|The world as a global village is not just a simile. A vacation or business trip could mean importing an infectious disease like viral meningitis or contracting a bacterial infection, like the strain of E. coli that was rampant in Japan recently. Physicians need to be able to get the latest information on such outbreaks, and the quickest means is clearly the Internet.|
by Margaret Keenan
illustrations by Joel Nakamura
In April 1995, a 21-year-old university student lay unconscious in a hospital in Beijing. Her symptoms of abdominal pain and hair loss had begun about four months earlier, but she seemed to recover. Then in March she began to have pain in her legs, dizziness and blurred vision. Her condition worsened and she lapsed into a coma. Her physicians continued to run tests but were unable to come up with a diagnosis. On April 10 a fellow student posted an SOS on the Internet that included a description of her case and this plea: "If anyone has heard of patients with similar symptoms or has any ideas as to what this illness could be, please contact us... we are desperate to help her."
"The Internet frees students" Dr. Nowakowski observes, "because they can log on at any hour of the day or night, and they can work from home."
By the 24th there had been 600 replies from 400 e-mail accounts around the world. Among them were messages from neurologists in Sweden and neurosurgeons at UCLA who were instrumental in diagnosing her illness - poisoning with thallium salts. There was further international cooperation and crucial advice from toxicologists in prescribing and managing her therapy.
The case is a stunning example of what's best about the Internet - the rapid, global exchange of vital information, not to mention no consultation fees. A one-year update was posted in May, outlining the young woman's progress and thanking those who had helped to save her life.
Not all doctors are so wired. The May 1 issue of the Journal of the American Medical Association bemoaned the fact that except for office scheduling and billing, "personal direct computer use for medical purposes by hundreds of thousands of U.S. physicians has lagged badly behind the capability of the systems and technology." The AMA should know. The online service it launched in 1982 folded seven years later after millions of dollars of losses, according to Robert Musacchio, vice president for information resources and chief information officer. He says more than 30,000 physicians signed up, but only about 10 percent actually used it.
Since then, the article continues, more than 200,000 new physicians have graduated in the U.S. and most are computer literate. So the AMA is trying again, this time in conjunction with Loma Linda University School of Medicine. Their project, called Physicians Accessing the Internet, aims to teach doctors how to use it. But it won't be an online course. The AMA has learned that many physicians have to be taught to use computers first, Musacchio says. The project will consist of continuing medical education courses, and the plan is to have four regional sites to provide hands-on training.
Faculty and staff at UMDNJ have had access to the MEDline databases at the University's libraries for 20 years and for the past 10 have been able to log on remotely. According to staff at the Smith Library, in any 24-hour-period in 1995 an average of 1.5 users logged on each minute of the day, spending about 10 minutes each time accessing the library's online catalog or other database services.
As far as Robert L. Trelstad, MD, is concerned: "If you aren't browsing the Web, you are missing out on a social, economic, cultural and fiscal phenomenon." A physician today who doesn't use this technology, he adds, is akin to one not using a telephone: "He might be brilliant or dumb, but he will be isolated."
A professor and chairman of pathology at UMDNJ-Robert Wood Johnson Medical School, Trelstad began teaching with computers in 1981. "It was relevant then to ask students if they knew how to turn them on," he says. "Today, only non-believers aren't using computers." And he has little patience with them.
By 1986 he had developed a computer-based pathology course, the first product sold by Keyboard Publishing, a company he helped launch. Instead of attending lectures, students prepare for weekly small group sessions at the computer, where they can access eight texts, including "Robbins Pathology" and "The Merck Manual," 50,000 images and many quizzes for self-testing.
Sometimes they take slight detours. On a visit to the computer lab in the fall of 1995, one student had gathered a crowd. He was looking at just-published, grainy photos of the body of Nicole Brown Simpson - a reasonable diversion for a pathology student.
"The power of the computer as teacher is just beginning to emerge," Trelstad states, "and it will have an immense impact on continuing education for a range of health care providers, including physician specialists and nurse practitioners." As far as the medical publishing world is concerned, he adds: "Gone is the idea that the physician is the source for information. The Web puts you in a whole new world, where some information is provided by medical experts and some by patients.
"Picture this. You've just been told you have prostate cancer. The doctor continues to talk, but you aren't taking it in. Three days later, when the shock has worn off, you call and ask him to explain it again."
How much better it would be, he points out, if the patient left with a printout of the treatment options and the doctor's recommendation. And that is beginning to happen. Trelstad cites the announcement in June that Xerox and a California HMO would team up to give patients printouts as they leave the office. They would include generic information on the illness, but be tailored to meet the individual's needs in terms of specific medication, dosage, etc. Not only would it be easier for patients, but it is expected to boost their compliance.
"With a diagnosis of prostate cancer," he continues, "although a surgeon tells you what to expect as far as incontinence and impotence are concerned, you would want to ask other patients what their experiences have been, and the Web is an easy way to do it."
"Gone is the idea that the physician is the source for information. The Web puts you in a whole new world, where some information is provided by medical experts and some by patients.
People are already flocking to the Internet for such advice. An article in The New York Times (June 24, 1996) on the abundance of online health information reported: "194 sites devoted to alternative medicine, 125 on dentistry, 983 on diseases and conditions, 1,633 on medicine, 346 on mental health, 389 on pharmacology, and much, much more," on just one website service source, Yahoo.
Trelstad demonstrates the Internet's scope to students. In conjunction with a course in environmental and community medicine, his assignment was for them to find out if elderly square dancers break their hips. The question was meant to stimulate discussion of agility as a learned behavior and the benefits of exercise and activity to prevent osteoporosis, the major cause of such fractures.
"We could have consulted HealthNet, MEDLINE or anecdotal literature," he observes, "and I did have to give the students a steer. I had called up dance groups on the Web and e-mailed them for information on elderly dancers falling."
One respondent contacted his insurance coordinator, who handles a blanket policy for Texas Square Dancers, and reported these statistics: "Fifteen callers with an average of 15 years experience, calling an average one dance a week. That's 15 x 15 x 52 (weeks) = 11,700 total dances (doesn't include lessons). Average attendance: 10 squares, 10 x 8 = 80; 80 x 11,700 = 936,000 dancers; 10 percent are over age 65. Summary of injuries to 93,600 dancers in this category: one broken wrist and two sprained ankles."
Richard Nowakowski, PhD, associate professor of neuroscience and cell biology at the school, has one of his courses on the Web. Call up UMDNJ, choose schools, Robert Wood Johnson, courses of study, neuroscience. Among the selections you can view are: handouts and slides for lectures; the previous year's final exam and - as a result of impassioned student pleas - the answers; teaching faculty and their e-mail addresses; a breakdown of how final grades are determined; and pertinent data banks at other institutions. A student added a song from the TV show "Pinky and the Brain," which Nowakowski says has a cult following. He watches it faithfully.
"The Internet frees students," he observes, "because they can log on at any hour of the day or night, and they can work from home." He recalls that e-mail was a boon during last winter's snowstorms, enabling him to get messages to nearly everyone about canceled classes and rescheduled lectures.
"Every year the students get better as far as computing skills go," he says, "but, not all of them are up to speed." His course has been online since 1992. "The first year I was overambitious," he reflects. "Some didn't know how to use e-mail or browse the Web, so I backed off a little."
But he keeps pushing. The only mailboxes they'll find stuffed with messages from him are online, and he wants them to take the initiative to increase their computing skills. "Just as I don't teach them to drive a car so they can get to school, I shouldn't have to teach them to use a computer," he observes.
Students will clearly learn on their own. But what about all those doctors who graduated before computers were ubiquitous? How can they be hooked?
The American Medical Association's new online service should help, and at UMDNJ there are a number of ways physicians are being lured to the Net. William Spence, MLS, at the UMDNJ-Health Sciences Library in Stratford, teaches a class on the use of the Internet for health care professionals. He developed a web site featuring "a representative collection of links to Internet health science resources of all types" for teaching purposes. The address is: http://www3.umdnj.edu/~libcwis/med-int.html.
Included in the site is a section on consumer- and patient-oriented support groups. Two examples are: MedHelp International, a comprehensive service staffed by volunteer physicians and health care professionals who present information in lay terms; and NIAID (National Institute of Allergy and Infectious Diseases), which covers research on AIDS, tuberculosis, asthma, etc. (See Selections.)
There are also courses offered for faculty, staff and students on all campuses by UMDNJ's Information Services Technologies group and by the University's libraries. Classes range from learning how to access online catalogs and commercial bibliographic databases like MEDLINE, Health, and PsycINFO to sending e-mail and using programs for molecular modeling and genetic engineering.
Basic scientists were quick to embrace computer technology. Bruce Byrne, PhD, an adjunct professor of medicine at Robert Wood Johnson Medical School in Camden, spearheaded a project that involved state-of-the-art sequence analysis software which molecular biologists use to store, manipulate and compare DNA and RNA samples.
"The University's Academic Information and Technology Advisory Committee arranged for purchase of it," he explains, "and we got the word out through e-mail, set up a home page describing the software and how to use it and registered about 100 people for a class -- online, of course."
A three-day video conference was organized, and scientists on four different campuses participated. There were morning lectures and demonstrations and then supervised hands-on training sessions on each campus.
Another computer maven is Frank Sonnenberg, MD, associate professor of medicine at Robert Wood Johnson Medical School. Following his residency, he did a fellowship at the New England Medical Center, where he studied the medical applications of computers and decision analysis, which is still a major focus of his research.
Sonnenberg explains decision analysis as a formal process based on logic that determines what clinical options give the best outcome, including a quality of life assessment that takes into account probable side effects. "It involves determining what the options are, gathering data on likely outcomes and building computer-based models to calculate the expected outcomes."
Dr. Sonnenberg has been instrumental in getting the Division of General Internal Medicine to computerize its patient records. "It allows anyone on call to see all the medications a patient is on and the notes written at the last patient visit. It's very valuable when a patient is ill and can't communicate or remember."
During his fellowship he helped develop a program called Decision Maker that is now widely used. He cites two influential studies published in the Journal of the American Medical Association that used it - one analyzed whether PSA screening tests should be run routinely and the other evaluated the best treatment options for localized prostate cancer.
"The main reason why these programs are valuable," he points out, "is that in many diseases like prostate cancer, there is no clinical trial data to tell you the best treatment option - you have to infer from what little data is available."
In his own research, Sonnenberg is using Decision Maker to compare the outcomes and the cost of surgical patients getting their own blood as opposed to being transfused with donations from blood banks. He notes that today "cost-effectiveness has become a major part of decision analysis."
Sonnenberg has been instrumental in getting the division of general internal medicine at the school to computerize its patient records. It allows anyone on call to see all the medications a patient is on and the notes written at the last patient visit. "It's very valuable when a patient is ill and can't communicate or remember," he says. "It's also helpful in extracting data, like how many patients over 65 have not yet gotten flu shots." When links to the emergency room are upgraded, patient charts can be sent by modem from the physician's terminal. In the meantime they can be printed and faxed. To protect patient confidentiality, the files are password protected.
Computer enthusiast that he is, Sonnenberg has mixed views about the health information on the Web:
"I'm glad that patients want to educate themselves about their illnesses, but my biggest concern is the lack of editorial control and how patients evaluate the quality of the information. Anybody can put anything on a web site, can claim to be a doctor or assume a professional identity that sounds impressive. Patients still need to rely on their own physicians to interpret the information they get."
Nevertheless, more and more patients are accessing the Web, and they may become a powerful force in pushing clinicians. In Princeton late in May, about 115 people attended a dinner party. Days later, severe diarrhea, cramps and fever caused many to consult their doctors. When The New York Times began reporting an outbreak of cyclospora in June, some of them began calling their physicians, asking if they had been tested for the parasite and suggesting that they should be. At least one person got on the Internet to view the Centers for Disease Control and Prevention's home page and found information on cyclospora there. Eventually 41 were found to have contracted it, according to the state department of health.
Cyclospora is not common and was not on the standard list of pathogens to screen for in people with such symptoms. Still, a number of patients seemed to know as soon as or before their physicians that it was a probable cause of their illness. It's not likely that doctors will want to find themselves in that position too often, and that may motivate them to get wired.