|Growing Disconnect Between Medical and Lay Expertise|
|SciMed - Healthcare|
|TS-Si News Service|
|Saturday, 04 June 2011 02:00|
Corvallis, OR, USA. Scientific and medical authorities face increased resistance to their guidance from healthcare consumers that place greater value on theor own personal experience and the support of their peers.
While contemporary technologies encourage more convenient access to near-limitless information and the formation of affinity groups, they also enable more systematic resistance to authoritative knowlege transmitted from beyond their immediate circle.
To examine this phenomenon, sociologist Kristin Barker and graduate student Tasha Galardi at Oregon State University (OSU) looked at the reactions of breast cancer survivors in the wake of the new guidelines published in 2009 by the U.S. Preventive Services Task Force (USPSTF). Their findings appear in the journal Social Science & Medicine.
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.”
CitationDead by 50: Lay Expertise and Breast Cancer Screening. Kristin Barker and Tasha Galardi. Social Science & Medicine 2011; 72(8): 1351-1358.
This paper examines the reactions of women with breast cancer to the 2009 U.S. Preventive Services Task Force recommendations for mammography screening. Specifically, it analyzes electronic postings about the Task Force's recommendations from five breast cancer discussion boards between November 17, 2009 and December 17, 2009. Women's opposition to the recommendations is best understood as a clash between scientific and lay expertise concerning the priorities of medicine and notions of evidentiary significance. We highlight the connective logic — or connectivity — that underlies lay expertise in the electronic era. Connectivity is a unique way of knowing that emerges from an experiential connection to illness and a virtual connection to others with the same illness. Connectivity is based on forms of evidence that enhance the moral authority of lay claims for medical succor. Connectivity is a potent element in contemporary lay challenges to scientific expertise and will become increasingly influential as online illness affiliation becomes ever more commonplace.
|Last Updated on Friday, 03 June 2011 20:51|