Friday, October 30, 2015 — A hierarchy of survivorship is developing within the online breast cancer community, according to a data analysis released today by leading healthcare insights company Treato. Timed to Breast Cancer Awareness Month, the company collected and analyzed online conversations happening about BRCA testing, a gene test that determines if a woman has a mutation that drastically increases her chances of developing breast cancer. Online conversations discussing BRCA were collected two years before (2011), around (2013) and two years after (2015) Angelina Jolie’s public announcement about her double mastectomy due to a positive BRCA diagnosis. An in-depth analysis revealed that how women are discussing the choice to have a preventative double mastectomy after a BRCA-positive test has shifted significantly since Angelina Jolie made her public announcement. Over the past year a hierarchy of survivorship has developed within online communities between women who received a breast cancer diagnosis and had a double mastectomy and those who tested positive for the BRCA gene and had a preventative double mastectomy. In online conversations analyzed from popular breast cancer forums from women who have received a breast cancer diagnosis, Treato found they have created a survivorship ranking that works towards excluding those who chose a preventative double mastectomy because they have a BRCA-positive gene (a gene that puts their chance of developing breast cancer up to 70 percent by the age of 70) because they have never had a “true” cancer diagnosis. In response, BRCA-positive women who are increasingly referring to themselves as “previvors” are talking about feeling alienated from the larger breast cancer community.
In addition, Treato discovered that the online decision-making process and stated rationale for having a preventative double mastectomy in response to a positive BRCA test has shifted since Angelina Jolie’s public double mastectomy announcement. Previously women discussed having the procedure done to avoid getting breast cancer, but this past year women have shifted the decision framework, providing the rationale that they have chosen a preventative mastectomy in order to avoid a lifetime of fear and anxiety and constant worry about eventually getting breast cancer.
Language surrounding the question about whether to get tested for BRCA or not has also shifted. Previously, discussions regarding BRCA testing revealed a community supportive of testing for the sake of the individual’s knowledge but only if the individual was willing and ready to undergo preventative measures such as a double mastectomy if the result was positive. Today, however, women are discussing the necessity to pursue testing out of familial obligation for their loved ones and children to know whether they also have the gene mutation and are also at risk.
"It's clear that women on either side of the survivor-previvor divide want their voices to be heard and their unique experiences to be valued," says Ido Hadari, CEO of Treato. "Whether you're a physician or newly diagnosed BRCA-positive patient, it's important to understand the dynamics across these two groups and how they can affect a woman's treatment decision-making process."
Find out more information here on Treato’s BRCA data analysis
Treato Voice is a unique data asset that continuously collects, indexes and analyzes more than two billion patient and caregiver conversations happening across the Internet to understand what patients are saying about their experiences with their conditions and treatments.
For this BRCA data analysis Treato identified more than 9,500 online conversations discussing BRCA testing. Of these, 675 posts were chosen for deeper analysis across the healthcare forums of breastcancer.org, cancer.org and reddit.com. From each healthcare forum 75 posts were selected from each time period before (2011), around (2013) and two years after (2015) Angelina Jolie’s public announcement about her double mastectomy for further analysis. Posts analyzed included women with positive BRCA tests, women with negative BRCA tests, women with breast cancer a diagnosis and women with an unspecified status discussing BRCA.