On a typical day, 8 million adults in the United States roam the Internet for medical information. And that’s just a fraction of the nation’s total of 113 million “health seekers,” the name given by Pew Internet & American Life Project to people who search online for answers to questions about what ails them. This project (see www.pewinternet.org) reports on the myriad ways the Internet is changing American life and has found that government agencies, doctors, health care organizations and even other patients with experience in a disease are providing those answers, as are plain, old-fashioned purveyors of snake oil.
Online Research Pros and Cons
Some benefits of all this cyber activity are obvious, said Michael F. Chiang, MD, who is an assistant professor of ophthalmology and biomedical informatics at Columbia University and serves on the Academy’s Committee on Medical Information Technology.
For starters, he said, informed patients are more likely to be compliant, as well as actively engaged in their own care. Health on the Net Foundation (HON), a group that promotes a code of conduct for health care sites, agrees. The Internet “can make for more knowledgeable patients, physicians, nurses and other medical care providers,” reads a posting on its Web site (www.hon.ch).
The wild, wild Web? “Philosophically, more information should be better,” said Dr. Chiang, but he is concerned about the unregulated flow of information on the Internet: Who’s posting it? Do they have the authority to promote medical information? Do they have a conflict of interest? Are there unacknowledged differing opinions about the subject?
“Right now, because anybody can publish things, there’s no overall policing for the Internet,” Dr. Chiang noted. Even a group like HON, which is dedicated to improving the quality of medical information on the Internet, has little power.
“HON doesn’t say, ‘You’re HON certified.’ You just read the criteria and say you’re certified. Anyone can post things.” Furthermore, Dr. Chiang said, “Everybody’s got a different level of literacy, education and needs.”
Consumer beware. So how do health seekers, sometimes called “cyberchondriacs,” make sense of what’s out there? Not very well, according to Pew, which reported that consumers check food labels more carefully than they check their online health information. Most health seekers, about 85 million, gather advice online without examining quality indicators, such as the date and source of the information.
Who’s the Doctor Here?
Another concern of the medical community is whether online health seekers are self-diagnosing and self-medicating, without consulting a physician. Though Pew found that a third of health seekers later talked with a doctor or other health professional about online information, two-thirds did not. In either case, health care decisions can be dangerously impaired by misinformation:
- “What concerns me are the families of patients,” said Sherwin J. Isenberg, MD. “They’re going online and they’re getting information that is often erroneous.” Dr. Isenberg is professor and vice chairman of ophthalmology at the University of California, Los Angeles. Some of his patients have visited Web sites that warn them against eye muscle surgery, saying it is potentially blinding or will lead to permanent double vision. “These patients are then often afraid to have eye muscle surgery performed,” said Dr. Isenberg.
- Dr. Chiang’s patients have asked him about the “See Clearly Method,” an eye exercise program marketed as an alternative to corrective lenses and refractive surgery. Last year, the Iowa Attorney General’s office halted sales of “See Clearly” kits, which had already been sold to tens of thousands of people over the Internet for $350.
- Recently a patient with a congenital eye movement abnormality syndrome told Dr. Chiang that he needed an MRI. The reason? A member of an online support group said that it was necessary. It’s easy enough to deal with these sorts of requests, Dr. Chiang said. “As physicians, our jobs are not only to provide diagnoses and treatments but also to explain them to patients.” In fact, he did talk the patient out of the MRI.
But such encounters eat up valuable time, and they can undermine care, say, if a disgruntled patient doesn’t return. Pew, in fact, found that some patients whose doctors reject their online research do leave that doctor’s practice, if they can.
Open ears for Eye M.D.s. In a commentary last year in the Washington Post (July 11, 2006), Marc Siegel, MD, an internist and associate professor of medicine at New York University, suggested ways to work with Web-savvy patients. “Whatever the source of a patient’s information, a physician is most effective when he or she isn’t defensive, but acts as an interpreter of information and guide of treatment, leaving the ultimate control to the patient.”
On balance, it appears doctors accept patient input. Erika Fishman, senior health analyst with Manhattan Research, a health care market research firm in New York, said that about 80 percent of physicians whose patients have brought in information say the information had an impact on treatment decisions.
An evolving relationship. The Internet may also be having an impact on the doctor-patient dynamic. “The nature of the clinician-patient relationship may be slowly changing because of things like the Internet and growing accessibility of information,” Dr. Chiang said. “The question is: Are clinicians very gradually shifting away from being primary sources of information to being more like brokers of information where people come in with bits and pieces they’ve learned from other people or other physicians? Is it going to be up to the physician to help guide the patient through the process, instead of being the sole source?”
As HON noted, “Medicine’s move into the Web is unstoppable.” Good as that might be, “online information cannot replace the vital personal relationship between patients and their doctors.”
Search and Chat: Eye M.D.s on the Web
Doctors are using the Internet, too, as both a medical library and a way of consulting with colleagues. In fact, more than three-fourths of physicians say the Internet is essential to professional practice, according to Manhattan Research. Fully 96 percent of ophthalmologists have Internet access in the office, while nearly one-fifth use it daily for tasks such as searching literature databases, or looking for prescription drug information and patient education materials. Ms. Fishman said the Internet has become a “decision support tool.”
Where to start the search. Doctors, not surprisingly, are more sophisticated consumers of health information than health consumers. While consumers typically first go to a search engine, such as Google or Yahoo, physicians tend to go to sources they know, such as society or journal sites, said Ms. Fishman.
Dr. Isenberg noted that many journals are publishing papers online before they appear in print. “It’s speeding up the delivery of material.” Dr. Isenberg is a former editor of the Journal of AAPOS. Some journals, in fact, are now only available online, though there is no evidence that the print journals are disappearing, said Ms. Fishman, who noted that physicians are twice as likely to read hard-copy journals.
For a patient consult, check your e-mail. Many physicians spend time online talking directly to other physicians, in discussion groups dedicated to specific topics in ophthalmology. These forums, often set up as listservs, provide a vehicle for a doctor to present, by e-mail, a challenging case that will be sent to every doctor registered with the group. Anyone may reply, and sometimes the questions generate multiple replies. The forums provide “great pearls, great discussions,” according to William B. Trattler MD, volunteer assistant professor of ophthalmology at the University of Miami. “They add to our knowledge of how to treat patients.”
A recent exchange on the ISRS/AAO (International Society for Refractive Surgery of the American Academy of Ophthalmology) listserv was prompted by a question about the proper use of mitomycin-C for PRK re-treatment. Another exchange concerned post-LASIK ectasia. “Once you start participating, you realize it’s as good as any conference you can go to, or reading a journal every month,” Dr. Trattler said.
Not peer-reviewed, perhaps, but certainly peer-friendly. However, online discussions are not meant to replace journal articles, he added, explaining that scholarly articles impart information from which a doctor may extrapolate to treatment.
On the other hand, online discussions tend to focus on the particularities of individual cases. They’re not peer-reviewed like journal articles, but, Dr. Trattler said, “You get a good sense of the doctors you really trust.” He urges colleagues to try an online discussion group, where they will be privy to “the collective minds of thousands of doctors.”