Tips for savvy Web surfing
Fortunately, there are steps patients can take to become more Internet savvy. One technique is to use search engines with caution. Some search engines poll the Web willy-nilly, coming up with 3,000 references to a single request. Others are more discerning, presenting a smaller, but far more reliable, pool of responses.
Another good technique is to visit sites hosted by universities, federal government agencies, and major patient organizations. The information at these sites usually has been reviewed by medical professionals, which decreases the chances of inaccuracies. Look for "seals of approval" by organizations such as Health on the Net, which monitors sites for accuracy and reliability. The Blum Center has a list of 80 recommended sites.
DeCristofaro also recommends that people learn to evaluate sites critically. Criteria include:
- Does the author (or sponsor) of the site have medical credentials?
- Is the information presented in a balanced, objective way, without sales pitches?
- Is the information current and comparable to other sources?
- Is the site well-organized and easy to use?
- Is the primary purpose of the site to educate?
Finding emotional support
Of course, the Web provides more than information. Dana-Farber patient Geri Malter (see First Person, p. 31) has survived liposarcoma, a rare cancer, for 16 years. "When I was first diagnosed, I wanted a support group," Malter says. "But it was eight or nine years before I met anyone else with this disease."
"When used with reliable sources [the Internet] can be an ideal 'just in time' technology that communicates relevant data to patients and families when they need it."
— George Demetri, M.D., Adult Oncology
Thanks to the Internet, that has changed. She joined an online forum on liposarcoma, part of a sarcoma forum that has hundreds of subscribers and many more visitors. "Many of them are patients' spouses or family members," Malter says. "The patient is so caught up in treatment, plus many have a hard time talking about their disease, that we can help provide much-needed perspective and support to family members."
But virtual contact sometimes has a cost. "A few of the patients on the list are now doing poorly," Malter says. "It's hard emotionally because we feel like friends. You connect, even if you don't actually meet. Sometimes I feel like I need to take a few days away from the computer."
Positives outweigh the negatives
However useful the Internet may be, usually a patient's best and most reliable source of information is his or her team of cancer specialists. In addition to caring for many patients with a specific type of cancer, specialists spend much of their time reading medical journals and attending conferences to learn the latest information about new treatments. Moreover, they know the patients as individuals. As good as particular Web sites might be, they can't come close to that type of experience.
Even with those caveats, Demetri, who is associate editor of the American Society of Clinical Oncology's Web site (www.asco.org), believes the positive aspects of the Internet outweigh the negatives. "I do a lot of communication with people over the Internet, making sure, of course, to provide general rather than individual-specific advice," says Demetri. "I feel I'm able to help a very large number of people. In that respect, the Internet can be a lifeline."
