Social Media and Breast Cancer: A Call for Greater Diversity

Barbra's legacy is The Pinkwellchick Foundation.

Barbra’s legacy is The Pinkwellchick Foundation.

The embers are still glowing from the social media firestorm Emma and Bill Keller ignited over the past few weeks. The husband-and-wife journalists each wrote articles about Lisa Bonchek Adams, a young mom diagnosed with metastatic breast cancer in 2012.

Emma Keller, writing online for the Guardian, questioned Adams’ use of social media to publicly chronicle her cancer treatment. (The piece was subsequently withdrawn.)  Bill Keller’s NYT Op-Ed ran less than a week later and essentially portrayed Adams as a dying woman grasping at straws, suggesting her treatment equates to “endless ‘heroic measures’ that may or may not prolong life but assure the final days are clamorous, tense and painful.”

The Kellers obviously don’t understand metastatic breast cancer. The average metastatic breast cancer patient may receive eight or 10 different treatment regimens in sequence. Contrary to the Kellers’ representations, Adams isn’t on her deathbed. What Bill Keller describes as “heroic measures” are what the 155,000 of us with metastatic breast cancer would call “business as usual.”

The Keller/Adams controversy generated a lot of attention and traffic for all involved. But if it shows us the power of social media it also exposes some gaping deficiencies. A cursory look at those blogging, tweeting or otherwise commenting on this issue and metastatic breast cancer in general reveals a distinct absence of diversity.

Among the hundreds of breast cancer blogs, only about 25 or so that we know of feature people with metastatic disease. If there are African American patients blogging about their metastatic breast cancer their voices remain largely in the background. Barbra-Watson Riley one of the very few bloggers, died in November 2013. (The Pinkwellchick Foundation will continue Barbra’s work.)  Outside of the US, we know of a black British woman’s blog, “Afro Chemo.”

And yet, according to a 2012 Pew Internet Research Study, more than one quarter of online African-Americans (28%) use Twitter, with 13% doing so on a typical day. Major news outlets have recently done feature stories on BlackTwitter, “part cultural force, cudgel, entertainment and refuge,” according to the Washington Post.  So when it comes to breast cancer, shouldn’t there be more black social media voices? Shouldn’t we all be talking to each other? Are we missing opportunities to connect?

The Kellers, for all their fascination with Adams and metastatic breast cancer, had no comment on this December 20, 2013 New York Times story:

The cancer divide between black women and white women in the United States is as entrenched as it is startling. In the 1980s, breast cancer survival rates for the two were nearly identical. But since 1991, as improvements in screening and treatment came into use, the gap has widened, with no signs of abating. Although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.

According to NYT reporter Tara Parker-Pope, the gap in cancer survival cannot be explained away by biological differences in cancer between blacks and whites. While African-American women are at greater risk of a more aggressive form of cancer known as triple negative, those cancers account for only about 10 percent of diagnoses.

Carole Dickens is a nurse navigator with the CHN

Carole Dickens is a nurse navigator with the CHN

The New York Times article highlighted the work of The Congregational Health Network  (CHN) which builds upon the strong infrastructure of churches to reach deep into hard-to-reach and underserved communities. More than 400 congregations, including Baptist, Methodist, and Church of God in Christ, have signed up to be part of CHN, representing more than 15,000 patients. Eleven hospital employees, known as navigators, work with congregational volunteers, known as liaisons, to help congregation members make their way through the health-care system. The network offers weekly classes ranging from “Caring for the Dying” to “Mental Health First Aid.” More than 2,000 people have taken at least one class.

On the breast cancer front, Carole Dickens, a registered nurse and CHN navigator, visits congregations to present educational seminars and arrange mammograms and other screenings. This program is supported by Komen, the Avon Foundation and others.

A quick search reveals that people on Twitter are talking about CHN and its programs. This is a start–but we’ve all got to do more. Social media give us unprecedented communication power–but only if we use it proactively and creatively.

We desperately need more diversity in social media, especially when it comes to metastatic breast cancer.  We need to talk about why too many Americans continue to die from metastatic breast cancer before their time. We need to acknowledge that the black community is disproportionately represented. We need to make sure our efforts–online and in person–are inclusive. We need to do something now!

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25 Responses to Social Media and Breast Cancer: A Call for Greater Diversity

  1. katherinembc says:

    Reblogged this on ihatebreastcancer and commented:
    We desperately need more diversity in social media, especially when it comes to metastatic breast cancer. We need to talk about why too many Americans continue to die from metastatic breast cancer before their time. We need to acknowledge that the black community is disproportionately represented. We need to make sure our efforts–online and in person–are inclusive. We need to do something now!

  2. MBCNbuzz says:
  3. MBCNbuzz says:
  4. MBCNbuzz says:
  5. MBCNbuzz says:
  6. katherinembc says:

    Mind the gap: Public health's poor use of social media by @brettkeller et al http://t.co/9vL7PGdRDQ @JMedInternetRes @cmaer #hcsm— André Picard (@picardonhealth) February 5, 2014

  7. katherinembc says:

    And here are the slides http://t.co/VUROh2uFzJ #msk_hcsm14 #hcsm— Robert S. Miller, MD (@rsm2800) February 6, 2014

  8. […] thought-provoking post and a call for action from MBCN on the need for more diversity in social media, especially when it comes to metastatic breast […]

  9. katherinembc says:

    RT @HealthCollectiv: #Healthcare #SocialMedia is more than just buzz. Beyond the Buzz exclusive column with @JBBC http://t.co/SLScr5PiGT— Marie Ennis-O'Connor (@JBBC) February 9, 2014

  10. katherinembc says:

    New Think Tank of Leading Cancer Organizations to Chart the Future of Cancer Disparities Research http://t.co/IzZWS9BSpj— Julie Gralow (@jrgralow) February 15, 2014

  11. MBCNbuzz says:
  12. I am a black woman who is a breast cancer survivor and blogger. I was diagnose with stage 3 breast cancer in 2008. I actually started blogging (like most of us) as a way to keep my friends and family abreast of what was happening with me. Along the way, I realized that there were almost no voices out there like mine. As active as black people are online, I was very surprised that so few of us were actively blogging and talking publicly about our experiences. I am out of active treatment but I continue to blog about my journey as a survivor. I found this blog because I was working on a blog post but I had to stop and wave… and let you know that there was at least one more black woman in the blogosphere writing about breast cancer. I am not metastatic but I am here and I am active on social media.

  13. MBCNbuzz says:

    Thanks, Nicole for your post. Glad you are doing well and are an active voice in social media–so important! Keep up the good work!

  14. albook37 says:

    I am African-American and just diagnosed two weeks ago with Metastatic breast cancer. I found MBCN through a google search. I wondered if there was anyone like me in the network. Since I’m just starting out on this journey, I think this would be a good time for me to start blogging. I had breast cancer in 2008 and regretted that I did not document what I was going through. Thanks for the incentive to do it different this time.

    • MBCNbuzz says:

      Hi Albook, we have contacted you directly–we have some names for you. Also, note that Living Beyond Breast Cancer’s Metastatic Breast Cancer Conference is next month: http://www.lbbc.org/Events/Metastatic-Breast-Cancer-Conference
      April 26-April 27 just outside Philadelphia. MBCN’s Annual Conference is Sept. 19-21 in Chapel Hill, NC. Both conferences offer travel/hotel grants for those in financial need. Both are EXCELLENT places to make connections. Stay in touch!

  15. […] I did not know that although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease. […]

  16. […] I did not know that although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease. […]

  17. katherinembc says:

    @itsthebunk Consider inviting @blkwomenshealth @essencemag @EBONYMag to the table- all involved in health tweetchats #bcsm— P. Mimi Poinsett MD (@yayayarndiva) March 25, 2014

  18. katherinembc says:

    @itsthebunk also @RevAlethea is a strong advocate- both personal and professional experience #bcsm— P. Mimi Poinsett MD (@yayayarndiva) March 25, 2014

  19. katherinembc says:

    @itsthebunk also @doctorty is a physician and health writer for @theGrio part of #MSNBC— P. Mimi Poinsett MD (@yayayarndiva) March 25, 2014

  20. MBCNbuzz says:

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