The Internet is empowering its users more than ever, but the same technology that allows people access to limitless information has also enabled some to combat scientific or medical authority with their personal experiences.
In a recent study published in the journal Social Science & Medicine, Oregon State University sociologist Kristin Barker and graduate student Tasha Galardi looked at the reactions of breast cancer survivors in the wake of the new guidelines published in 2009 by the United States Preventative Service Task Force. Departing from established recommendations, the new guidelines recommend against routine screening mammography for women in their 40s, and suggest that women ages 50 to 74 be screened every other year instead of annually. The guidelines generated media attention and elicited intense anger from breast cancer survivors.
Sampling some of the most popular online breast cancer discussion forums, the researchers found that women used the Internet not only for solidarity and sharing their personal stories, but also to collect their own experiences as a type of evidence to contradict the task force’s recommendations. The women were upset because their shared experiences with breast cancer confirmed established wisdom that mammography saves lives, especially theirs.
“We wanted to look at this disconnect between medical and lay expertise, and the outcome in terms of reaction and action from online communities,” Barker said.
The researchers did not endorse or reject the task force’s recommendations, but instead were more interested in how women used online forums to engage and communicate. One of the repeated messages they saw in the forums was that women used their personal stories to combat scientific findings.
For instance, the report stated that 1,904 women ages 40 to 49 must undergo routine screenings in order to find one person with breast cancer who would benefit from treatment. Studying hundreds of online postings, the researchers found multiple threads of women declaring themselves to the “the one” in 1,904.
For these women, breast cancer is a personal issue, not a statistical abstraction.
“What is more compelling than your own personal experience?” Barker said. “It is not likely that a scientific study can discredit your own experience.”
Barker, an associate professor at OSU, also noted that the controversy around the task force guidelines was heightened because they came out just as the debate over national health care was spiraling through the media. In addition, the women’s negative reactions to the new guidelines were intensified by their online connection to so many others who shared their breast cancer experience.
“Coming together online and finding a support network can be empowering, especially for women who sometimes feel shut out of the process,” Galardi said. “These women have a form of expertise that they feel should be considered by medical experts.”
According to Barker, the take-away message of this research is that because of the Internet, medical information continues to become more democratized and this sort of group dynamic found in online forums will have a lot of credibility.
“The public’s ability to challenge medical authority means the balance of power is shifting, and will continue to do so,” she said. “Public policy officials would be wise to take lay expertise into consideration.”