Research Notes: The Angelina Effect

The second most popular Pop Health post of 2013 was "Angelina Jolie's 'Medical Choice' Dominates the Internet" (May 14, 2013).  In that post, I highlighted several public health implications of her op-ed that were being discussed in the media coverage-

(1) Angelina as a "champion" for breast cancer prevention: would her celebrity status help or hurt the cause?
(2) Legal and policy issues with BRCA genetic testing.
(3) Health communication (specifically regarding risk perception).
(4) Reviewing the evidence base for recommending BRCA testing or preventative mastectomies.

When celebrity health stories such as this are publicized, I always keep my eyes peeled to see if any evaluation research or subsequent stories follow.  So I was thrilled to see a peer-reviewed paper released last week that examined the impact of her op-ed.  Authors of "The Angelina Effect: Immediate Reach, Grasp, and Impact of Going Public", conducted a survey which asked participants to report their understanding, reactions, perceptions, and subsequent activities related to the story.  The researchers were especially interested in the public's ability to distinguish the genetic context of Angelina's risk of Breast Cancer from the lower risk that characterizes the vast majority of women who do not carry a BRCA mutation.

Some key findings:

• Approximately 75% of sampled adults were aware of Angelina's choice to undergo a double mastectomy to reduce her risk of developing Breast Cancer.

• Of those aware of her story, only 3.4% indicated that they had read her op-ed originally posted in the New York Times.  Instead, most became aware of the story through the national/local news (61.2%) or entertainment news (21.5%).

• Among respondents that correctly reported Angelina's risk of developing Breast Cancer, fewer than 10% had the information necessary to interpret her risk relative to a woman unaffected by the BRCA gene mutation.

• The majority of respondents (80%) did not report any health-related actions (e.g., speaking with a doctor or genetic counselor) in the 3 weeks between the op-ed's publication and survey completion.

The authors' conclusions have important implications for those of us that lead health communication efforts- especially those efforts that intersect with the popular media:

"While celebrities can bring heightened awareness to health issues, there is a need for these messages to be accompanied by more purposeful communication efforts to assist the public in understanding and using the complex diagnostic and treatment information that these stories convey."

What Do You Think?

• Are you surprised that Angelina's op-ed did not result in significant knowledge or behavior change among readers?
• Should we retire "awareness" as a public health goal since it often does not lead to knowledge or behavior change?
• Since most respondents were not able to distinguish Angelina's cancer risk from women who do not carry the BRCA gene mutation, could the op-ed do more harm than good?
• This survey was conducted within 3 weeks of the op-ed publication; are there questions you would like to see asked in a longer-term follow-up survey?

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Angelina Jolie's "Medical Choice" Dominates the Internet

I woke up this morning to the quintessential Pop Health story.  Angelina Jolie published an op-ed called "My Medical Choice" in the New York Times.  She talks about undergoing a preventative double mastectomy in February 2013 after genetic testing revealed that she carried the BRCA1 gene.

As I inventoried her column and the online chatter today, I worried that I missed the boat!  Dozens of bloggers and news outlets wrote about her op-ed within hours of its posting...what else could I add to the conversation?

With so many posts for readers to sift through- many of which focus on very specific issues (e.g., the efficacy of preventative mastectomies)- I decided to add to the conversation by cataloging the public health implications being discussed:

Angelina as a "champion" for breast cancer prevention: will her celebrity status help or hurt the cause?:  Most of the articles and comments that I read in response to her op-ed were overwhelmingly positive.  This is exemplified by an open letter on KevinMD.com written by Dr. James Salwitz.  He praises Angelina for her bravery and leadership in the battle against breast cancer.  He goes on to state, "Your action will save more lives than all the patients I could help, even if I were to practice oncology for hundreds of years".  On the flip side, a few writers/commenters raised the concern that Angelina's influential status in conjunction with her decision to have surgery could cause women to panic about their own breast cancer risks.  For example, David Kroll writes for Forbes, "For all the bravery of Ms. Jolie and the positive groundswell that her op-ed generates, I also want to be sure that women with breast cancer - women who are already scared - do not feel the extra burden that they’re not doing enough if they don’t consider a double mastectomy".

I thought that Linda Holmes (of NPR's pop culture blog) did a really nice job of reconciling Angelina's role as both "celebrity" and "champion" in her post called "Why Angelina Jolie's Op-Ed Matters".

Legal and Policy Issues:  BRCA Genetic Testing:  On April 15, 2013, the Supreme Court heard oral arguments challenging Myriad Genetics' patents on "the breast cancer genes".  As a side note: I do not remember hearing about this story last month- perhaps because the Boston Marathon bombings also took place on April 15th?  The concern is that such patents inhibit scientific advancements, keep testing costs high- and therefore limit access to the testing.  Angelina alludes to this in her op-ed when she reveals that the BRCA1 and BRCA2 testing costs approximately $3,000 in the U.S.  Sarah Kliff from The Washington Post notes that this testing "is about to get significantly less expensive: The Affordable Care Act included the genetic test among the preventive services that insurers are required to cover without any cost sharing".

Health Communication- Risk Perception:  Nancy Shute wrote an interesting piece for NPR entitled, "Angelina Jolie and the Rise of Preventative Mastectomies".  She interviews Dr. Todd Tuttle, who raises concerns about women overestimating their risk of breast cancer (in the other breast after being diagnosed on one side) and choosing more invasive treatment like mastectomy when not medically necessary.  Shute also discusses some potential contributors to the increases in risk perception and preventative mastectomy. For example, she mentions advancements in breast surgeries/reconstructions and the "hyper-awareness" of breast cancer resulting from ubiquitous pink ribbon campaigns.  Many of these contributors were discussed two weeks ago in the must-read The New York Times Magazine article "Our Feel Good War on Breast Cancer" by Peggy Orenstein.

Reviewing the Evidence Base for Recommending BRCA Testing or Preventative Mastectomies:  Many articles focused on reviewing what we know about the effectiveness of (1) BRCA testing for predicting cancer and (2) mastectomies for preventing cancer death.  Several articles linked to the CDC feature, "When is BRCA Genetic Testing for Breast and Ovarian Cancer Appropriate"?  Sarah Kliff discusses why "Most Women Probably Shouldn't Get the Cancer Screening Angelina Jolie Did".  NPR linked to a 2010 Journal of the American Medical Association (JAMA) article that provided the "clearest evidence yet that women carrying the BRCA1 and BRCA2 genes should consider preventive surgery because they are at a very high risk for breast and ovarian cancers."

With so many articles and blogs to sift through, I could probably keep going.  But I'd like to stop and hear from you:

• What other public health implications could result from Angelina Jolie's disclosure in today's New York Times?
• How do you think her disclosure could impact the issues I've raised above- risk perception, policy decisions, etc?
• I've linked to some of the articles that I read today- are there others that you would recommend to me and Pop Health readers?

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