Editor's Note: The traveler on the information superhighway has several choices in reading this and other issues of Prevention Report. Before the printed version usually arrives by mail, the traveler can read this lead story on-line at the National Health Information Center's World Wide Web site (http://nhic-nt.health.org), print it out for reading later, or download the electronic file for use in another publication or form of communications. Any one of these options usually represents little or no cost to the reader--whether health professional or member of the public--and almost no cost per use for the Federal government. Most important, the content is available on demand to millions of Internet users throughout the world, making networked health information a truly powerful prevention tool.
Half of all deaths in America can be attributed to factors that we, individually and as a society, can control. This means that we as individuals must assume more responsibility for our own health and make better informed decisions. But to manage our health we need adequate and accurate information as well as motivation and support. As we enter the 21st century, many experts foresee the information superhighway as a means of meeting this need, especially as the vision of universal electronic access is realized.
Essentially, networked health information is information accessible by means of an electronic network of two or more points and capable of transmitting text, sound, graphics, and/or video. As illustrated in Spotlight, networked health information abounds on the Internet--at international, national, regional, State, and community sites--and on other types of electronic communications systems such as bulletin boards. Coming from both public and private sources, networked health information ranges from highly technical reports of scientific research findings to listings of local self-help groups.
Networked health information enhances the ability of people to communicate and expands the knowledge base available to these people, whether health professionals or consumers. In person or by telephone or even online, a parent can consult a pediatrician about recurring ear infections. The pediatrician can obtain electronic versions of clinical practice guidelines from the Agency for Health Care Policy and Research (AHCPR) and other sources; the parent can get the clinician's or the consumer version through an online service like Prodigy. Ideally, the physician and parent work as a team, with the doctor suggesting and encouraging the use of online resources.
The long-term vision calls for every individual to have access--through a computer, interactive television, or telephone--to any health information he or she needs. The expected result is improved health and a reduction in inappropriate health care utilization. The vision also calls for individuals to assume more responsibility for taking better care of themselves and their families and to make a range of decisions about medical care.
While cost-efficiency is a major driving force in greater use of networked health information, experts cite other benefits as well. Studies have shown that patients are more honest with computers: an automated screening questionnaire identified more potential blood donors with HIV-related factors in their health histories than one-on-one interviews by health care providers. This honesty gives health care providers more accurate information for treating the individual and for aggregating clinical data for broader preventive medical intervention. For example, a pattern of diarrheal infections could indicate a community water treatment problem.
For health communicators, network channels mean an opportunity to present very targeted and personalized messages and materials...to achieve the goal of getting the right information to the right people at the right time and in the right form. Audio and video magnify the power of the written word; connectivity and interactivity enhance the power of prevention via electronic communications.
Realizing this vision of online prevention, professional and patient education, and management of health and disease requires an information infrastructure that links homes, hospitals, clinics, libraries, schools, worksites, and other community settings. Increasingly, individuals and organizations at the national, State, and local level are cooperating in efforts to make even more information available, accessible, and useful.
In one case, a group of 25 churches and other community-based organizations has created a computer-based information and referral program. Its electronic directory lists public and voluntary agencies in the metropolitan area, each enjoying the benefits of a common database of clients for referral, recording, identification of unmet needs, and reporting results and costs. The National Library of Medicine has funded an urban consortium for infrastructure development in AIDS information services. In Washington and Minnesota, public/private partnerships are developing comprehensive information systems to support the delivery and funding of medical care and population-based public health activities.
At the first Networked Health Information for the Public Conference many of the principal players in this emerging communication infrastructure came together:
Other players include broadcast and print media and network providers ranging from bulletin board systems to online commercial services reaching many millions of people. (See the Partnerships '95 World Wide Web site for details: http://nhic-nt.health.org/nmp/conf.htm.)
Partnerships at the national, State, and local level are considered essential in developing the information superhighway to support the needs of public health in the future, particularly as governments and budgets shrink while health and health services inequities grow. Policymakers are calling for electronic linkages among public health and other government agencies, schools, libraries, health care organizations, and community-based organizations. When linked, these groups can better bridge the gaps between the individual, the community, and the Nation, especially in the near term
when only a minority of people have home computers and modems for networked services. By providing public access, the groups can inform and support as well as deliver services. These kinds of partnerships and provision of access are critical to achieving the long-term vision.
With so much health information traveling over telephone wires, cable, and wireless systems, the challenge becomes how to build networks that support a collaborative and inclusive vision of public health in an electronic world. A sophisticated information system describing funding resources has little value to a community agency that is not networked. The administration's vision of the National Information Infrastructure (NII) calls for schools, libraries, clinics, and hospitals to be wired by the year 2000, an objective that would mean universal electronic access to public health information resources. Together with interactive health education materials and decision support programs available online or through standalone technology, such as nutrition management software on CD-ROM, individuals will have an array of ways to be involved in maintaining their own well-being.
With the NII target just a few years away, Federal, State, and local public health agencies and nonprofit organizations have launched networked health information projects. In collaboration with the Food and Drug Administration, the National Institute of Allergy and Infectious Diseases, and the National Library of Medicine, the Centers for Disease Control and Prevention (CDC) operates the AIDS Clinical Trial Information Service and the AIDS Treatment Information Service, both databases now accessible on the World Wide Web. CDC also sponsors CDC WONDER, which enables public health practitioners to access the agency's data, and CDC INPHO, a new infrastructure that wires public health agencies, the academic community, and others. The U.S. Department of Health and Human Services' home page provides numerous links that enable agencies to serve their constituents better.
The second Networked Consumer Health Information conference (see Resources in Spotlight) will cover progress on such projects. In addition to spotlighting breakthroughs, model projects and likely developments, the conference will address some of the key issues: equitable access, quality and integrity of information, liability, security/privacy/confidentiality, and intellectual property/copyright.
Equitable access involves a debate about how much government should be involved in helping to overcome barriers such as poverty or disabilities. At issue are funding mechanisms as well as channels. Consensus does not exist about who should provide and pay for networked health information systems.
One government study described information quality in terms of the potential for information to be incomplete, inappropriate, inaccurate, or outdated. Technological advances facilitate the retransmission or repackaging of information, which raises concerns about content integrity. Data censorship raises concerns about whether people can best judge for themselves. Some public health advocates do not accept notions of "leave it to the marketplace" or "let the buyer beware."
The label "uncharted waters" applies very much to liability. Issues range from the problems of a consumer or health professional following outdated guidelines to information providers misrepresenting their qualifications. The latter becomes an increasing concern as more and more organizations join "the Net."
Security, privacy and confidentiality have long been standards of the Nation's libraries, government agencies, and other providers and receivers of information about individuals. Many believe that seekers of networked health information should have the same guarantees--but these are not built into existing systems.
Copyright laws for electronic media are still under discussion. The relative ease of copying and repackaging electronic files complicates the debate.
Getting information from the Internet has sometimes been characterized as "filling a water glass with a fire hose." Overload is a possible prognosis, forcing information users to be more selective and encouraging more collaboration among information providers.
Collaboration is the key. Former Surgeon General Dr. C. Everett Koop, in introducing the first Networked Health Information Conference, recalled that the private sector built the railroads and the government built the highway system. But he said the information superstructure is too important to leave to either alone. Without many different partnerships, the goals of access and equity, individual responsibility for one's own health and informed decisionmaking, cost-effectiveness, and well-being will not be achieved. The public health community can bring its experience in informing and educating the public into innovative activities with established partners--and with new ones.
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