Study shows impact of the “Angelina Jolie effect”

Almost two years after celebrity Angelina Jolie discussed her decision to have a preventative double mastectomy in the New York Times, numbers have now rolled in to assess the impact Jolie’s message had on cancer screening.

In short: Her announcement mattered, based on findings by AARP, which used Internet data as well as insurer information from Optum Labs to determine if the celebrity’s announcement did more than trigger a ripple of stories about the story (such as the coverage in magazines People and Time).

Jolie did not have cancer, but her mother died of cancer and Jolie carried a mutation of the BRCA1 gene, which increased her risk of developing the disease. Mutations to either the BRCA1 or BRCA2 genes are linked to an increased risk. The National Cancer Institute says the mutations are associated with between 20% and 25% of hereditary breast cancers and 15% of ovarian cancers.

Among the findings: The number of Wikipedia searches for BRCA testing surged to 30,000 the day Jolie’s NYT piece was published, compared to 800 searches the day before, and the National Cancer Institute’s preventative mastectomy fact sheet had 69,000 page views that day compared to just 87 the week before.

Further, a scan of insurance claims showed that three out of 10,000 women with private insurance ages 35 and older were screened for the gene the month Jolie went public, up from between 2% and 2.5% out of every 10,000 between January and April of that year. Researchers also found that the message had staying power and BRCA testing levels remained high for the duration of 2013.

They also found that while women with cancer diagnoses dominated patient groups seeking BRCA testing before Jolie’s piece ran, they were soon lapped by the number of women who sought testing after the piece ran, even though, like Jolie, they had not been diagnosed with cancer.

Even accounting for additional influences, such as the Supreme Court’s ruling that BRCA screening company Myriad could not patent naturally occurring gene sequences (a patent would have had an impact on screening costs), and the US Preventive Services Task Force’s then-recommendation (since finalized) that high-risk women receive genetic BRCA counseling and testing — the researchers conclude that Jolie’s message and the spinoff coverage are responsible for the surge in patient awareness and action.

Among the metrics supporting their conclusion is that the surveyed insurer did not change its policy regarding screening, which indicates an easing of pricing or screening criteria were not associated with the uptick.

The researchers also note that the experience highlights an important educational oversight, which is that while readers picked up on the fear of risk, they were unclear on how worried they should be. They found that a survey conducted one month after Jolie’s announcement revealed that “less than 10% of respondents accurately estimated Jolie’s risk of developing breast cancer relative to someone without the BCRA mutation.”

They write that this is a concern because the information gap could trigger unnecessary testing, or even unnecessary surgery, if patients are unable to provide personal context to a broader risk message. They also note that the reaction to Jolie’s reveal indicates what they refer to as a “learning window,” by which they mean a period in which educational messages can jump in and provide this critical information.