Cancer patients are using web-based diaries to share treatment experiences. But some advise caution.
If your only encounter with information spread by bloggers is what you hear on the nightly news, you might think that cyberspace consists solely of political activists whose goal is playing gotcha with political leaders and members of the media. (Last September, bloggers—people who publish sites known as web logs—were responsible for revealing flaws in a 60 Minutes II report by Dan Rather about President Bush’s military record. And, more recently, they exposed the real identity of a fake journalist admitted into White House press briefings.) But type in “cancer blog” in the search field on Google and more than 100,000 results show up. In addition, the Internet is flooded with people searching for health information—some 97 million, according to a 2001 Harris Interactive survey.
The explosion of blogs—commonly described as frequently updated, chronologically ordered web-based diaries—has quickly become a central component of online culture. According to a recent report by the Pew Internet & American Life Project, a nonprofit initiative of the Pew Research Center for People and the Press, 7 percent of the 120 million U.S. adults who use the web say they have created a blog site. And 27 percent of web users say that they are blog readers, an increase of 58 percent last year alone.
And what many of those readers are seeking is information about their cancer. Jerry Mayfield, 56, a veteran blogger of six years, says he gets between 1,000 and 4,000 visits a day to his blog site, Jerry’s Diary, where he chronicles his progress battling chronic myelogenous leukemia —and even more visits on the days when CML is in the news. “Weeks after Gleevec® (imatinib, an effective drug against the disease) was approved, traffic on my site was so high it almost crashed the server,” he says.
Mayfield’s web diary grew out of a site he launched in 1999, when he was first diagnosed with CML and in a phase II clinical trial for Gleevec. “The drug was proving to be a miracle treatment for CML patients,” says Mayfield. “But there were a lot of patients—and doctors—who didn’t know anything about the drug, so I launched the site to spread the word about how well that trial was going.”
Although he initially did well on the drug, it soon proved resistant against his strain of the disease. In November 2003, Mayfield was placed in a phase I trial of dasatinib (BMS-354825), a drug reportedly more potent than Gleevec, and started publishing his results on his blog. He’s now in remission.
Proceed With Caution
Mayfield says he launched his site to pay back a medium he credits with saving his life. “I’m convinced that I wouldn’t be here today if it weren’t for the Internet. My disease is fairly aggressive and I found out about Gleevec from one of the online CML discussion groups. There were some patients in a phase I Gleevec trial and they said how well they were doing. And I knew that I had to position myself with the doctor at M. D. Anderson Cancer Center (in Houston), who was one of only three people in the world conducting these trials, so I could get the drug if I needed it,” says Mayfield. “Within four months I became one of his patients.”
But Mayfield admits he worries that publishing clinical trial information, including drug side effects, before the full results appear in scientific journals may be detrimental for some patients. “I know it’s a juggling act,” he says. “I don’t want people to get false hope, but at the same time I want to keep them informed about something they need to know about. There are a lot of patients who have no options left and it’s those patients that I’m trying to reach.”
Clifford Hudis, MD, chief of the Breast Cancer Medicine Service and associate attending physician at Memorial Sloan-Kettering Cancer Center, worries, too, that bloggers may sometimes be spreading erroneous information. “The problem with posting clinical trial data is that it may just be wrong, because a patient’s impression of the results of the treatment may not jibe at all with what’s going on with the drug in development.”
Warner Slack, MD, professor of medicine at Harvard Medical School and co-director of the Division of Clinical Computing in the Department of Medicine at Beth Israel Deaconess Medical Center in Boston, agrees. “If someone presents a personal account, the one-trial experience can be at once very informative but not statistically significant,” he says. Dr. Slack advises patients to seek out information from several online sources and talk over the findings with their physicians. “The conservative approach would be to take a message from a patient and then go to one of the tried and true sites like the National Library of Medicine at the National Institutes of Health website (www.nlm.nih.gov) and check things out. And do an online search to see if other patients have had similar experiences.”
As long as precautions are taken, Dr. Slack says the Internet can be an empowering tool for patients. “Patients who want to [be proactive in their healthcare] should be encouraged to participate in the decision-making in their medical care. From my perspective, the more a patient participates as our colleague and partner in medical decisions, the better the process will be. Keeping a patient in the dark is a potential source of errors because a doctor might think something about the patient that the patient knows is wrong,” he says.
While posting information about their health status is a First Amendment right, Dr. Slack cautions patients not to reveal details they wouldn’t want read by potentially everyone in the world. “When you’re in the privacy of your home, you tend to forget that what you write online will be accessible to everybody,” including employers and health insurers, he says. “I certainly wouldn’t put anything out on the web for the general public to see that is contrary to what you’ve written on a job application or what your health insurance company knows about you, for example. But I’m assuming that there is honesty on the part of bloggers. It would only be a big issue if someone were being deceitful.” As long as possible privacy risks are considered, he says, writing about their experiences with cancer can be liberating for patients.
“There are two approaches to confidentiality—one is to do our best to protect it, and the second is to destigmatize problems. Cancer used to be not only a tragic affliction but also an embarrassment. People didn’t talk about their cancer, so one idea is that there would be less and less reason for patients to be worried about other people knowing about their disease. On the other hand, it should be up to each patient to control as much as possible what he or she wants to keep private.”
The bottom line? The blogosphere can be a wonderful online community where patients get to virtually meet each other and share information. But it can also be a place where erroneous information is spread. Before taking any advice found online, double-check it with reliable sources such as websites affiliated with associations like the American Cancer Society (www.cancer.org) and talk to your physician