Hundreds of consumer health informatics systems have been developed over the past decade and have grown in technical sophistication, from simple programs designed in a few days to advanced clinical tools built by teams of experts over several years. Topic content also varies widely, including general information and advice from physicians and nurses in areas such as nutrition, smoking cessation, and disease management, and more individualized information tailored to consumers’ responses on health inventory questionnaires. Individuals suffering from specific diseases or conditions get the chance through technology to share their experiences on electronic “bulletin boards” or “chat lines,” making these experiences available to others who may not know anyone in the same situation. The federal government provides consumers with publications both in writing and via computer, through such agencies as HHS’ Office of Public Health and Science, National Institutes of Health, and the Department of Agriculture’s Food and Nutrition Service. The government also provides health and medical information through the Internet and various commercial on-line services, as well as through clearinghouses that maintain computer databases. States and local governments also have supported consumer health informatics and have provided medical information and health articles via the Internet. The private sector, too, has played a role in disseminating health information; many health organizations, universities, insurers, and nonprofit organizations are currently involved in informatics projects. For this review, we were asked to contact consumer health informatics experts in both the public and private sectors to gain an understanding of how computer and telecommunications technologies are being used to provide health information to consumers. This inquiry included questions on the costs, potential benefits, and other issues associated with the development and use of such systems; we also examined federal, state, and local government and private-sector activities that develop and/or sponsor these projects. To address these objectives, we searched the literature to obtain and review information on the status, development, and use of informatics. We also contacted 80 consumer health informatics experts representing federal and state agencies, private health organizations, and universities. We developed a structured questionnaire and interviewed these officials at length to learn more about the development of consumer health informatics projects, obtain information on the different types of technologies used, and identify other emerging issues related to informatics. (Appendix I lists the experts interviewed.) In addition, we gathered evaluations of consumer health informatics projects from these experts and other published sources, and identified reported costs and benefits of using such technologies. Using this information and interview results, experts identified issues related to consumer health informatics and options that could help address them. We did not independently evaluate these projects; rather, we are reporting the views of the experts we interviewed. Then, in November 1995, we convened a panel—12 of the 80 consumer health informatics experts—to further discuss these topics. (Appendix II lists the panelists.) Also, we interviewed officials within HHS at the Agency for Health Care Policy and Research, Centers for Disease Control and Prevention, Food and Drug Administration, Health Care Financing Administration, National Cancer Institute, National Library of Medicine, Office of the Assistant Secretary for Planning and Evaluation, and Office of Disease Prevention and Health Promotion. In addition, we interviewed officials of the Departments of Agriculture, Commerce, and Defense; the Office of Management and Budget; and the Social Security Administration, to obtain information on the status of the Vice President’s request that HHS develop recommendations for federal activities to provide health information to consumers. Finally, we queried Internet users to obtain information on the different types of health information sources available to consumers, and the various ways that consumer health information is disseminated through the Internet. A total of 103 Internet responses were received and reviewed as part of our evaluation. Also, we observed the operation of six consumer health informatics projects, and witnessed computers and communications technologies in use providing health information to consumers. We conducted our review from September 1995 through April 1996, in accordance with generally accepted government auditing standards. Many Americans are now requesting more health care information to help manage, in concert with their health care providers, their own health. The growth in the need for health information has placed significant demand on traditional information sources. Informatics offers a new avenue through which consumer needs for information may be met. Consumers also have easier access to various technologies, including personal computers, CD-ROMs, and on-line services, allowing them to obtain health information on nearly any subject within minutes. Consumers’ high and increasing demand for health information has been demonstrated in a number of studies. One report indicates that telephone inquiries to Public Health Service’s health information clearinghouses more than doubled in the early 1990s, while mail inquiries grew by 43 percent. Another recent survey indicated that more than two-thirds of consumers have questions about their personal health, such as questions on illness prevention or disease management. Public libraries reported in 1994 that 10 percent of all reference questions are health-related, accounting for 52 million inquiries annually. Similarly, voluntary health agencies, such as the American Cancer Society, the American Heart Association, and the American Lung Association, have reported reaching 82 million potential consumers with health information, and answering over 4 million direct inquiries each year. 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. In fact, several informatics projects have been developed by consumers frustrated by their inability to find needed information for their own health conditions or those of friends or family. The need for information is particularly apparent in self-care situations, for example when dealing with one’s own minor injury or illness. According to the president of Healthwise, Inc. (a nonprofit center for health care promotion and self-care research and development), approximately 80 percent of all health care involves problems treated at home. Effective management of these problems can prevent the illness or injury from progressing to the point of needing professional intervention. The vice president for product management at the Center for Corporate Health, Inc., estimated that as many as 67 million clinical visits are unnecessary or highly discretionary, and that many of these could be avoided if the proper health education materials and decision support tools were provided earlier. For this to happen, however, consumers’ self-treatment must follow the correct self-diagnosis. If a consumer misdiagnoses his or her health problem and then goes on to “treat” it, benefits from automated dissemination of information could be negated and may even result in higher medical costs. Advances in technology make access to consumer health information easier, responding to this increasing consumer demand. As reported in 1995 by the Council on Competitiveness, 37 percent of U.S. households had computers, and that number was expected to reach 40 percent by the beginning of 1996. The use of technology in schools is also on the rise. Quality Data, Inc. annually publishes “Technology in Public Schools,” and reported that the number of computers in the nation’s classrooms reached 2.3 million in the 1991-92 school year. This figure has grown steadily, reaching about 4.1 million for the 1994-95 school year. Just within the last few years, according to the March 1996 Council on Competitiveness report, the consumer market for CD-ROMs has flourished. In 1993, 5 million were sold, for an estimated $202 million; in 1994 sales had more than quadrupled, to 22.8 million, for an estimated $648 million. In addition, the use of the Internet and commercial on-line services (such as America Online, CompuServe, and Prodigy) has grown. The Congressional Research Service reported that the Internet is the fastest growing communications medium in history. Between 1993 and 1994, the Internet network doubled in size, as it has done yearly since 1988. The Internet is estimated to reach between 15 million and 30 million people, with 1 million new users each month. Many Internet users are retrieving health information, joining discussion groups to share experiences on specific diseases, and accessing bulletin boards that provide information on medical topics. 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. For example, 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 systems have also been targeted to specific groups of people, such as those with specific diseases, as well as handicapped, rural, and high-risk populations. Other systems, such as those that provide their information through the Internet, have been designed to reach even wider audiences. Consumer health informatics can be organized into three general categories: systems that provide health information to the user (one-way communication), tailor specific information to the user’s unique situation (customized communication), and allow the user to communicate and interact with health care providers or other users (two-way communication). The kinds of technologies that provide health information to users include CD-ROMs containing health encyclopedias, on-line health articles, bulletin boards, and telephone systems automatically connected to databases that provide consumers with appointment reminders. Software packages complement the computer hardware, with products designed to help people learn how to perform specific simple medical functions, such as using a thermometer or injecting insulin. Systems that tailor information to the individual include automated systems that obtain information from the consumer about his or her general health or other health-related factors (such as family disease histories and smoking habits) and, on the basis of this information, suggest a need for preventive health procedures (such as mammograms), or identify actions to curb high-risk behaviors.