E-valuation
Nurses help patients sift through and assess online health sources to find reliable and accurate information about medical conditions

By Phil Barber
July 9, 2003

'Ephedra can be used to effectively treat asthma, hay fever and nasal or chest congestion."

"If you have hypertensive epistaxis, you can consume as much salt as you want, as long as you drink enough vinegar to 'cancel it out.' "

"It's all right to take in great quantities of pork fat, even if you've just had your second heart attack-assuming you balance it with cholesterol-cutting cabbage."

An experienced nurse would find these statements ludicrous, but patients have uttered them all in the Internet Age.

Computer programmers didn't invent bad advice, of course. Overbearing dads and next-door neighbors have dispensed their own versions for centuries. But rumors and misinformation have taken a quantum leap in recent years. Practically everyone in America has access to a computer terminal and a modem. And seeing something in print-even if that print is on an electronic screen-tends to legitimize the information.

"A female patient came in. She was having stomach pains," recalled Penelope Vickers, RN, who works in outpatient surgery and endoscopy for Battle Creek Health System in Michigan. "She had done some reading, and was under the impression that stomach pains most often led to stomach cancer. I had to sort through that, to let her know it was a good thing she did all that reading, but it didn't necessarily mean she had stomach cancer."

Unfortunately, the response can't always be so cut-and-dried. Sometimes, a patient's research produces a mix of accepted and questionable information. Or a proposed alternative can reside in a gray area.

"One patient hoped she would regain control of her bladder function if she had the acupuncture treatment she read about on the Internet," said Sandi Disher, RN, who works at a urology clinic in Ontario, Canada. "We told her that we do not see sufficient research to support this treatment, and we do not offer it in our clinic. However, since the treatment was offered by a qualified professional, we did not see any harm in her trying it.

"She did a course of acupuncture, but unfortunately did not achieve bladder recovery."

Rosanne Gephart, MSN, RN, CNM, a nurse practitioner who runs the Women's Health & Birth Center in Santa Rosa, Calif., gets plenty of expectant mothers armed with well-intentioned literature. The most common issues they raise are immunizations and vitamin K supplements, which either can be injected, as in all U.S. hospitals, or given orally, as in Canada and England. Gephart is open to some alternative procedures; however, that doesn't reduce the need to evaluate information and tailor suggestions to each patient.

Gephart recalls one client who was tested as Rh negative and therefore scheduled for a dose of RhoGAM. However, the woman had researched the subject thoroughly and was worried about a preservative often used in the globulin. "She wanted to know what dye lots we had," Gephart said. "I thought, 'Oh my gosh, I'm overwhelmed.' It probably took me two hours to find the company, talk to the right person and find out which batch of RhoGAM we had. But it's a legitimate concern."

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