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Devoting that much time to a single patient can be annoyingly counterproductive. However, Gephart wouldn't trade self-educated patients for passive or clueless ones. "I think it's wonderful," she said. "It creates a hassle, but it also creates an aware consumer."

That's clearly the consensus opinion among nurses interviewed for this story. "Patients have begun to consult the Internet and other sources a lot more," said Carol Bickford, Ph.D., RN, a senior policy fellow in the American Nurses Association's Department of Nursing Practice and Policy. "And practitioners haven't responded. Until we see the patient as a partner, we're not going to win-meaning positive health outcomes."

Get smart

The goal, most nurses agree, is not to smother a patient's desire to gather information, but to direct him or her to reliable resources. A Google search for "lupus," for example, turns up nearly 1 million results. The first 10 listings are primarily government or academic sites; however, there is one commercial site for a private doctor. More of a concern are the links down the right side of the page. There was a time when Google accepted no advertising; those days are gone, and the right margin comprises links" to peddlers of drugs and natural remedies.

"If I were a nurse practitioner, I would have access to a computer right there in my clinic," Bickford said. "I could go to a site, look at their privacy statement, who they are and make the patient understand that it might not be the best source."

Bickford mentions PubMed.com-which accesses the National Library of Medicine-and the recently revamped site of the U.S. Department of Health & Human Services as two solid fonts of health information. "There are also some excellent resources established by support groups, by people who have had the opportunity to do extensive literature research," she said. "They're run by parents, siblings, children of Alzheimer's [patients], etc."

It's important to remember that the greatest strength of the Internet is the ability of Web managers to update content continuously. If they aren't taking advantage of this adaptability, they are probably not good choices for patient research. "You can't assume these sites will stay healthy," Bickford said. "You have to monitor them."

Disher has her pet Web pages, most relating to spinal-cord impairment, her clinic's specialty. In assessing sites, she relies on the Information Quality (IQ) Tool produced by the Health Summit Working Group and Mitretek Systems. The tool helps you numerically evaluate the integrity of medical sites, based upon 21 questions such as: Is the author identified in the article? Can you determine who has paid for the site? Is the information current? Is a search engine provided?

Patients can use this tool as well. As online research becomes more ingrained, more high-tech companies are taking the opportunity to create such solutions. MyDocOnline, for example, offers a direct communication channel between patients and doctors, allowing customers to schedule appointments and obtain referrals, in addition to educating themselves. Active Health Management, originally formed in 1998 as a resource for physicians, recently added a patient-messaging component that suggests certain questions that its subscribers might ask their doctors.

The possibilities for information retrieval are staggering, almost daunting. But the goal for nurses is the same as it ever was-to be able to listen to patients' opinions, offer suggestions or corrections when appropriate and defer to doctors or specialists if necessary.

"Most of the time, patients come looking for guidance or help," said Kimberly Thormann, MA, CPNP, a stem cell transplant nurse practitioner at Children's Memorial Hospital in Chicago. "They're looking for us to say, 'It's OK,' or 'This is what I'd do if it were our child.' The problem with the Internet sometimes is that there's so much information, you can't make a decision. It could be scary if we were to say, 'It's your decision.' "

On the other hand, knowing all the answers isn't as important as understanding how to find them. As Bickford said, "It's OK sometimes to say, 'I don't know.' "

Contact Phil Barber at barzell@napanet.net