Portfolio at NYU

Posted 03.24.04
[MAMM Magazine] Web of Medical Information
Is the Internet a friend or foe for patients and doctors?

By Jasmin Chua

Nothing says range of opinion quite as well as the Internet. With the explosion of health web sites, each trotting out their own expert points of view, a new revolution in healthcare is emerging and today's medical consumers are seeking a second, third, fourth, and often fifth opinion before settling on a diagnosis.

According to the Pew Internet and American Life Project, 93 million people, or eighty percent of Web users, have plied the Internet for information on specific diseases or medical problems and their treatments. "Certainly more and more people are turning to the Internet for their information," says Tom Ferguson, MD, physician-consultant and editor and publisher of The Ferguson Report, a newsletter tracking the online health phenomenon. "They're doing so because it's more convenient and effective than getting it from their doctors. In many cases their doctors are unable or unwilling to provide the information they may need."

With chronic diseases such as cancer, the family and friends of the person who is diagnosed are similarly affected. "All those people can't crowd into the doctor's office and learn from the doctor," says Susannah Fox, director of research at the Pew Internet and American Life Project. "However, they are able to go online in their own time and educate themselves about what's going to happen."

Still, there may be perils in information paradise. In May 2001, RAND, a research and development nonprofit, looked at English and Spanish-language web sites and found that answers to important health questions were often incomplete. For instance, only a few sites in either language indicated that a woman with a persistent breast mass and a negative mammogram needed further evaluation. RAND also ascertained that the average English-language web site lacked information about one in four of the topics that medical experts and consumer advocates thought were important to consumers, and that it wasn't uncommon for a web site to have conflicting information on a clinical topic.

A trick to ward off erroneous information, Fox says, is to check the source and the date of what is being presented. "Obviously with health information, who is putting forth an idea-whether it's the Journal of the American Medical Association or you know, [Jane Doe's] health web site-makes a big difference with something very serious like cancer treatment," she says.

While the quality of online health information is a concern among health professionals, most patients appear unperturbed, according to Dr. Ferguson. His opinion is that doctors don't understand the way the medium operates. Complete dismissal of the Internet because of a few irresponsible web site creators, he says, is like going to a cocktail party and declaring it a complete dud because someone at the party said something you didn't agree with. "It's like saying there's some bad information in print, therefore you should never use anything in print," he says. The new Internet-savvy patients are more discerning than most health professionals give them credit for and know how to self-moderate in online bulletin boards and discussion groups. "When somebody says something that others think might be questionable, it's usually immediately challenged," Ferguson says. "People know which members are somewhat off-the-wall and tend to ignore what they think isn't reliable."

Online support groups, in many cases, may add an entirely new dimension of care, even if it's just a virtual hand-hold. "Going through chemotherapy is such an intense experience both physically and emotionally," Fox says. "A doctor may not be able to give the patient what he or she needs, but a support group of people who have been through chemo or a mastectomy are able to [commiserate, share their stories, and lend support]." While these groups cannot replace doctors in clinical matters like making a diagnosis or prescribing treatment, they can help health-seekers cast a wider net for information beyond the pre-filtered, pre-processed material the doctor provides, throwing up for debate the old adage that Doc knows best. "Some patients want to be more involved and have more of a voice in decisions," Ferguson says. "For the activist, take-charge patient who wants to know everything about what's going on, these resources are transforming the experience of having a serious illness."

With patients increasingly able to access the same information as their doctors, the playing field is being leveled, says Alex Jadad, MD, director for the Centre for Global eHealth Innovation at the University of Toronto. "Most doctors would have a problem with this because we're used to holding most of the knowledge," Dr. Jadad says. "We're not used to being challenged or second-guessed." While some doctors may feel threatened, others welcome this new working relationship with their patient as an equal partner. The Pew Internet and American Life Project found that patients who came in loaded with Internet material but encountered dismissive attitudes from their doctors simply went underground in their research. "The genie is out of the bottle," Fox says. "People are not going back to the pre-Internet days of not knowing all the details of their treatment and diagnosis [even if it means being more informed and confused at the same time]."

Easier said than done, integrating the Internet into clinical practice is a minefield of unresolved issues, including time, money and questions of liability. "The first step would be to acknowledge that the Internet could or should be an important part of the process of care," Jadad says. "If we really believe that, only then can we start taking action."

In one e-health advocate's vision of a perfect world, doctors would stop digging in their heels and protesting the changes ushered in by the digital age. "We still pretty much have a healthcare system that's built for completely uninformed, uninvolved patients," Ferguson says. "I hope and trust that we will be able to evolve a new healthcare system that's more appropriate for this new generation of smart, empowered patients."

SIDEBAR

ACOR.org
Both Tom Ferguson of The Ferguson Report and Susannah Fox of the Pew Internet and American Life Project referred to ACOR.org (which stands for the Association of Cancer Online Resources) as a source of online support groups. Mailing lists are categorized by disease, side effects and other family, caregiver and survivor issues.

Oncolink.com
RAND gave Oncolink.com their seal of approval and in their report stated that the site "provided more than minimal, and completely accurate, coverage significantly more often than the average." Oncolink.com is a smorgasbord of clinical information, treatment options, ways of coping with cancer, and boasts a library of book and music reviews, peer-reviewed journals and other resources. You can also dash off a quick question to their panel of experts.

Others
According to RAND, other sites that provided at least minimal coverage for 70 percent of the breast cancer related topics for which they searched include cancernet.nih.gov, cancer.org, onhealth.com, and webmd.com.

Published in MAMM Magazine, Nov/Dec 2003