Breast cancer online forum proves its worth

May 26, 2006

A University of Texas analysis of an Internet mailing list about breast cancer shows that users of online medical forums check the facts when presented with Web-based information. The findings challenge the notion about the accuracy and reliability of medical content on the Web.

A University of Texas analysis of an Internet mailing list about breast cancer shows that users of online medical forums check the facts when presented with Web-based information. The findings challenge the notion about the accuracy and reliability of medical content on the Web.

Several previous studies have indicated that almost half of the women diagnosed with breast cancer rely on the Web for health-related information. Findings also suggest these patients will make important treatment decisions based on this content. Practitioners worry that some patients may choose not to discuss treatments found online or question clinical recommendations if misled by incomplete or inaccurate data.

Researchers at UT's School of Health Information Sciences and MD Anderson Cancer Center in Houston attempted to determine how often false or misleading statements occurred in messages posted by Internet-based cancer support groups. They also studied whether these statements were identified by group users as false or misleading and if they were corrected by other participants in subsequent postings.

Lead investigator and graduate student Adol Esquivel chose the Breast Cancer Mailing List , a public-access support community available online since 1994 for women and men with breast cancer. Esquivel and colleagues reviewed all messages posted to the list from January through April 2005 to identify false or misleading statements.

The investigators found that members of the Web-based support group usually provided accurate information to breast cancer patients seeking advice and guidance. But when they didn't, participants corrected errors in haste. Researchers published their findings in the April 22 issue of the British Medical Journal.

Investigators reviewed a total of 4600 postings organized into 1378 threads that yielded a total of 32 (0.7%) statements containing apparently false or misleading information. Ten of these 32 statements proved to be false or misleading when checked against relevant literature and by consensus among three reviewers (a general practitioner, an internist, and a breast cancer surgeon).

Six of the mailing list members, three of whom posted false or misleading comments, corrected seven of the 10 statements found by Esquivel's group. List members took an average of four-and-a-half hours to identify false or misleading statements after the posting appeared on the Web.

"Our findings reflect a maturing medium in which participants are more likely to critically evaluate information. In addition, because participants may have already experienced phases of the disease, they can provide accurate information," the researchers wrote.

The study had several limitations. A single researcher identified the 32 statements deemed potentially false or misleading and, therefore, could have missed several more. Reviewers were not blinded to the study's hypothesis. While the mailing list group was large, it was only a single Internet cancer support group.

On the positive side, researchers chose a large list that relies on self-correction rather than a moderator's knowledge. More research is needed to find out whether the findings apply more broadly to other online communities and health topics, researchers said.

"Our findings suggest that, given a forum, the Internet can police itself," they said.

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