Judy Feder is grateful for having what she calls a rare rapport with her oncologist: the ability to discuss material she finds on the Internet that could alter her treatment course and quality of life.
Feder, 50, a public-relations professional in White Plains, N.Y., was diagnosed with breast cancer in 2001. She began approaching her doctor with articles, studies and ideas shortly thereafter.
Recently, she found a small body of evidence saying that one of her chemotherapy drugs, Xeloda, would be as effective if used for seven days followed by seven days off, as opposed to a 14-day stretch that precedes a break. The difference would spare her some noxious side effects, she said.
Her doctor was receptive. "She was going to go that route anyway but she said 'I'm really glad you brought this in because I don't have time to read everything,'" Feder said. Though her oncologist doesn't agree with all her inquiries, Feder's input -- bolstered by online patient support groups -- helps her take charge of her own care.
"A couple of years of ago there was this default that doctors would say, 'Oh, there's so much bad information out there on the big nasty Internet.' But I think people have gotten a lot more sophisticated" about finding reliable, credible resources, she said. "I don't think doctors can use that excuse anymore, that if you got it on the Internet it's not valid."
Feder's experience underscores how the doctor-patient relationship is changing from one that pits a passive patient against a paternalistic doctor to more of an active collaboration. Some of the shift is driven by financial need. With more cost-sharing and high-deductible health plans emerging in employers' benefits mix, patients are under pressure to take more responsibility for their care and its costs.
"Consumers are forced to be more empowered, whether it's higher copays for physicians or having to make decisions about things," said Mark Bard, president of Manhattan Research, a health-care market research firm in New York. "They need access to information on the front line, and increasingly physicians are being shown that information."
Nearly two-thirds of physicians say the trend of patients coming in armed with online information is positive, up from 62% in 2004, according to a recent study from Manhattan Research. The referrals increasingly work both ways. Slightly more than half, or 52%, of 1,300 U.S. doctors said they recommend health-related Web sites to their patients.
Watching for pitfalls
Still, not all doctors welcome patients' initiative and may see it as threatening to their expertise. Specialists such as neurologists, surgeons and cardiologists tend to be less enthusiastic than primary-care doctors and oncologists, Bard said.
What's more, some doctors worry that consumers will try to self-diagnose and may be led astray by a false sense of security or unwarranted anxiety.
"There are cases where it can be detrimental and confusing to both patients and physicians," said Dr. Rick Kellerman, a family doctor in Wichita, Kan., and president of the American Academy of Family Physicians, whose members often point patients to its Web site, www.familydoctor.org.
Online research tends to benefit patients with certain conditions such as earaches, sore throats or even high blood pressure, he said. "We want patients in those situations to be well-educated."
But where the Web falls short is when a patient has a vague symptom or undifferentiated problem that could be caused by any number of ailments, Kellerman said, citing fatigue as an example. "Tiredness could be from thyroid problems, anemia, viruses like mononucleosis, diabetes. It could be a sleep disorder; it could be from depression."
Once patients jump to a conclusion, doctors can have a hard time steering the conversation back to a productive inquiry, he said. "It sometimes takes a long time to get people back on track."
While some patients will arrive with stacks of print-outs they want to discuss, most make judicious use of credible Internet material, which typically makes office visits run smoother, not longer, Bard said. "For more physicians than not, it's adding some level of efficiency to their practice and generally improving physician-patient communication."
Doctors need to help patients determine what information is relevant to their individual situation and point out material that may be tainted by conflicts of interest, said Dr. Vicki Rackner, a surgeon and president of Medical Bridges, a Seattle outfit that consults with employers on employee health-care matters.
"There's an awful lot of information that's there to sell a product and sometimes it's really hard to tell whose purposes are being served by having that information on the Internet," she said.
The first step is for patients to understand how much information they feel comfortable having and whether their style is compatible with their doctor's, Rackner said. "If they are the kind of person who feels more empowered if they've done more research and they bring in a file case and the doctor says, 'Oh, when did you go to medical school?' That's not a good match."
Where it gets less clear-cut is when patients can't find answers from the medical establishment, she said. "There are people who go round and round and round and truly elude diagnosis or come to a conclusion that some doctors don't believe in, like chronic fatigue syndrome."
Conditions that tend to strike women in particular can cause mysterious symptoms that leave patients in limbo for years before they get a solid diagnosis.
"The classic is lupus," Rackner said. "So what do you do? Do you suffer in silence, go to see another doctor? Most people go on the Internet, and the Internet is not set up as a diagnostic tool so they get frustrated. I have a lot of empathy for them, but what they need is a good doctor."
Spurring behavior change
Health information has been one of the Web's most popular attractions for some time, and the offerings keep growing. Many existing sites are enhancing their tools and forming partnerships to better serve users and fend off competition from high-profile entrants such as Steve Case's recently launched Revolution.com.
In the first three months of 2007, 55.3 million U.S. Internet users visited health-related sites, a 12% increase from the same period last year, according to comScore. WebMD Health led the category, followed by the National Institutes of Health site, NIH.gov, MSN Health and Yahoo Health.
Patients increasingly are going online not only to research information about their symptoms and conditions but to check a doctor's ratings on sites such as HealthGrades.com, Best Doctors and Checkbook.org.
Physicians are starting to take ratings more seriously to improve their own practices, said Dr. Atul Gawande, a Harvard cancer surgeon and author of "Better: A Surgeon's Notes on Performance."
"If we're more transparent about our results, that gives people better opportunities to go to places where they know they get better results, but it also puts pressure on us to think harder about how we get those better results," Gawande said.
Doctors' groups such as the American Academy of Family Physicians, the American Heart Association and the American Society of Clinical Oncology provide patient-friendly Web sites that answer common questions, connect patients to other resources and remind them what to ask their doctors.
With the help of the Internet, patients are more aware of the portfolio of treatments for heart disease, said Dr. Clyde Yancy, medical director of the Baylor Heart and Vascular Institute in Dallas.
Patients often resist making lifestyle changes and lowering their risks, he said, but those who use Web sites such as the American Heart Association's Heart Profiler increase the chances they will comply with treatments.
"The next time you interface with that patient, they may have an understanding and may even have a sense of urgency," Yancy said. "That's a wonderful day in the office because you can really make some headway."
Diane Blum, editor in chief of the American Society of Clinical Oncology's Web site called People Living with Cancer, said reputable sites that suggest questions to ask the doctor or help patients locate clinical trials perform a vital service.
PLWC.org now details 100 cancer diagnoses, up from 25 when it launched five years ago. It has expanded offerings on coping with cancer and survivorship as more people are able to treat it as a chronic condition.
As more people go online for health information, the shift in expectations between doctors and patients is likely to be permanent, Blum said.
"Doctors are getting used to and valuing the more participatory and educated patient," she said. "With the baby boomer generation aging and moving into the prime years of cancer diagnosis, you're going to see more of this interaction."