New telecommunications tools could improve well-being, but consumer protections are needed.
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After her first child was born in 1989, Jean Hoffman-Anuta suffered a heartbreaking series of disappointments. Six times she got pregnant, only to suffer miscarriages in the first trimester. Unwilling to accept that she could not have another child, Hoffman-Anuta ventured onto the Internet and soon found herself reading articles about drug therapies for recurrent pregnancy loss on the National Library of Medicine's "Grateful Med" research system. After consulting with the author of one article who happened to work near her Millersville, Md., home, she underwent treatment. Soon thereafter, she and her husband welcomed a new son into the family. "Grateful Med was a godsend to our family," says Hoffman-Anuta. "Every American should have the right to explore the latest medical information, as should our health professionals." More and more people like Hoffman-Anuta are finding that computer-based communications can be a powerful new tool for healthy living. For professionals, digital techologies provide new opportunities to consult with colleagues, search resources such as the 15 million books and journal articles in the National Library of Medicine, and review databases that can give clues about trends in public health. For individuals, the new information tools offer opportunities to consult with professionals who might be unavailable for office visits, to collect consumer information from government agencies and service organizations, and to share experiences with other individuals. Not only can we now do all this, we must. Cost-conscious health-plan administrators are limiting the time people can spend with health professionals. Patients are being sent home from hospitals more quickly than in the past. And more clinical functions are being delegated to nurses and even desk clerks. In this hurried-up environment, new communications technologies are enabling individuals to arm themselves with sufficient information to be smart consumers of health services, get answers to their questions, and find emotional support. |
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Health information online
There is no lack of information. The National Health Information Center, a government-backed service, lists 1,100 organizations and government offices that provide health information upon request, many over the Internet. "These technologies let us reach greater numbers of people at less expense and in less time," says Jody Bolcik, a technical information specialist at the center.
Besides helping professionals to stay current in their specialities and exchange information about patients, technology is starting to empower consumers to assume more control over their own health care. By connecting to the Agency for Health Care Policy and Research's website, for example, individuals can find easily understandable reports on medical technology, poison control data, and medical conditions ranging from sexually transmitted diseases to depression. Eventually, they will be able to review "report cards" that give comparative information on health plans' abilities to provide high-quality, accessible services.
Technology also can be used to help patients who have trouble managing on their own but aren't ready to enter hospitals or nursing homes. At the Hays Medical Center in Hays, Kan., nurses contact such patients—typically people with diabetes or mood disorders that require medication taken on carefully established schedules—using a cable-TV link between the center and these homes. With these regular "visits," some patients have been able to avoid institutionalization.
Self-help
Equally important, computer networks enable people to help themselves and each other, rather than relying exclusively on experts. "Many self-helpers can use online discussion groups to talk to experts," says Dr. Tom Ferguson, an Austin, Tex., consultant and author of the book, Health Online. "You can trade email with researchers who are developing new treatments for a medical or psychological condition that affects your child. . . . You can join an online self-help group for people who share your concern. . . . You can use your online communications as a form of psychotherapy."
Self-help groups have become the most widely used of all networked resources, according to the Institute of Electronics and Electrical Engineering. The number of person-to-person contacts over computer networks exceeds the number of person-to-database contacts by a ratio of nine to one, the institute says.
In Cleveland, for instance, a group of volunteer agencies operates networks for AIDS patients and Alzheimer's disease caregivers over a community computer network called Cleveland FreeNet. Supervised by a nurse, the "ComputerLink" system includes an electronic encyclopedia of data about disease, caregiving issues, and services. It also includes public areas where people can share their experiences with others who have the same concerns.
"These technologies bring caregivers who are too busy or unable to leave home many of the benefits of support groups and other service interventions, including relevant information, peer advice, and professional counsel," says Dr. Patricia Flatley Brennan of the Frances Payne Bolton School of Nursing at Case Western Reserve University. Among other things, she says, a nurse moderator helps AIDS patients take a more assertive approach to confronting physicians about the nature of their care.
What's needed
But the sudden information free-for-all has its drawbacks. "Today, anyone who has a screen and a network card can be a health information resource," notes Virginia Saha, assistant director of the Cleveland Health Sciences Library at Case Western Reserve University. "We need a way to guard against the perception that 'if it's on the computer, it must be true,' and must find ways to give consumers guidance about information's reliability and accuracy."
That assumes, of course, that the exciting new technologies become widely available. For all the potential of new information technologies, their potential impact on the quality of health care remains limited because many people still do not have access to them. Dr. Tom Sinks, associate director for science at the Centers for Disease Control, notes that "the Internet is already, and will continue to become, a real method of communicating with the public. But much of the public that CDC must reach is not the empowered public."
In seeking to increase access to technology, we must be careful to keep the end users in mind. "If we just set out to design computer systems or create an interesting interface and don't look at the consumer's needs, what we've designed is a toy," argues Dr. David Gustafson, principal investigator for the Comprehensive Health Enhancement Support System, a computer-based health project in Wisconsin. "We don't need toys. We need to take the potent value of computers and use them to the fullest, which a clear understanding of consumer needs makes possible."
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| Online health services. . . |
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| . . .bring patients out of isolation . . . |
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| . . .and give them the comfort of daily contact. |
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