program does not underwrite bandwidth above T-1 capacity. Without changes, the RHCD program cannot possibly meet its intended goals.2
Technology Opportunities Program3
The Technology Opportunities Program (TOP) is a competitive, merit-based grant program run by the U.S. Department of Commerce's National Telecommunications and Information Agency. The TOP provides matching grants to nonprofit organizations such as schools, libraries, hospitals, public safety entities, and state and local governments. The grants are intended to fund projects that improve the quality of, and the public's access to, health care, education, public safety, and other community-based services. The funds can be used to purchase networking equipment, including computers, videoconferencing systems, network routers, and telephones; buy software for organizing and processing all types of information, including computer graphics and databases; train staff, users, and others in the use of equipment and software; purchase communications services, such as Internet access; evaluate the projects; and disseminate the project's findings.
From its inception in 1994 through October 1999, the TOP had awarded 421 grants totaling $135.8 million and leveraging $203 million in local matching funds. Many grants supported projects in rural areas. Sixty-six of these grants, totaling $25 million in funding, supported health-related projects, ranging from efforts to develop a digital, wireless home health care service network, to the coordination of responses from health and emergency services to high-risk patients in the Pine Ridge Reservation, to the creation of a network linking 11 county health departments in California, through videoconferencing and data communications. Nevertheless, the TOP has been able to fund only a small percentage of the proposed projects. More than 5,300 grant proposals were submitted between 1994 and 1998, requesting $2.1 billion in funds; only 378 of these proposals were funded, using $188 million in federal funds.
Distance Learning and Telemedicine Grant and Loan Program
The U.S. Department of Agriculture's Distance Learning and Telemedicine Grant and Loan Program (DLT) was established to encourage, improve, and make affordable the use of telecommunications, computer networks, and related technologies for rural communities to improve their access to educational and/or medical services. The DLT helps rural schools and health care providers invest in telecommunications facilities and equipment to bring in educational and medical resources that might not otherwise be available in rural areas. Demand for the DLT has been high. Approximately 500 rural medical facilities will access improved medical care through linkage with other rural hospitals and urban medical centers for clinical interactive video consultation, distance training of rural health care providers, management and transport of patient information, and access to medical expertise or library resources.
The program is intended to fund projects that deliver critically needed educational and medical services in rural areas through structured, interactive educational training and/or medical professional presence over distance. It facilitates the networking of multiple sites dispersed over a large area rather than single, standalone entities. The DLT covers capital costs of acquiring and installing telecommunications hardware at schools, hospitals, and other eligible sites. It also covers other nonrecurring capital costs of establishing a distance learning and telemedicine system; software, training, and technical assistance are among the items that may be purchased. Funded projects are required to become self-sustaining through mechanisms such as user fees, tax assessments, or school budgets. Fifty-two grants totaling $13 million were awarded in 1999.
1 Detailed information on the awards is available online at <http://www.rhc.universalservice.org>.
2 Presentation by William England, Director of Operations & Systems, Rural Health Care Program, Universal Service Administrative Company, at the Emerging Health Information Infrastructure Conference (HII99), April 27, 1999, Washington, D.C.
3 The Telecommunications and Information Infrastructure Assistance program was renamed the Technology Opportunities Program in January 2000 to reflect the opportunities new technologies provide for economic advancement.
arena (e.g., a library or community center), and many health care emergencies would require rapid access to the Internet outside the normal operating hours of public facilities.
It may be possible to encourage organizations to enable this type of access or find mechanisms to pay for Internet access for health applications. For example, incentives could be designed to entice health plans (public or private) to support some of the costs of Internet access for their patients. ISPs and cable companies could be given access to USF funds (assuming they also contribute to the fund) to encourage them to expand their service markets. Programs similar to those of the Department of Agriculture and the Rural Health Care Program (see Box 5.3) that target remote and rural areas could be created for health care providers and delivery sites in underserved and impoverished urban areas. The feasibility of the USF's High Cost and Low Income Program, providing a basic level of Internet service to individuals, could also be examined. Could the same economic principle that makes telemedicine an affordable solution for prison health care also apply to home-based telemedicine services? Greater involvement by DHHS—and others—in these initiatives may be necessary to ensure that Internet access programs meet the needs of all parties in the health community, including consumers.
The laws and practices that cover the creation, storage, dissemination, and use of intellectual property shape the way in which digital knowledge resources can be used in health professional education, biomedical research, health care, and the information systems that support health care. Considerable experimentation is under way to develop new models for distributing electronic media over the Internet as the technologies for disseminating and protecting health-related information mature. These trends have implications for both the publication of such information and the practice of distance education in the health sector.
The health community has long been among the most active scientific professions in developing online resources providing access to current information (e.g., the NLM's MEDLINE, which predated similar bibliographic resources for other scientific communities), in part because of the rapid growth in biomedical knowledge. Thus, the health community (biomedical researchers in particular) has a special interest in the evolution of electronic publishing and the mechanisms by which scientists and practitioners, as well as the public, will be able to gain unfettered access tocontinue
information on research, health care, and disease. Publishers also have a special interest in the evolution of electronic publishing, which is seen as both a blessing and a curse. For example, once an electronic book is produced, the cost of distributing copies is small compared to the cost of printing and distributing the print equivalent (see Shapiro and Varian, 1999). But this very quality of electronic publishing is also its burden—publishers fear that their revenues will shrink as readers simply ''cut and paste" the information they want, rather than purchasing the rights to use it.
The remarkable expansion of Web-based publishing and the proliferation of Internet information centers, such as America Online and MEDSCAPE, have altered the expectations of consumers, health care providers, and biomedical researchers concerning their rights to use and retain information available on the Internet. These expectations sometimes conflict with publishers' controls. Technology offers a partial solution by providing the means to protect digital content, but its use can challenge fundamental notions of concepts such as fair use. For example, simple access controls can enable distributors to implement licensing agreements that restrict the use of Internet-based health information resources to a set of users or a specific IP domain. Such agreements would not permit physicians and other health care providers to deliver information or virtual library services to their patients in the course of delivering health care. Digital rights management technologies, such as those offered by Intertrust Corp., IBM, and Xerox, also enable producers to specify rules for the use of information products, but they do not necessarily ensure fair use.11
As health professions, schools, and research centers build Internet-based curriculum materials and databases, they become publishers themselves, subject to many of the concerns that commercial publishers face, and they become involved in a competitive marketplace that strains traditional agreements about the free exchange of scientific information among peers. Recently, the National Institutes of Health (NIH) proposed the establishment of PubMed Central, a repository for the barrier-free electronic distribution of life sciences research reports.12 If implemented as proposed, the site would alter the way scientific information is exchanged among colleagues, bring biomedical research reports within easy reach of consumers, and raise additional questions about the best way for universities to manage and market intellectual property. Electronic publishing—whether it be article preprints posted on PubMed Central, laboratory data deposited in international scientific databases, or a research set of health outcomes information (scrubbed of personal identifiers) distributed to colleagues from one's personal desktop workstation—challenges many existing practices. If the full potential of the Internet is to be real-soft
ized, public and private agencies will need to rethink the principles of ownership, authorship, and priority that have guided scientific communication for centuries (CSTB, 2000).
Two types of intellectual property issues arise out of attempts to use the Internet to deliver distance education, which is becoming increasingly popular in the health sector. For many years, a large group of stakeholders participated in the Conference on Fair Use (CONFU), which sponsored discussions on topics such as intellectual property protection and copyright as applied to digital images, distance learning, educational multimedia, electronic reserves, interlibrary loans and document delivery, and in-library use of computer software. The group's final report, issued in November 1998, contained voluntary guidelines covering several issues but no consensus that led to action.
The issue has been brought to the fore again by passage of the Digital Millennium Copyright Act (DMCA, P.L. 105-304), which became law in September 1998. The DMCA directed the registrar of copyright to consult with copyright owners, nonprofit educational institutions, and nonprofit libraries and archives and to submit recommendations to the U.S. Congress on how to promote distance education through digital technologies, including interactive digital networks.13 The recommendations must maintain "an appropriate balance between the rights of copyright owners and the interests of users" and may include legislative changes. The U.S. Copyright Office issued its report in May 1999.14 The fair use issue needs to be resolved in a way that enhances the ability of health professional educators to take full and fair advantage of the Internet.
The second problem area concerns the rights of teaching faculty to retain the products of their intellectual work. Traditionally, universities have allowed faculty to retain intellectual property rights (and royalties) for the textbooks and monographs they write as part of their scholarly work. But patents that result from laboratory research have been handled differently; faculty members have been allowed to retain only a portion of revenues that result from the sale and marketing of their inventions. The increasing market for computer-based learning tools and courses offered across the Internet has sparked debate over whether electronic curriculum materials should be treated as textbooks or patents. Because the production of multimedia resources and Web-based course materials often involves many staff members, some universities have declared these materials to be work for hire, such that revenues are to flow to the institution rather than to any individual faculty member. A shared-ownership approach for multimedia works, based on the patent model, has beencontinue
implemented at some universities as an alternative to the work-for-hire approach.
Several options could be pursued to resolve these issues. First, consideration could be given to the development of fair use provisions within the health domain. A set of practical guidelines and licensing exceptions could encourage and facilitate the use of information for health care while protecting the rights of the owners of that information. This approach has worked well in the educational sector, where agreement was reached on the degree to which students and researchers can reproduce copyrighted material for educational purposes.
Second, a distance education framework could be put in place that removes barriers to the delivery of instruction over the Internet. Without a set of clear, workable guidelines, schools that educate health professionals also are unlikely to develop electronic courses and learning resources that come up to the standards of the courses and resources available to students in the traditional classroom. The same can be said for the societies and associations that provide continuing medical and professional education to their members and health care organizations that wish to provide patient education programs over the Internet. Demonstrations of the practical application of the CONFU guidelines in several health settings could help assess the adequacy of the guidelines for health professions education.
Third, universities could develop a standard approach to the ownership of electronic curriculum materials that balances the rights of the institution with those of the creators of the materials and is compatible with other intellectual property policies. If the proposed PubMed Central makes access to scientific knowledge truly barrier-free for both physicians and their patients, then it could fundamentally reshape the way scientific information is brought to bear on health. However, the mechanisms for assuring the quality and scope of materials published in PubMed Central have not yet been developed. The health care community needs to take an active role in devising these mechanisms.
Congressional activity may affect the use of distance education materials. For instance, a bill in the House of Representatives, the Collections of Information Antipiracy Act (H.R. 354, Coble), proposes copyright protection for owners of collections of electronic information. The bill is modeled on EU law (the data directive) that protects those who make "substantial investment" in developing databases, giving them protection against extraction or reuse (without permission) for a 15-year period. To obtain protection under the EU law, the United States must pass equivalent protections. Opponents of the bill see the proposed legislation as an infringement of existing fair use rights and believe it will have a chilling effect on scientific research.15break
Regulations Affecting Electronic Delivery of Health Services
Various communications technologies (e.g., telephones, satellite links, and private networks) have long been used to deliver health services at a distance—that is, telemedicine. But a number of regulatory issues have impeded the expanded use of information technology for telemedicine. Ongoing issues include payment policies, especially those used in federal programs (Medicare and Medicaid); professional licensure requirements; and standards for malpractice liability, which have impeded attempts to deliver services across state lines. The difficulties that have arisen in the regulatory environment are indicative of the broad range of potential obstacles that could arise as the Internet becomes more widely used for the delivery of health services.
The lack of suitable mechanisms of payment for telemedicine sessions is a significant impediment to the use of information technology within the fee-for-service environment that still dominates much of health care. Traditional fee-for-service insurers pay for health care in accordance with specialized rules outlining the particular services that will—and will not—be reimbursed. This model stands in contrast to capitated care systems, in which providers are paid based on formulas such as the number of patients under their care rather than the individual services rendered. Providers in captitated systems have incentives to use efficacious and cost-effective approaches, without regard to specific reimbursement policies. They can be expected to view Internet-based service delivery not as competing with face-to-face service delivery but as a tool to reduce the customer service burden on their facilities and confer a competitive advantage. Hence, payment policies are not a significant obstacle to telemedicine in capitated care systems. However, private insurers that rely on a fee-for-service model will need to revisit their payment policies.
Existing payment policies within the fee-for-service framework have only begun to expand coverage into the telemedicine arena.16 Prior to the Balanced Budget Act of 1997 (P.L. 105-33), the Health Care Financing Administration (HCFA), which pays for Medicare and Medicaid services and thus has a significant effect on payment policies throughout the industry, reimbursed only consultations that occurred in real time and involved face-to-face encounters between physicians and patients (although diagnostic teleradiology and telepathology were covered). The act required HCFA to expand its coverage of telemedicine services under the Medicare program beginning in January 1999, but critics contend thatcontinue
because the new rules fail to recognize telemedicine as just another way of delivering existing health care services they make artificial distinctions between telemedicine sessions and traditional face-to-face encounters.17 Under its new rules, which are still being evaluated, HCFA will reimburse telemedicine services according to the following criteria:18
• The Medicare beneficiary (i.e., patient) must reside in—or be presented from—a designated health professional shortage area (HPSA), typically rural or inner city locations that have difficulty attracting and retaining physicians and other health professionals. HPSAs are designated based on the total number of physicians practicing in a geographic area. The rules do not distinguish between a patient's access to primary care physicians vs. specialists and may not allow for reimbursement of remote consultations by specialists in some areas.
• Services delivered through telemedicine are limited to initial, follow-up, or confirming consultations in hospitals, outpatient facilities, or medical offices. Reimbursement is not available for all the services that are reimbursable in a face-to-face encounter. Moreover, the rules do not specifically address telemedicine delivered to the home.
• Services must delivered in real time through interactive audio and video telecommunications systems. With encouragement from the Congress, HCFA is expected to consider the use of store-and-forward technologies in the future, but services delivered in this form are not currently covered. Store-and-forward may be especially valuable in locations that have limited access to affordable broadband technologies.
• The professional providing the teleconsultations must be a physician, physician's assistant, nurse-practitioner, clinical nurse specialist, or nurse-midwife. Clinical psychologists, physical therapists, occupational therapists, and speech therapists—who may be reimbursed in face-to-face encounters—may not be reimbursed for telemedicine.
• The referring professional must be a physician, physician's assistant, nurse practitioner, clinical nurse specialist, nurse-midwife, clinical psychologist, or clinical social worker. Another professional may act in place of a referring professional to present the patient to the consultant, provided that the professional is employed by the referring professional and is a practitioner as defined in the regulation. Registered nurses, licensed practical nurses, and others (including family members for home care) are not allowed to present cases to consulting practitioners.
• As specified by the Balanced Budget Act, the regulations require fees for telemedicine encounters to be shared by the referring and consulting practitioners. HCFA will make a single payment to the consulting professional, 25 percent of which is to be paid to the referring professional.break
These rules have allowed greater experimentation with telemedicine reimbursement programs. As of July 1999, Medicare teleconsultation demonstration projects in Georgia, Iowa, North Carolina, and West Virginia were allowing more than 100 hospitals to receive reimbursement for outpatient services involving specialist telemedicine. Reimbursement of telemedicine providers under the Medicaid program was ongoing in at least 11 states, with several others considering such programs. But, as outlined above, the rules do not yet address payment for all the diverse forms of telemedicine that could arise in an Internet-mediated environment. For example, they do not cover store-and-forward systems for medical images (either still or video), videoconferencing to the home, or provision of services outside designated shortage areas. Payment policies may have to be modified further to enable these applications as other technical and organizational impediments are overcome and the applications themselves are demonstrated to be efficacious and cost-effective.
A primary requirement for payment—and a current obstacle to it—is firm evidence of the efficacy of telemedicine services. A number of pilot projects have demonstrated the technical feasibility of telemedicine, but rigorous evaluations of the outcomes of care remain sparse.19 Without a better evidentiary basis and more supportive policies, institutions and providers are understandably reluctant to invest in the equipment and training needed to provide high-quality telemedicine services. Further studies are under way to scientifically evaluate telemedicine applications. The NLM is funding dozens of demonstration projects and has explicitly called for evaluations of efficacy.20 Other demonstration projects funded by federal agencies such as DHHS, the Veterans Administration, the Department of Defense, and the National Aeronautics and Space Administration may help create a stronger scientific basis on which to determine the efficacy of various telemedicine services, leading eventually to more liberal reimbursement policies.
Liability and Licensure
Use of the Internet creates a host of new issues regarding licensure and liability. For instance, it is not clear what rules and regulations control the online prescription of medications or confer credentials on remote interpreters of radiographs. Some people fear that the Internet could allow quacks to masquerade as credentialed physicians. At the same time, existing licensure and liability rules do not adequately cover current and potential Internet applications in the health sector. State-based liability for malpractice poses an additional barrier to widespread use of the Internet for telemedicine services across state lines. Under the principle of long-arm jurisdiction, any state court can claim authority over trans-soft
actions in another state if it can prove that it has jurisdiction over that transaction (Alberts et al., 1998). The Internet confounds the matter of which state has jurisdiction in the delivery of health services and information because the transaction is distributed among two or more locations. For example, if a patient undergoes a remotely managed surgical procedure at a medical center in a neighboring state, which state has jurisdiction if there is a malpractice claim—the patient's home state, the state in which the medical center is located, or the surgeon's home state? Must the surgeon be licensed in all three states? A mechanism is needed for crafting creative solutions to situations such as these.
Similarly, under the present rules, care providers—whether physicians, nurses, or physical therapists—are licensed to practice in individual states. With telemedicine or Internet-based health care more generally, it becomes practical for providers to practice across state lines. But this would be illegal, and telemedicine programs that do cross state lines must ensure that a licensed physician is located at both ends of the transaction. This practice not only raises the cost of telemedicine consultations or procedures (and all of the cost may not be reimbursed, as noted above) but also makes it difficult to implement telemedicine services in small towns that have other health professionals but lack physicians. These are often the very areas that have the greatest need for telemedicine services. Indeed, one of the reasons the telemedicine program at East Carolina University has been so successful is because it operates only within the state of North Carolina, thereby precluding the need to engage two physicians simultaneously. The university employs specially trained nurses and physician assistants in rural clinics to present telemedicine cases, helping to reduce costs and extend the reach of the telemedicine services. At the same time, local jurisdictions face strong political pressures to maintain strict licensure provisions. Allowing the interstate practice of medicine could make it easier for larger, more prestigious health care institutions to win business from local institutions, hurting the local economy.
A number of mechanisms have been proposed to address licensing concerns. The Western Governors' Association, for example, proposed several options that states could pursue voluntarily, including explicit exemptions for remote consultations under specific conditions; participation in a uniform regional licensure program that would provide a limited license valid in any of the participating states; or institutional or network licensure for all network physicians (Gilbert, 1995; WGA, 1995). An alternative that has been proposed is the development of model legislation for encouraging uniformity in state licensing rules (IOM, 1996). A more recent report from the Southern Governors' Association called for continued examination of the licensure issue to develop a strategy forcontinue
evaluating interstate licensure (Southern Governors' Association, 1999). Clearly, continued effort is needed in this area.
The Congress and executive branch agencies continue to express interest in telemedicine. The Information Infrastructure Task Force and the Joint Working Group on Telemedicine are chartered to consider telemedicine applications. Accordingly, the Congress has begun to consider corrective legislation in some of the pertinent areas (see Box 5.4). Other groups, too, have begun to address regulatory issues associated with telemedicine. The Southern Governors' Association, for example, identified payment and licensure as two of the primary impediments to telemedicine and called for the establishment of a national licensing system, although not necessarily one run by the federal government (Southern Governors' Association, 1999). Regardless of the particular mechanisms used, it is clear that regulatory barriers such as liability and licensure need to be remedied before the Internet can be exploited fully to expand the availability of health care.
Federal Support for Health-Related Information Technology Research
The combined efforts of both private and public organizations will be required to ensure the robust development of health care applications of the Internet. To date, federal health agencies have exhibited uneven interest in pursuing Internet-based applications or in funding information technology research that could support health applications. By comparison, the Department of Defense and the Veterans Administration—both of which operate large health care delivery systems but are not federal health agencies—have invested considerable resources in the development of telemedicine programs and infrastructure for sharing patient health records.21 Some entities within the DHHS, most notably the NLM but also other elements of the NIH and the Agency for Healthcare Research and Quality, have invested in research on health-related applications of computing and communications technologies, but DHHS itself has not made use of the Internet in health-related activities a priority. As one DHHS official noted, the department has considerable expertise in information technologies, but that expertise is dispersed throughout its many agencies, with no formal mechanisms for cross-fertilization and exchange of ideas. No clear advocate exists within the DHHS for Internet-based applications.22 As a result DHHS and its constituent agencies sometimes lag behind the institutions they serve (e.g., they do not accept Medicare claims via the Internet) and sometimes mirror the same conservative approach that is characteristic of many health care organizations. For example, HCFA's strategic plan for information systems, dated July 1998,continue
Legislation Related to Telemedicine
A number of bills related to telemedicine were introduced in the 106th Congress. Among those most relevant to the present report are the following:
• S. 770: Comprehensive Telehealth Act of 1999. This bill would provide payment under the Medicare program for telehealth services and for other purposes. It amends the Balanced Budget Act of 1997 with respect to Medicare reimbursement of telehealth to (1) include reimbursement for store-and-forward technologies; clinical psychologist and physical, occupational, and speech therapist practitioner services; and items and services covered under Medicare part B (Supplementary Medical Insurance) that are provided via telecommunications systems, (2) extend telehealth coverage to all rural areas (currently, only those designated as health professional shortage areas under the Public Health Service Act are covered), (3) allow any health care practitioner acting on instructions from the referring physician or practitioner to present the Medicare beneficiary to the consulting physician or practitioner for the provision of items and services, (4) prohibit the referring physician and the practitioner from receiving any reimbursement for such presentation other than the payment that the referring physician shares with the consulting physician, and (5) provide that payment for items and services shall include payment for all current procedural terminology billing codes covered under Medicare. It also directs the secretary of Health and Human Services to study, and report to the U.S. Congress on, issues associated with cross-state licensure of health care providers (e.g., numbers of cross-licensed practitioners, status of reciprocal agreements, and state-led efforts to ease licensure burdens) and to provide specified financial assistance to eligible telehealth networks to expand access to health care services for individuals in rural and frontier areas. The bill was referred to the Senate Finance Committee for consideration in April 1999. No further major action had been taken as of February 2000.
• H.R. 1344: Triple-A Rural Health Improvement of Act of 1999. This bill would promote and improve access to health care services in rural areas. Title V amends the Balanced Budget Act of 1997 with regard to telehealth services, among other changes, to (1) extend Medicare reimbursement for such services to all rural Medicare services, including services by physical, occupational, and speech therapists, (2) revise related payment methodology, and (3) add congressional reporting requirements pertaining to the telehealth services program. It also changes the name of the Joint Working Group on Telemedicine to the Joint Working Group on Telehealth and establishes the mission of the working group, among other things, as identifying, monitoring, and coordinating federal telehealth projects and programs. The bill directs the secretary to provide specified financial assistance for expanding access to health care services for individuals in rural frontier areas through the use of telehealth. The bill was referred to the Committee on Ways and Means and the Committee on Commerce in March 1999. As of February 2000, no further action had been taken.
mentions the Internet only twice in passing—despite the report's focus on enhancing timely access to information for a variety of users (HCFA, 1998).
Some signs of change are visible. Since issuing its strategic plan for information technology, HCFA has revised its security policy to allow Internet-based exchanges of information among its own entities after the information has been received from care providers and health plans. HCFA also is sponsoring an ongoing pilot program to compare several different alternatives for Internet-based submission of claims. Depending on the findings of the pilot study and the results of a cost-benefit analysis of claims transmission, HCFA will decide whether to allow Internet transmission on an operational basis.23 The Centers for Disease Control and Prevention (CDC) recently initiated a project to use the Internet as part of a Health Alert Network to detect and respond to bioterrorist attacks, although some staff contend that this project is significantly underfunded.24
Federal health agencies have played only a limited role in supporting research and development (R&D) for new Internet-based capabilities. Many R&D and demonstration projects have been funded by the NLM and other NIH institutes, but investigations of new computing and communications technologies that are motivated by health-related goals have been only a minor element in the portfolio of the U.S. biomedical research community. Indeed, the biomedical research community in general, and the NIH in particular, have been accused of failing to provide their fair share of support for fundamental research in information technology, especially in comparison with other mission-oriented federal agencies (PITAC, 1999). Of the $2.3 billion spent by the federal government on computer science research in 1999, just $120 million came from DHHS, and none came from the Department of Veterans Affairs (Table 5.1).25 The Commerce, Defense, and Energy Departments and the NSF each funded more computing research, despite the fact that DHHS's overall research budget of $13 billion exceeds the research budgets of the four other agencies combined.26 This funding imbalance provides further evidence that federal health agencies have been far less active than their counterparts in the education, defense, scientific, and library communities in pursuing initiatives related to the Internet.27
The reasons for the comparative lack of support for computer science research within the DHHS are manifold, but perhaps the underlying problem is that the department as a whole has not embraced information technology (IT) as fundamental to its mission. Federal agencies that have allocated major portions of their R&D budgets to fundamental IT research tend to view IT as an integral part of their particular missions, whether national security, scientific research, or industrial competitiveness. Manycontinue
TABLE 5.1 Estimated Federal Funding for Research by Selected Agencies, 1999
(millions of $,
% of total)
Computer Science (millions of $, % of total)
Computer Science Research as % of Agency's Research in All Fields
12,982 (39.3)
4,089 (12.4)
2,655 (8.0)
All federal agencies
32,992 (100)
2,255 (100)
SOURCE: National Science Foundation (2000), Table C-22.
discoveries funded by DOD, DOE, and NSF have found their way into systems applied in the health disciplines. Almost all of DHHS's research funding is obligated to biological and medical sciences; IT is seen primarily as infrastructure to support these other activities. A recent NIH report on biomedical information science and technology recognizes the importance of computing in biomedical research (NIH, 1999), but it assumes that computer science is a source of tools for enabling biomedical research rather than a field of intellectual inquiry worthy of further investigation by biomedical researchers. Until government and industrial research organizations see the health disciplines as a potential source of innovation for new information technologies, fundamental informatics research is not likely to emerge from the traditional biomedical sciences; instead, health informatics research probably will continue to emphasize demonstration projects and applications.
There are several arguments for involving health agencies more closely in information technology research that is motivated by health needs. As noted throughout this report, IT is increasingly critical to the continued success of the nation's health enterprise. Achieving the goal of promoting a healthy citizenry—as well as assuring equitable access to affordable, high-quality health care—is likely to depend on the effective use of new and emerging information technologies, including the Internet. Although the capabilities required of the Internet for health applications do not differ significantly from those for applications in other areas where the government has a mission, research programs motivated by health needs probably would emphasize characteristics and capabilities that would not otherwise receive sufficient attention but that could be widely applicable, just as earlier work in expert systems that was motivated bycontinue
health needs resulted in important advances that have proven widely applicable (Box 5.5).
Efforts to involve the DHHS and its constituent agencies more closely in Internet-related research will require careful thought. Structuring mission agency research programs in information technology is vexing, especially given the history of successful research support by the DOD and NSF.28 The DHHS could initiate its own network research program, but it would most likely need to coordinate its activities with other agencies to avoid unnecessary duplication. Lack of experience could be a barrier to this approach; the department has not been active in basic network (or computer science) research for some time, so it may lack the ability to identify relevant and challenging research areas, to select promising proposals, and to manage the research. An alternative approach would be for DHHS to encourage and foster collaborative R&D between health informatics investigators and technical experts in communication and information technologies who are actively engaged in networking R&D. This approach is more likely to lead to solutions that advance the information technology infrastructure in general and less likely to strand health informatics in an isolated technological corner.
Workforce Issues
If government, health care organizations, academic institutions, and professional groups need to attract more effective leaders in the strategic uses of information technology, where will they find them? The number of individuals who understand both the biomedical milieu and the technologies relevant to computing and the Internet is remarkably small. The lack of trained individuals at the interface may also help to explain why the biomedical community has lagged other fields in understanding and adopting computing and communications technology, especially when direct use by health professionals is required. Although the NLM has funded graduate training programs in informatics for more than two decades and some computer science departments and library schools have set up programs to train health technology specialists, the supply of medical information scientists and professionals from these programs does not meet the demand. Directors of the current medical informatics training programs find that their graduates are highly sought after by industry (e.g., the pharmaceutical and health information system industries), health care organizations (e.g., managed care groups, hospitals, and multispecialty practices), and academic informatics groups with training or research missions.
The problem is not necessarily unique to health care computing. Companies in all sectors of the economy report difficulties in attracting andcontinue
Medically Motivated Research on Expert Systems
The health community played an important role in the rise of expert systems, which are software environments that analyze data and give advice based on the internal encoding of human expertise (Duda and Shortliffe, 1983). Although early work involved applications in a large number of fields, work on medical expert systems starting in the 1970s had a particularly important impact. This work not only developed technologies and systems that were beneficial to health care and biomedical research but also pushed the frontiers of computer science, developing new knowledge and technologies that could be incorporated into systems for a range of other applications. The medical focus of this work uncovered real-world problems that could be solved only through fundamental computing research.
The real-world issues that arise in medicine pressed the limits of existing software technologies in challenging ways (Clancey and Shortliffe, 1984). For example, medical applications required new approaches to managing and modeling uncertainty—specifically, the uncertainties associated with causality, diagnosis, and treatment. Biological systems were not as well understood as the engineering systems being analyzed by expert systems at the time. Furthermore, because of the diverse types of data that must be considered in diagnosis and the complexity of patient records, medical expert systems could not rely on a simple question-and-response approach to data gathering in support of decision making (an approach that suited many simpler systems). Hence, medical informatics researchers pioneered the integration of expert systems with large databases, such as computer-based medical records. The complexity of medical decision making and the difficulties involved in embedding decision-support tools into the work flows of practicing medical professionals drove further advances in the representation of large and complex knowledge bases and acceptable modes of interaction with users. The work simultaneously forced the community to take a fresh look at the psychological underpinnings of human problem solving in medicine, leading to productive collaborations among physicians, cognitive scientists, and computer scientists.
Ultimately, many of the techniques developed by the medical computing research community, generally with funding from the National Institutes of Health (NIH) or the predecessor to the Agency for Healthcare Research and Quality (AHRQ), were adapted for use in other application areas. In fact, during the 1980s, interest in expert systems soared, largely in areas outside of medicine (Computer Science and Telecommunications Board, 1999a). It is clear that the results of early NIH- and AHRQ-supported research in this area had a major impact on corporate America and the economy in the decades that followed (Feigenbaum et al., 1988)
Ironically, the adoption of expert systems in health care has been slower. Only now is an infrastructure, culture, and health-financing climate emerging that is likely to allow expert systems to have a substantial impact in the clinical setting. The recent emphasis on the implementation of clinical guidelines, reduction in practice variations, and adoption of evidence-based practice has made expert systems seem more attractive. In addition, the introduction of electronic medical records, distributed computing, and networking within institutions has made it possible to integrate decision-support tools in ways that do not require the stand-alone consul-
tation model typical of the earlier medical expert systems. Thus, the true payoff, in terms of the mission and goals of NIH and AHRQ, will have occurred 25 to 30 years after they began to support research in this area, although there have been interim spin-offs in other areas. If the biomedical research agencies of the 1970s had demanded a 2-year turnaround time for their investments in information technology research, the work that has produced so many benefits today never would have been initiated.
retaining sufficient numbers of information technology workers. A recent report by the President's Information Technology Advisory Committee (1999) contends that the supply of information technology workers does not meet the demand in almost all segments of society.29 The Computer Science and Telecommunications Board of the National Research Council has been charged by the Congress to more fully evaluate the issue.30 As the advisory committee report argues, ''It is crucial that we produce a continuous supply of well-trained, high-quality professionals in engineering and computer and information science, not merely skilled users, but researchers, creators, and designers of advanced technology" (PITAC, 1999). As with information technology fields in general, niche areas requiring expertise in health care, biomedicine, computing, and communication also appear to be undersupplied. There are important scientific issues to address, practical systems to be built, and strategies to be put in place. Health care will be constrained until there are many more individuals with these combinations of talents.
One option for addressing this concern is to expand educational opportunities in health-care computing and communications. Existing training programs in health informatics could be expanded, and new emphases or tracks could be developed in related disciplines. Alternative training tracks in areas of application ranging from clinical medicine and nursing to bioinformatics and health system management also could be developed. At the same time, educational opportunities could be created within schools of the health professions and computer science departments. Beyond such training programs, which would be designed to develop a cadre of researchers who operate at the nexus of health and computer sciences, initiatives could be taken to infuse some degree of informatics training throughout the health sciences curricula. Health professionals need to become part of the information culture that will define the century ahead, and their educational opportunities, in both professional school and continuing education programs, must be responsive to that need. Such training needs to emphasize areas of overlap amongcontinue
health care, biomedicine, computing, and communications—not simply computer literacy as traditionally, and narrowly, construed.31
As this chapter illustrates, the availability of useful information technologies is not enough to ensure their effective application in health care. Myriad policy issues will most likely need to be resolved concerning patient privacy, access to health care and Internet services, intellectual property protection, payment mechanisms for telemedicine, and human resources. The effective implementation of new information technologies in complex environments such as the U.S. health care system will require vision, commitment, and leadership at the highest levels; a well-funded research agenda; effective policies for developing the necessary workforce; and a grassroots community of capable participants. To make decisions related to Internet technologies in health and health care, public and private policy makers need sophisticated analyses and information that goes beyond traditional reporting on a narrow set of facts. The issues are emotionally and politically charged. Their resolution will require the concerted efforts of many public and private sector organizations, including government agencies, companies, and professional associations. Without deliberate, sustained action, the fundamental conflicts seen in these policy debates will keep the Internet from fulfilling its promise in health care.
Alberts, R.J., A.M. Townsend, and M.E. Whitman. 1998. "The Threat of Long-Arm Jurisdiction to Electronic Commerce," Communications of the ACM 41(12):15-20.
Appavu, S.I. 1997. Analysis of Unique Patient Identifier Options. Report prepared for the Department of Health and Human Services, November 24. Available online at <http://www.ncvhs.hhs.gov/app0.htm>.
Bureau of National Affairs, Inc. (BNA). 1998. "EU Privacy Directive Will Take Effect Even Without Implementing Legislation," Electronic Commerce and Law Report, November 17. Available online at <http://zeus.bna.com/e-law/articles/top0335.html>.
Clancey, W.J., and E.H. Shortliffe, eds. 1984. Readings in Medical Artificial Intelligence. Addison-Wesley, Reading, Mass.
Clinton, W.J. 1999. Narrowing the Digital Divide: Creating Opportunities for All Americans in the Information Age. Memorandum to executive departments and agencies, December 9.
Computer Science and Telecommunications Board (CSTB), National Research Council. 1994. Realizing the Information Future: The Internet and Beyond. National Academy Press, Washington, D.C.
Computer Science and Telecommunications Board (CSTB), National Research Council. 1997. For the Record: Protecting Electronic Health Information. National Academy Press, Washington, D.C.break
Computer Science and Telecommunications Board (CSTB), National Research Council. 1999a. Funding a Revolution: Government Support for Computing Research. National Academy Press, Washington, D.C.
Computer Science and Telecommunications Board (CSTB), National Research Council. 1999b. Being Fluent with Information Technology. National Academy Press, Washington, D.C.
Computer Science and Telecommunications Board (CSTB), National Research Council. 2000. The Digital Dilemma: Intellectual Property in the Information Age. National Academy Press, Washington, D.C.
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Duda, R.O., and E.H. Shortliffe. 1983. "Expert Systems Research," Science 220:261-268.
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1. As a reviewer of an early draft of this report noted, issues other than technology, organizational uncertainty, and public policy will determine the degree to which the Internet finds application in the health sector. The Internet must be applied properly to create solutions that work in health applications before wide adoption can be expected. The Internet has been accepted by the public as a tool for gaining insight into illness and health issues because it delivers value. Clinicians use the World Wide Web for MEDLINE searches because they obtain some value from it. On the other hand, clinicians do not use the Internet to deliver care because valuable, usable, affordable, and practical Internet-based solutions have yet to be built. In other words, public policy is a very important factor in the acceptance of Internet technology in biomedicine and health care, but it may not be the first hurdle or the highest.break
2. One of the primary benefits that could be lost because of concerns over privacy and security is the capability to compile comprehensive health records of individual patients from a number of different sites at which they were treated. At present, personal health information usually resides at the health care provider organization. For many people, there is no comprehensive health record that merges information from numerous care sites, a gap that can compromise the quality of care received subsequently. Such longitudinal records also would have value in public health and health services research.
3. The text of the proposed regulations, as well as a summary of their contents, is available online at <http://aspe.hhs.gov/admnsimp/>.
4. For additional information on the privacy implications of universal health identifiers and standards-setting activities in this area, see Appavu (1997), CSTB (1997), and National Committee on Vital and Health Statistics (1999).
5. The full title of the directive is Directive 96/9/EC of the European Parliament and of the Council of 11 March 1996 on the Legal Protection of Databases, 1996 O.J. (L77) 20. The full text of the directive is available in NRC (1999), Appendix D.
6. See <http://www.epic.org>; main news feature (accessed May 5, 1999). For information on the safe harbor proposal, see <http://www.ita.doc.gov/media/419data.htm>.
7. This gap has been characterized as a "digital divide" between "information haves" and "information have-nots." See NTIA (1999).
8. The Computer Science and Telecommunications Board (CSTB) of the National Research Council has a project under way to examine technology, business, and policy issues affecting the deployment of broadband technologies for the so-called "last mile" to the home. Additional project information is available online at <http://www.cstb.org> and at <http://www.nationalacademies.org,> under the heading "Current Projects."
9. The 1996 act was the first to codify the notion of universal service (Mueller, 1997).
10. The NLM grants cover gateway and associated connection hardware; internal access equipment, such as personal computers and local area network costs, are expected to be provided by the institution(s). In 1999, seven awards were made for $232,000. The NLM also has awarded approximately $6.7 million to nonprofit health centers since 1996 for telemedicine and Next Generation Internet projects. Additional information on NLM's infrastructure programs is available online at <http://www.nlm.nih.gov/ep/connect.html,> <http://www.nlm.nih.gov/research/telemedinit.html,> and <http://www.nlm.nih.gov/research/ngiinit.html.>
11. For information on Xerox's rights management technology, see Gotcher (1999). Information on Intertrust's products is available at <http://www.intertrust.com>.
12. Information on this announcement is available online at <http://www.nih.gov/welcome/director/pubmedcentral/pubmedcentral.htm>.
13. The DMCA brings the United States into closer compliance with the World Intellectual Property Organization (WIPO) treaty. It has numerous provisions. First, it assigns liability to online service providers for acts of subscribers who infringe on the intellectual property rights of others. Universities, some of which have medical schools, are determining how best to comply with the act in a way that enables them to qualify for liability limitations. Second, the DMCA outlaws the circumvention of technical protection systems. Exceptions to the act are permitted for educational fair use, reverse engineering to support interoperability, protection of personal privacy, and security testing. Third, the DMCA required the U.S. Copyright Office to determine whether any adverse effects on fair use had been observed after a 2-year moratorium.
14. See U.S. Copyright Office (1999), available online at <http://lcweb.loc.gov/copyright/cpypub/de_rprt.pdf>.
15. Concerns regarding the possible effect of the EU Directive on scientific research are discussed in a 1999 report from the National Research Council. See NRC (1999).break
16. Blue Cross-Blue Shield plans in Iowa, Kansas, and Montana have already developed payment policies for some forms of telemedicine, and North Dakota has announced payment plans that include telemedicine, but even these policies may need to be revised as new applications emerge (Goldberg, 1999).
17. For further elaboration on these points, see Tracy et al. (1999).
18. This summary of coverage rules is derived from Goldberg (1999) and from HCFA (1999).
19. For a discussion of the history and challenges of evaluating telemedicine applications, see Institute of Medicine (1996) and Strode et al. (1999).
20. Additional information on the NLM's telemedicine programs, including descriptions of funded projects, is available online at <http://www.nlm.nih.gov/research/telemedinit.html>.
21. The Department of Defense has investigated technologies for remote treatment of soldiers and developed telemedicine systems for military personnel and their families, and the Veterans Administration has developed technologies for sharing medical records among its health care facilities. In addition, NASA has invested in technologies for remote consultation and treatment of astronauts.
22. Margarate Hamburg, DHHS, presentation to the committee on March 1, 1999, Washington, D.C.
23. Further information on the pilot can be obtained from either <http://www.wedi.org> or <http://www.afecht.org>.
24. William Yasnoff, associate director for science and acting director, Information Network for Public Health Officials in the CDC Public Health Practice Program Office, in his presentation to the committee on March 1, 1999, estimated that $200 million would be needed, in addition to the $28 million already appropriated, to get the Health Alert Network up and running.
25. Of the $120 million in computer science research funding from DHHS, $110 million came from the NIH and $10 million came from the AHRQ.
26. In 1999, research funding for the Departments of Defense, Energy, and Commerce and for the NSF totaled $4.1 billion, $4.1 billion, $808 million, and $2.7 billion, respectively. These figures include funding for basic and applied research but not development (NSF, 2000, Table C-22).
27. Thomas Kalil, National Economic Council, presentation to the committee on March 1, 1999, Washington, D.C.
28. Two forthcoming reports from the CSTB will address issues of structuring federal and nonfederal support for mission-driven information technology research: Meeting Society's Needs: Expanding the Scale and Scope of Information Technology Research and the final report of the CSTB Committee on Computing and Communications Research to Enable Better Use of Information Technology in Government. For additional information on these projects, see <http://www.cstb.org>.
29. Gauging the supply of and demand for information technology workers is a difficult task, and several analysts have noted faults in data given out by industry groups and the Department of Commerce. The CSTB has initiated a study of information technology workers that is expected to shed more light on this subject.
30. Information on the CSTB project workforce needs in information technology is available online at <http://www.cstb.org>.
31. Insight into the scope of an expanded definition of computer literacy can be gleaned from a report by the CSTB (1999b).break
Next: 6. Conclusions and Recommendations »
Networking Health: Prescriptions for the Internet Get This Book
Consumer health websites have garnered considerable media attention, but only begin to scratch the surface of the more pervasive transformations the Internet could bring to health and health care. Networking Health examines ways in which the Internet may become a routine part of health care delivery and payment, public health, health education, and biomedical research. Building upon a series of site visits, this book:
Weighs the role of the Internet versus private networks in uses ranging from the transfer of medical images to providing video-based medical consultations at a distance.
Reviews technical challenges in the areas of quality of service, security, reliability, and access, and looks at the potential utility of the next generation of online technologies.
Discusses ways health care organizations can use the Internet to support their strategic interests and explores barriers to a broader deployment of the Internet.
Recommends steps that private and public sector entities can take to enhance the capabilities of the Internet for health purposes and to prepare health care organizations to adopt new Internet-based applications.
Front Matter i–xx
1. Overview and Introduction 27–56
2. Health Applications of the Internet 57–131
3. Technical Challenges 132–177
4. Organizational Challenges to the Adoption of the Internet 178–201
5. Issues for Public Policy 202–234
6. Conclusions and Recommendations 235–268
Appendix A: Site Visit Summaries 269–313
Appendix B: National Library of Medicine Awards to Demonstrate Health Applications of the Next Generation Internet 314–333
Appendix C: Biographies of Committee Members 334–341
Appendix D: Individuals Who Participated in Site Visits or Briefed the Study Committee 342–344

redpajama_set_name: RedPajamaCommonCrawl