Today’s consumers are demanding more—and more detailed—health information, and are becoming more active in making medical and lifestyle decisions that affect them. The demand for health information has climbed steadily in the past 5 to 10 years. In the early 1990s, for example, mail inquiries to the Public Health Service’s information clearinghouses rose by over 40 percent, and telephone inquiries more than doubled. Public libraries reported in 1994 that 10 percent of all reference questions were health-related, accounting for about 52 million inquiries annually. Despite this interest, however, in a 1994 survey published by the Medical Library Association, almost 70 percent of the respondents reported problems in gaining access to appropriate health information. When queried, 60 percent said that they would be willing to pay for an easy way to access an integrated resource to provide such health and wellness information. The need for information is particularly apparent in self-care situations, for example when dealing with one’s own minor injury or illness. About 80 percent of all health care involves problems treated at home, according to the president of Healthwise, Inc., a nonprofit center for health care promotion and self-care research and development. Effective management of these problems can prevent the illness or injury from progressing to the point of needing professional intervention. However, consumers’ self-treatment must follow the correct self-diagnosis or benefits from automated dissemination of information could be negated and overall health could be harmed. The increasing demand for health information has driven the development of consumer health informatics systems. In fact, a number of informatics systems were developed by individuals who were frustrated by their inability to find needed information about their own health conditions or those of family members or friends. Several hundred informatics systems—using a range of technologies, from telephones to interactive on-line systems—have been developed in the past decade alone. Over half of the projects we identified were in operation for 2 years or less, or were still in the very early stages of development. Advances in technology also make access to consumer health information easier, responding to this increasing consumer demand. In 1995, as reported by the Council on Competitiveness, 37 percent of U.S. households had computers; that number was expected to reach 40 percent by the beginning of 1996. The use of technology in schools is also on the rise. According to Quality Data, Inc., the number of computers in the nation’s classrooms has grown steadily just in the past few years, reaching about 4.1 million for the 1994-1995 school year. (In contrast, about 2.3 million computers were in our nation’s classrooms in the 1991-1992 school year.) Growth has likewise been rapid in the use of the Internet and commercial on-line computer services. The Congressional Research Service has called the Internet “the fastest growing communications medium in history.” The number of Internet users has doubled in size yearly since 1988; between 1993 and 1994 that number rose from 15 million to 30 million people. Consumer health informatics is the union of health care content with the speed and ease of technology. Informatics systems provide health information to consumers in a wide range of settings. While many people access health information through personal computers in their homes, others access these systems in more public locations such as libraries, clinics, hospitals, and physicians’ waiting rooms. Informatics supports consumers’ ability to obtain health-related information through three general types of systems—those that simply provide information (one-way communication), those that tailor specific information to a user’s unique situation (customized information), and those that allow users to communicate and interact either with health care providers or other users (two-way communication). I’d like to offer some examples of each of these three general types of systems that are being used in informatics today. First, examples of providing information in one direction include on-line health-related articles, and computer software containing health encyclopedias or specific simple medical instructions, such as how to inject insulin; telephone-based systems that can be automatically connected to databases to call individuals with appointment reminders also fall into this category. Second, tailoring specific lifestyle recommendations aimed at improving one’s health can be accomplished with automated systems that request information from the consumer—via a questionnaire dealing with current health habits (such as exercise or smoking) and individual and family health history, for example. Information obtained in this way can then be analyzed, scored according to a set standard, and fed back to the user in the form of recommendations for improved health management. Finally, interactive communication is available through on-line discussion groups, which offer the chance for those seeking information on certain health topics or concerns to communicate with other users or a physician or other health care provider. Systems vary a great deal in terms of the technology employed, costs, and sponsors. The kinds of technologies used in the 78 projects we surveyed included (1) telephones and voice systems, (2) computers, software, and on-line services, and (3) interactive televisions and videotape. (Attachment 1 at the end of this statement provides a sample showing the range of projects included in our review.) The systems costs we were able to identify ranged from very little to $20 million to develop, and maintenance costs at the high end were up to $1.5 million annually (most cost information was proprietary). One factor affecting cost is whether existing equipment and personnel resources can be utilized. According to an expert from the University of Montana, a low-cost, Internet-type system was developed by students there as a class project, with the university providing the equipment. More complex systems that permit user interaction are usually among the most expensive. For example, Access Health, Inc., contracts with insurers, managed care programs, and employers to provide advice on illness prevention, disease management, and general health information to their enrollees and employees. The company employs close to 500 people, including nurses and technical support personnel; it reports that it has spent about $20 million on systems development over the last 7 years. Since informatics is a new field, only limited research has been performed to confirm its full monetary benefits. Some studies have shown, however, that informatics offers the potential to reduce some unnecessary medical services, thereby lowering health care costs. Information technologies also offer other advantages over hard-copy text material; for example, a consumer can more readily review material at his or her own pace and at the needed level of detail. The Shared Decision-making system, an interactive video program, was developed to help patients participate in treatment decisions; evaluators have also reported potential cost savings. According to its developer, the system helps educate the consumer, allowing patients and doctors to function together as a team. An evaluation of one program in this system—dealing with noncancerous prostate enlargement—found a 40-percent drop in elective surgery rates. According to the Agency for Health Care Policy and Research, potential cost savings could be substantial, as this is the second most common surgical procedure performed in the Medicare population. Cleveland’s ComputerLink—developed to help support Alzheimer’s caregivers by reducing their feelings of isolation—can also help save money, according to researchers at Case Western Reserve University, where it was developed. This is because when caregivers are provided access to such systems and other community-based services, according to the researchers, they tend to need fewer traditional health services, potentially saving taxpayers thousands of dollars. Other advantages cited by developers and system users include anonymity—increased ability to remain unknown while dealing with personal or sensitive information, allowing a more accurate health picture to emerge; outreach—improved access by those in rural or underserved areas; convenience—ability to use the system at any time, day or night; scope—increased ability to reach large numbers of people; and support—ease of establishing on-line relationships with others. In response to our on-line survey of Internet consumers, we found that consumers value support groups for many different reasons. One Internet user said he gains support and understanding from his on-line friends, who know exactly what his disease—Chronic Fatigue Syndrome—is like. Another Internet user said she obtains information electronically that she cannot easily get from other sources about what she called “the true facts from real people living the nightmare of ovarian cancer.” Similarly, a homebound caregiver of an Alzheimer’s patient described ComputerLink as her “lifeline to sanity.” Finally, an individual said he gained “immense benefit” from hearing of the experiences of fellow prostate-cancer sufferers, adding his belief that “accessing this material saved my life.” Informatics systems do not and cannot replace visits with physicians; they can, however, make such encounters more productive, for both doctor and patient. Such systems can also prepare doctors to more effectively treat certain patients. For example, doctors were able to diagnose alcoholism with the help of a pre-visit questionnaire because patients tended to be more candid with the computer, which many see as “nonjudgmental.” Specifically, in the case of one patient, doctors’ notes indicated that the patient “uses alcohol socially”; in contrast, the computer found that the patient had monthly blackouts. Likewise, a computer questionnaire identified more potential blood donors who had HIV-related factors in their health histories than did personal interviews by health care providers. While it is not difficult to find consumers and groups who endorse this technology, there are—in the opinions of the experts we interviewed—several issues raised by the rapid growth of informatics, issues that need to be resolved in the coming years. In survey interviews and at our conference last winter, the experts identified specific issues that will need to be addressed concerning the future development of consumer health informatics, and options for addressing them. The three issues identified as most significant were access, cost, and information quality. The other five issues raised dealt with security and privacy, computer literacy, copyright, systems development, and consumer information overload. (Attachment 2 shows the experts’ views on the significance of these issues.)