BECAUSE OF AN EDITING ERROR, A STORY IN LAST WEEK'S HEALTH SECTION ON GETTING MEDICAL INFORMATION OVER THE INTERNET GAVE THE WRONG SOURCE FOR A STUDY SHOWING THAT MANY WEB SITES CONTAIN DATA THAT IS WRONG OR HASN'T NOT BEEN REVIEWED BY SCIENTISTS FOR ACCURACY. THAT STUDY WAS PUBLISHED IN THE AUG. 1 ISSUE OF CANCER. (PUBLISHED 09/07/99)
Susan Zachary was a 39-year-old homemaker in Gainesville, Tex., when she learned multiple sclerosis was slowly crippling her.
Zachary knew nothing about the disease. Her local library carried just two books on MS. It was 1987 and Gainesville, a town of 14,000 north of Dallas, had no support groups.
Feeling alone and isolated, Zachary grew embarrassed to walk in public. She spent most of her time at home.
Nine years passed before she found the Internet and typed her first search term: multiple sclerosis. Links poured back.
Within two months, Zachary and five other women who met online launched MSWorld, a support group for people with multiple sclerosis.
The nonprofit group now counts more than 1,000 members worldwide. Its site on the World Wide Web -- msworld.org -- offers a library of medical information, support chats at most hours of the day and an online magazine where members post poetry, art and other contributions. Doctors routinely direct patients to MSWorld, its operators say.
Zachary serves as its vice president, a role she calls the most rewarding passion she's found short of motherhood.
"I've been to hell and back with this disease," she said. "And I thought I was the only one. I've found out there are thousands of us out there."
Each day, the online audience for medical information grows. A Harris poll released this month said as many as 70 million U.S. adults have searched the Web for health information in the past 12 months.
Online visitors find consolations and consultations. They want diet advice, fitness tips, miracle treatments, drug data and doctor directories. It's all there, usually free, unfiltered and immediately accessible.
Some health care experts envision a future where doctors routinely add an Internet component to their prescription for treatment.
Other medical professionals are slow to embrace such a future, but acknowledge they might not have a choice. Increasingly, patients arrive armed with computer printouts, want to communicate through electronic mail, and use the Web to research the physician and treatment.
Yet there is scant evidence that this new empowerment for patients is leading to better care, especially since so much of the information available online is not vetted by experts.
Still, for those seeking information about disease, there is an added bonus to the Internet: patient relationships that allow connections with others who share the same concerns.
Zachary's site represents this subset of the Internet society: health sites developed by people whose interest is purely personal. They suffer or know someone who does. Confounded by the Web's disorganization, they form communities where unseen strangers lean on each other for information and support.
"It's a resource for health care that's not like anything we've had before," said Tom Ferguson, an Austin, Tex., physician who has written about the Internet's impact on health care.
Robert Levitan, president of BetterHealth.com, remembers that such groups weren't around when his mother contracted lung cancer 15 years ago. She was confused and scared, but the doctors told her little about her condition or were more likely to talk just to her husband, Levitan said. She died in 1984.
When Levitan heard last year that a friend's wife had contracted ovarian cancer, he sought to help the family by turning to the Web and posting a request for information.
Within minutes, he received the e-mail address of an ovarian cancer patient described as a valuable contact, he said. Then came a second message offering a list of relevant Web sites and a promise for prayers. A third woman passed along her phone number. She didn't have cancer, but was willing to lend a supportive ear.
"There's nothing virtual about that," Levitan said.
Estimates for the number of health-related Web sites top 15,000 and are rising. Type "new cancer therapies" into a newsgroup search engine and you'll find 49,000 postings, starting with one that boasts of a Chinese herbal tea to heal all tumors for $60 a bottle.
Many sites are targeting an audience searching for hope. CyberDialogue, an Internet research firm, estimates that more than half the adults scanning online health information are looking for disease-related content, most often about cancer.
But a significant number of sites provide bogus information.
Last fall, FTC officials joined counterparts from two dozen countries to identify 1,200 sites and newsgroups promoting dubious cures, treatments or preventive measures for AIDS, cancer, heart disease, arthritis, diabetes and multiple sclerosis. The commission later announced settlements with four companies it said had made unsubstantiated promises to consumers.
A study published this month in the Journal of the American Medical Association found that many medical Web sites contain data that is wrong or hasn't been reviewed by scientists for accuracy.
Even the Securities and Exchange Commission has begun to crack down on hucksters on the Web who promote outrageous cures to improve their stock prices. One of the most recent actions, detailed last week by the New York Times, was against a small automobile dealer, Uniprime Capital Acceptance Inc., that advertised on the Internet that it had found a cure for AIDS. But reports of research on the medication were not well founded, according to the SEC complaint.
Meanwhile, experts urge consumers to scan sites carefully.
Roger Spott, an oral surgeon from Silver Spring who teaches other medical professionals how to use the Internet, tells his students to weigh a site's credibility and currency and its author's credentials. The Web, he warns them, "is like the Wild West."
Online watchdogs have also emerged. One, www.quackwatch.com, lists what it calls questionable products and advertisements and offers tip sheets such as "Fifteen Ways to Spot an Internet Bandit."
The highly publicized Drkoop.com Web site bills itself as "Your Trusted Health Network" and includes a section where it rates other health sites with one to five stars. But even its namesake, former U.S. surgeon general C. Everett Koop, said he expects the "fly-by-night" operators won't last long on the Web.
"There's always a downside to every new thing in medicine," Koop said earlier this year, "but it shakes out pretty quickly."
The Internet is a medium where everything happens quickly. When the federally funded Science Panel on Interactive Communication and Health first convened in late 1996, its members expected to study the impact of health-related CD-ROMs and other technology. Then the Web exploded as a vehicle for health information, and the panel changed its focus.
Some in the group were alarmed to discover Web site operators using sophisticated technology to identify users and gather personal health information they can sell or tailor for their own marketing.
"The more we looked at, the more we realized how dangerous some of these sites can be," said David Gustafson, a University of Wisconsin professor of industrial engineering and preventive medicine who chaired the panel.
In its report last spring, the group proposed that health Web sites voluntarily adopt labels that disclose standard information and the identity of their operators and sources for the information posted.
Still evolving are ethical and legal questions over the electronic sale and distribution of medicine and advice. Currently a doctor in one state can prescribe treatment for a patient in another, without ever seeing the patient. But some health experts question whether that procedure should be allowed and some states are trying to stop the practice. Other experts have questioned whether e-mails constitute professional advice.
Gustafson pioneered studies on a much deeper, but unresolved, question: How can using the Internet affect a patient's health?
When his wife was diagnosed with breast cancer a decade ago, he devised a computer program to help her learn about her condition, communicate with other patients and read articles about other women's battles with the disease--activities now common through the Internet.
Studies later showed that patients who used his Comprehensive Health Enhancement Support System--or CHESS--had better relationships with their doctors, lower health care costs and a higher sense of social and emotional well-being than those patients who didn't use the program, Gustafson said.
But there's no evidence that CHESS had any effect on their cancer.
Changed Medical Practice
Beyond serving as an extended library and an e-mail support group, the Internet is also changing the delivery, speed and business of health care. Doctors can now view X-rays or lab tests from home, consult with colleagues around the world in seconds or retrieve patient records at any time.
The nation's largest HMO, Kaiser-Permanente, lets members in the mid-Atlantic and two other regions schedule appointments, research medications, join discussions or ask questions of an online pharmacist or nurse. About 40,000 members have registered for these services, and Kaiser officials predict the number will grow to 100,000.
Also under consideration is an interactive questionnaire that would enable the HMO to pair patients with physicians who share similar philosophies about treatment and other medical issues.
In the Washington Hospital Center emergency room, doctors who might once have waited hours or days for a medical record or lab test are now just a few clicks away. Two Internet terminals are perched in the middle of the room and doctors use a portable "clipboard computer" that lets them log in from a patient's bedside.
"We who use the Internet all the time know it's very pragmatic," said Craig Feied, a physician and the informatics director for the emergency room. "It's good for doctors, it's good for patients, it saves lives."
A former computer programmer, he has been preaching the potential of the technology for more than a decade, largely to deaf ears. "Doctors are holding back for a very simple reason," Feied believes. "They're just swamped."
Take Carl Crimm, a family practitioner in Annandale. He's skeptical about the credibility of online information and worried about the legal issues. He believes that face-to-face care is crucial to his job.
"What I need now is time," Crimm said. "I don't need more information and anything that takes away my time, I will fight to the end."
Economics may also play a role. Doctors who are paid a flat fee or a fee based on patient enrollment in the health plan may find e-mailing a patient cost-effective. But doctors such as Crimm, who are paid based on the number of patients they see, may not.
Still, Crimm recognizes he can't avoid accepting the Internet. "I think I'll have to do it, yes, because the consumer will want it," he said.
Susan Zachary hears from more of those consumers every day. Some send e-mails to MSWorld the same day they are diagnosed with multiple sclerosis. They are shocked, scared and desperate for answers.
Zachary remembers the feeling. It lingered for nearly nine years. "I had to go through everything alone," Zachary said.
One of her closest friends now is a woman with MS who lives just 60 miles away. They see each other only a few times a year, but chat most nights over the Internet.
"That's a big thing," Zachary said. "To know you're not alone."
John P. Martin is a staff writer for washingtonpost.com.