Patient forums to challenge medical findings
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.
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…
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 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.”
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.
Barker, Kristin. The Internet reveals disconnect between medical and lay expertise. Medical News Today, 2nd of June 2011.
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