September 1, 2001
WIRED MAGAZINE
The Citizen Scientists (continued)
It has been a long day. In the morning, a neuropsychologist confirmed what Robert Griffice and Sylvia Odem already feared: Riley has significant language delays made worse by chronic ear infections. Sylvia, a slender woman with strawberry-blond hair and dark, stylish glasses, looks exhausted.
Their lives have changed dramatically since their own D day, when Sylvia, still on the delivery table, tried to focus as the doctor mentioned that there were “a few things going on”—cleft palate, herniated umbilical cord, clubfeet. A couple of hours later, after the medical team had whisked Riley away for tests, they learned that a heart murmur had been added to the list.
Almost immediately, several extended family members went online, discovered Cody’s Chromosome 18 site, and told Robert and Sylvia about it. After their initial shock, the couple logged on—in violation of their pediatrician’s express admonition—and downloaded hundreds of pages on genetic disorders, feeding problems, and language delays. When it came time to decide whether their baby should have a complicated operation, they peppered the surgeon with so many well-researched questions that, says Riley’s father, smiling grimly, “the doctor told us he felt like he’d just taken his boards again.”
After much agonizing, they opted for the surgery. Then they fired the pediatrician.
“Now parents often know more about diseases than health care providers. They want to be partners.”
Cyberspace has spawned a powerful breed of parent advocates, people like the Odem-Griffices who make it their business to gather information, weigh alternatives, and make the kind of life-and-death decisions that were once the prerogative of doctors. Some health advocates call it one of the more remarkable, and least noticed, phenomena of the network age.
Unnoticed, perhaps, because so much of it happens behind closed doors. According to Donald A. B. Lindberg, director of the National Library of Medicine, an “unforeseen outcome” of making Medline—an online government database of 11 million biomedical abstracts—free was that it was discovered by the public. Five years ago, the NLM counted 7 million searches a year. Today, that figure has risen to 360 million, and the library estimates that one-third are done by consumers. This trend convinced the NLM to expand its original mission of providing library services to health professionals; two years ago, the organization introduced Medlineplus and ClinicalTrials.gov—huge databases aimed at laypeople but, it turns out, also used by doctors.
Although medical professionals and public health advocates have been pressing for hard numbers to quantify the sea change in demand, there is little data available, and what there is is largely anecdotal. Consider the case of Gleevec.
The experimental drug was fast-tracked through the FDA after clinical trials showed it had a remarkable ability to shrink tumors in patients with chronic myelogenous leukemia, a rare and deadly form of the disease. Members of a listserv, under the aegis of the Association of Cancer Online Resources, spread the word about Gleevec, bringing scores of patients into new clinical trials for other cancers. Then they went one step further, creating a new listserv, called Life Raft, where participants in one trial could share information about the drug’s efficacy, its side effects, and their interactions with doctors.
Conservative clinical oncologists cringed. Life Raft represented a major break with medical precedence: The identity of participants in clinical trials always had been confidential, the logic being that the human response would pollute the integrity of the data. But the listserv did offer some advantages—the biggest one being that patients are clamoring to join clinical trials.
“Better-informed people are more willing to participate in the advancement of science,” says Gilles Frydman, founder of the Association of Cancer Online Resources. “Those patients taking Gleevec do not consider themselves guinea pigs. They are recipients of experimental medicine.”
The pharmaceutical industry is betting heavily on this trend: Merck, Eli Lilly, GlaxoSmithKline, and Johnson & Johnson have all invested millions in Web-based startups that recruit and enroll patients in clinical trials and that boost sales through direct marketing.
For many doctors, however, the Net remains a minor annoyance at best, a snake oil salesman at worst. But what’s certain is that by altering the encounter between physician and patient, the Internet has fundamentally changed the practice of medicine.
“The traditional mantle of authority has been shaken,” says Tom Ferguson, a medical doctor and the author of 11 self-help books, including Health Online. “I feel sorry for my colleagues who feel that the rug is being pulled out from under them. Because, to a large extent, it is.”
Many doctors tell stories about patients clutching computer printouts—“coming in with real garbage,” as Ferguson says. “But sometimes—and this is what’s most problematic for doctors to deal with—their patients come in with good, reliable stuff that the doctors don’t know about.”
Understandably so, since there’s no way any physician could keep abreast of the 17,000 general health-related Web sites. An estimated 60 million American adults go online to get health information, according to research done in February by the Pew Internet and American Life Project. More people go online to seek medical information than to shop, look up stock quotes, or check sports scores. And of those, about 41 percent say they use the information to make important health decisions.
I ask Jannine Cody about this over dinner at a Mexican restaurant on San Antonio’s picturesque river walk. She agrees that the Net has revolutionized the parent support group movement. “It’s allowed families to connect with each other and get the most up-to-date information, as opposed to what’s in some 30-year-old textbook on your doctor’s shelf. When my daughter was born 16 years ago there was no place to go.”
We order chicken quesadillas and beef fajitas, and dig in under the glow of the heat lamps. Liz, Cody’s daughter, sits quietly beside me. She is 16 but seems younger. When she talks, I have to listen closely: Her speech is hesitant and she tends to drop words, problems that Cody says are aggravated by the same chronic ear and sinus infections that currently trouble Riley Odem-Griffice. Liz has had 18 surgeries to correct her cleft palate as well as sinus and ear problems.
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