I’ve been thinking a lot about awareness-raising lately because of a bombshell report from the 2019 American Heart Association National Survey released this month.(1) Among other completely demoralizing findings, this report found that women’s awareness of their most common heart attack risks and symptoms has significantly declined from a prior survey done 10 years earlier. How is that even possible? . . .
Reading the AHA survey report made my brain explode. I felt sick. I simply could not believe what I was reading in the latest issue of the cardiology journal, Circulation. “A decade of lost ground” is how the official commentary from the American Heart Association bluntly described their survey’s stunningly awful results.
Whatever we are doing to raise awareness about women’s heart disease – it’s not working.
It feels even worse when the bearer of such news is the very organization that brings us the massive Go Red For Women awareness campaign each February. As the AHA’s own website boasts:
“Now in more than 50 countries, Go Red For Women is a global phenomenon. From Go Red fashion shows, luncheons and campaigns, this campaign helps women improve their health and the health of their families.”
Or does it?
Here’s what this latest AHA National Survey report discovered:
- Women were more likely in 2019 than a decade ago to mistakenly believe breast cancer is their leading cause of death. Younger women in particular were more inclined to say this.
- Awareness of heart attack symptoms declined among all women. Only 52 per cent of women knew that chest pain was a symptom, and 38 per cent knew that pain that spreads to shoulders, neck or arms was a symptom. Only 28 per cent knew that shortness of breath was a symptom.
NOTE FROM CAROLYN: It was at approximately this point in reading the original report when I had to go have a wee lie down just to recuperate from what I’d read so far. . .
- Women with high blood pressure were 30 per cent less aware than women in general that cardiovascular disease is the leading cause of death among women.
- Awareness of what to do if having heart attack symptoms was mixed. Knowledge that women need to call 9-1-1 was up from 47 per cent in 2009 to 54 per cent in 2019, but knowing they should take an aspirin was down from 23 per cent to 14 per cent over the 10-year period.
- The greatest declines in overall awareness of heart disease were among Hispanic women with an 86 per cent decline, Black women with a 67 per cent decline and younger women 25-34 years of age with an 81 per cent decline.
So in the interests of accuracy, and to correct some misconceptions that appear to be more pervasive now than a decade ago, here are some FACTS about women and heart disease (as summed up in the Heart and Stroke Foundation’s comprehensive annual report entitled“Ms. Understood”):
- -Five times as many women die from heart disease as breast cancer.
- -Heart disease is the leading cause of premature death for women.
- -Early heart attack signs are missed in 78% of women.
- -Every 20 minutes, a woman dies from heart disease here in Canada.
- -Women who have a heart attack are 50 per cent more likely to die within the first year compared to our male counterparts.
- -Two-thirds of heart disease clinical research focuses only on (white, middle-aged) male subjects.
Ooops. . . See what I just did there?
But most people, unless they have become personally involved (as either a freshly-diagnosed heart patient or as the loved one of such a patient) are simply not motivated to learn about a medical condition that they don’t believe will ever affect them – any more than I was before my own heart attack.
Heart disease did not matter to me until it happened to me.
Yet it appears that we’re still using the awareness-raising communication tools we’ve always used: more facts, more data, more information – and now look how that has turned out.
Right now, I have far more questions than answers about how we should respond to this report – all of us, from big organizations like the American Heart Association, WomenHeart: The National Coalition for Women with Heart Disease, The American College of Cardiology’s CardioSmart, the Heart and Stroke Foundation or academic-based women’s heart centres – to individual heart patients like our 900+ patient educators throughout the U.S. and Canada, all grads of the WomenHeart annual training since 2002.
But it seems evident that throwing more information at women stopped working at some point during the past decade.
Dr. Virginia Howard at the University of Alabama (one of the co-authors of this report) summed up her own dismay at what she called this “highly concerning trend”:
“Preventing heart disease remains our Number 1 priority — we should be as close as possible to 100 percent awareness.”
We should be, but here’s the warning from Ann Christiano and Annie Neimand at the University of Florida’s Center for Public Interest Communications. As they wrote in their report called Stop Raising Awareness Already, published in the Stanford Social Innovation Review:
“Because abundant research shows that people who are simply given more information are unlikely to change their beliefs or behavior, it’s time for activists and organizations seeking to drive change in the public interest to move beyond just raising awareness.”
It’s also basically what Amy Johnston, a PhD student and researcher at the University of Ottawa Heart Institute, also said when she Tweeted her own response to this report:
“I think all of this shows that we NEED to think outside the box. It’s like saying we can recruit more women into clinical trials by simply putting up more posters.
“Doing the same thing over and over again does not work.”
One concerned reader on Twitter wondered after seeing this report: have we ever thought about asking a celebrity who has been diagnosed with heart disease to help raise awareness?
My response: “We’ve not only thought of it, but every time we hear about another celebrity being diagnosed, we get excited by the fantastic news! Yet another great opportunity to raise awareness!!”
Amy Johnston’s compelling image of putting up more and more posters, doing the same thing over and over again, is an apt metaphor: our messaging about women’s heart health has been buried under growing piles of metaphorical posters out there.
Christiano and Neimand describe most awareness-raising campaigns as “wasting a lot of time and money for important causes that can’t afford to sacrifice either.”
I just don’t know. Perhaps the big organizations might want to shift some of their revenues next year usually reserved for raising awareness to consulting with the University of Florida’s Center for Public Interest Communications – to learn why public awareness campaigns so often fail to reach their stated objectives.
1. Cushman M, Shay CM, Howard VJ, Jiménez MC, Lewey J, McSweeney JC, Newby LK, Poudel R, Reynolds HR, Rexrode KM, Sims M, Mosca LJ; on behalf of the American Heart Association. “Ten-year differences in women’s awareness related to coronary heart disease: results of the 2019 American Heart Association National Survey: a special report from the American Heart Association.” Circulation. 2020;142:e000-e000.
Image: by Rafael Zajczewski at Pixabay
Q: Why have women’s heart disease awareness levels fallen so badly in the past decade?
NOTE FROM CAROLYN: I wrote much more about facts, data and information about women’s cardiovascular disease in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 20% off the list price).
-my follow-up piece called When a Red Dress Just Isn’t Enough to Raise Awareness
-the full statement from the American Heart Association called “Ten-Year Differences in Women’s Awareness Related to Coronary Heart Disease: Results of the 2019 American Heart Association National Survey: A Special Report From the American Heart Association“
–Am I having a heart attack? (every possible cardiac symptom I could think of)
–Women fatally unaware of heart attack symptoms (by the way, I wrote this article back in 2009)