Productive potential
"The Internet can be incredibly useful," agrees Susan DeCristofaro, R.N., M.S., O.C.N., C.N.S., patient and family education specialist at Dana-Farber. "It enables patients and families to become better informed about particular diseases, treatments, and available resources."
DeCristofaro directs the Maxwell and Eleanor Blum Patient and Family Resource Center, located in the Institute's main lobby, and two satellite sites. Patients may also visit the Houghton Mifflin Patient and Family Resource Room in the Institute's Gillette Center for Women's Cancers. In addition to books, brochures, and videos, these facilities provide Internet access and assistance for patients and families.
Education Specialist Susasn DeCristofaro talks to visitors in the Blum Center.
DeCristofaro says people use the Internet for a variety of reasons. Some want to know more about a particular cancer, treatment, or alternative therapy. Others want information about clinical trials. Still others are looking for advice about how to cope with their emotions and the side effects of treatment. When the sites are reliable, this can make a visit to the doctor much more productive: The patient arrives armed with a broad understanding of a disease and is prepared to ask relevant, well-informed questions.
But DeCristofaro also sees a downside. "I worry about the negative experiences," she says. "On the Web, you'll find sites posted by individuals with no medical background as well as those reviewed by medical professionals — and it's hard to tell the difference. Those personal sites can lead patients in the wrong direction."
That is exactly what a team from the University of Michigan concluded after examining 400 Web sites for information about Ewing's sarcoma, a rare type of bone cancer. The researchers found that about six percent of Web sites visited contained information that was actually wrong, and even more contained information that was, at best, misleading. For instance, estimates of how many people will survive Ewing's sarcoma varied widely — from five to 85 percent among the Web sites visited. Yet, most oncologists agree, 70 to 75 percent of people will survive this type of cancer.
When researching more common cancers, it is easy to become overwhelmed. For example, there are more than 60,000 Web pages that refer to breast cancer alone. And information about alternative therapies is often contradictory. Shark cartilage as a cancer treatment? One site says it inhibits the development of new blood vessels so tumors don't grow. Another says, appropriately, that it is worthless.
It is all too easy for a well-intentioned patient to become confused about a particular cancer or the proper way to treat it. That can result in time wasted as the physician answers questions that aren't relevant or spends time trying to dispel misinformation gathered by the patient during an afternoon of Internet surfing.
- Next: Tips for savvy Web surfing
- Page: 1 | 2 | 3
