by Carolyn Thomas ♥ @HeartSisters
This past spring, the non-profit Global Heart Hub hosted an international patient-led Roundtable meeting in Madrid, Spain. The striking parts of that sentence are the words “patient-led”. This event focused on late, missed and misdiagnosis of heart disease in women. These adjectives confused me at first because I had experienced all of them at the same time: for example, I had a late diagnosis of my ‘widow-maker’ heart attack because an Emergency physician missed my heart attack symptoms – central chest pain, nausea, sweating and pain down my left arm – and then confidently misdiagnosed them as acid reflux before sending me home, where it took two awful weeks before (extremely reluctant to make another fuss over nothing again) I finally forced myself back to that Emergency Department.
The Roundtable participants came to Madrid from 15 countries, and included women living with heart disease, patient organization leaders, public health experts, cardiac researchers and clinicians.What grabbed my attention while reading their recently published Roundtable report were the clear priorities identified up front on these four areas of urgent need.
And if female heart patients are ever going to stop being – as this report described our current reality – “under-studied, under-recognized, under-diagnosed and under-treated”, these issues must indeed be addressed urgently.
Importantly, this report avoids what I was whining about last week here (which was basically about cardiac studies describing only the ‘ain’t it awful?’ problems in women’s heart health care without equal weight for addressing the problem). In this 20-page Roundtable report, I went straight to the four practical recommendations in the section called Priorities for Improving Cardiovascular Disease Screening, Diagnosis and Treatment in Women.
My own take on each of the the four key priorities are in brackets, below:
♥ #1 Priority: Embedding women’s cardiovascular health in the medical education curriculum: (My absolute favourite recommendation: we have to reach our future doctors – and nurses- now. Currently, few if any med students learn about women’s unique cardiovascular health issues, and, as the report pointed out, “Even when such education is offered, classes are typically optional and may not include up-to-date research findings on women’s heart disease.” This training can no longer be optional).
And for comprehensive up-to-date research findings, see also: Nine Lessons about Women’s Heart Disease that Future Doctors will Learn in Med School
♥ #2 Priority: Calling for mandatory gender equity and sex-specific data analysis in cardiovascular research: (Most cardiac research in the past has been done on white, middle-aged men, whose results are not always applicable to female patients – which explains a lot. Even in the more recent $100 million ISCHEMIA heart study of 2019, only 23 per cent of its 5,000+ heart patients were women. And as long as high impact medical journal editors continue to accept submitted research papers like this for publication – even with such clearly lop-sided participation numbers – we’ll continue to have male-centric medical care as a result). See also: Modern Medicine is Male-Centric Medicine, and That’s a Problem for Women featuring Dr. Alyson McGregor’s work.
♥ #3 Priority: Launching a global awareness campaign on women’s cardiovascular health: (Increased awareness is intuitively one of the first goals believed to change attitudes and behaviours, but the reality is that, as the American Heart Association’s last national survey unfortunately revealed, women are less informed now than they were a decade earlier – despite years of massive and expensive ‘Go Red for Women’ public awareness-raising campaigns. Most women surveyed, for example, could not name chest pain as a cardiac symptom, and most still believe that breast cancer is our biggest killer. It is not: heart disease kills more women each year than all forms of cancer combined. See what I just did there? I too reflexively feel that what people need is more information, facts and data – even when experts tell us it doesn’t work.
Think about this: if more information, more facts and more data actually did work to effectively raise awareness and change attitudes, the anti-vax movement would have changed their minds by now.
This AHA survey’s appalling results were so upsetting to me, in fact, that I even stopped writing about women’s heart health for an entire summer, wondering: “Does anything I write or speak about even matter?” What I finally came to was: “
This does matter to women living with heart disease!”
But I now suspect that the general public feels much like I did, pre-heart attack:
“Heart disease did NOT matter to me until it HAPPENED to me!”
And as University of Florida researchers reported:
“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.)”
See also: Women’s Heart Disease: An Awareness Campaign Fail?
♥ #4 Priority: Prioritize cardiovascular health screening in women at primary and community care settings: (We already know that cardiovascular disease is the number one killer of women worldwide, yet – as the report found – it is “not yet standard practice to offer even basic heart health screenings to women.”
When I started my annual Saturday morning Cardiac Café presentations on women’s heart health at the University of Victoria, for example, we included trained “Take The Pressure Down” volunteers offering free blood pressure checks as the audience members were arriving. Over the five years we did these presentations, many of the women were shocked when told their blood pressure was too high – a known risk factor for cardiovascular disease. The Roundtable report also recommended including pharmacists and nurses for these community health screenings. I’d also add all physicians caring for any pregnant women experiencing pregnancy complications, another known cardiac risk factor unique to women. Previous studies(1) in the U.S. have found that blood pressure screenings in barbershops, churches and other community venues in black neighbourhoods resulted in significantly greater reduction in blood pressure numbers to help promote heart disease and stroke prevention.) See also: Do You Know the New Heart Health Guidelines for Women?
The Madrid Roundtable report concluded with this encouraging message:
“Being driven by patients, this initiative ensured that these recommendations are patient-centred and targeted towards addressing women’s specific needs and concerns.”
It’s too early to see the ultimate outcomes of assigning ambitious priorities, but could this be the kickstart needed to amplify the voices of women and their cardiologists to finally address the appalling disparity between men’s and women’s cardiac research, diagnoses, treatment and outcomes?
You can read the Global Heart Hub Roundtable report here.
1. Schoenthaler, A. “The FAITH study (Faith-Based Approaches in the Treatment of Hypertension.” Circulation Quality and Outcomes. Volume 11, Number 10. 9 October 2018.
Heart image: GDJ at Pixabay
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Q: What strikes you as the most urgent of the four priorities from this Roundtable?
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NOTE FROM CAROLYN: I wrote much more (about facts, data and information, and mostly about what to expect when you become a heart patient!) 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 30% off the list price).
Heart Sisters 
Thank you for sharing this information. Global Heart Hub is doing great work.
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Thanks Stephanie – I loved the part where this event was “patient-led!”
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I think knowledge is power. The more informed we become, the more power we have as women to take care of our hearts. Good information and thank you.
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Hi Suzie – I agree 100%.
In fact, I often tell my readers and the women in my Heart-Smart Women audiences:
“Your only job now is to become the world expert in your particular diagnosis!” Or as one of my readers told her own cardiologist: “This is your career – but it’s MY LIFE!”
Take care – and keep taking care of that precious heart! ❤️
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Q: What strikes you as the most urgent of the four priorities from this Roundtable? From my perspective, it would be #1 Priority: Embedding women’s cardiovascular health in the medical education curriculum: (My absolute favourite recommendation: we have to reach our future doctors – and nurses- now…)
Although by that time, I will be over the rainbow bridge. Perhaps it might benefit great great grandchildren generations, maybe.
As far as “Does anything I write or speak about even matter?” What I finally came to was: “This does matter to women living with heart disease!” But I now suspect that the general public feels much like I did, pre-heart attack:
“Heart disease did NOT matter to me until it HAPPENED to me!”
And I would add, or to a close loved one of mine.
I will encourage you to continue writing and sharing as long as you feel it benefits you in some way, because it definitely benefits others even though you may never know it. Even having a tiny bit of internet voices helps to share knowledge and experiences. This is my personal opinion.
I did see a (new for me MD, family physician on Sept 11, and new for me MD Cardiologist who focuses on women’s congestive heart failure the following day – which I had the week prior previously scheduled an appointment on my own as he was accepting new patients at a location next to my home. The Cardiologist had an EKG diagnostic report with Chronic Arterial Fibrillation, HR 106. The family physician also stated to me that I had A-fib, HR 110 just by listening to my chest looking for congestion from the CHF, (which the previous PA never noticed but did listen to my chest, mentioning at two separate appointments that she could hear my bowels.🙄)
The Cardiologist confirmed that my Graves disease hyperthyroidism is doing well on Methimazole. With that to consider no blood thinners, but prescribed Digoxin to start immediately to start treatment for Chronic A-fib to try to slow my heart rate. He also indicated his diagnosis of Anxiety Disorder that I already knew about and had disclosed to him. But he will need to work with that issue because it too is chronic. He also will see again for an Echocardiogram and another EKG this coming Tuesday.
The scheduler said the first opening for Echo was in 7 months! As I continued to stand there in shock saying that the Cardiologist would not want to wait that long, I heard another person telling the receptionist to cancel appointments for his loved one because she died. Ugh! But that opened the Echo appointment for me on Tuesday. Gish! But I didn’t hesitate to take it.
Carolyn, I have a lot to digest, but I thought you might want to know from our last correspondence. ❤️🍎
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Hello Teri – Although it’s never polite to take pleasure in somebody else’s misfortune, you likely felt a wee burst of relief overhearing that conversation with your receptionist which bumped you up to that other patient’s appointment… and saved you seven months of waiting!
Good luck with your echocardiogram on Tuesday! ❤️
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No, I did not find pleasure or any burst of relief overhearing a patient had died.
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When addressing any problem, it is difficult to choose a single priority. Generally there are two areas that need addressed. The cause of the problem and the effects of the problem.
So as women with heart disease, those of us who know already that we have it, we want the best treatment options and advice to address our disease.
However, we likely ended up with coronary heart disease and late or misdiagnosis due to lack of knowledge – our own and our physicians.
So I’m going to go with Medical School education. Since that is a primary point for screening and treatment.
However, I am intrigued by community effort. . . What if every grocery store and retail store offered a space for free screening of blood pressure? Maybe in the near future a non-invasive test for lipids, or calcium CT could be offered. Or would people not be interested unless they are already diagnosed??
Just thinking about it all hurts my brain and my heart. Bless you for all of your efforts on behalf of women everywhere!
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Hi Jill – I too like what’s been happening in what social scientists call “third places” especially successful in black and Hispanic neighbourhoods (which are places outside of home and work, where people interact and develop social ties e.g., coffee shops, barber shops, hair salons, churches, community centres, libraries, etc). I’ve been doing my free “Heart-Smart Women” presentations at our local community centre’s auditorium 2 blocks from my home since 2009 – many women show up in their exercise gear right out of their morning workouts in the building! I think it’s good to meet people where they already are.
Ever since I was invited to speak (virtually) to a medical school class in New York City, I knew right away that this was the demographic that’s missing the boat. They’d already learned about women’s reproductive health, which IS covered in med school classes, but a study on medical schools found that women’s sex-specific health and especially “women’s cardiovascular disease risks, symptoms, diagnoses, management and outcomes are NOT routinely included in medical school curricula.”
I was overwhelmed by the questions that these NYC students asked non-stop throughout my one-hour+ class, revealing a strong curiousity about something that was clearly news to them! A study on medical schools on how women’s sex-specific health in general is taught in med schools found that “women’s cardiovascular disease risks, symptoms, diagnoses, management, and outcomes, are NOT routinely included in medical school curricula.” So there’s the logical place to double-down on – ideally, bringing in real live women living with heart disease as part of the lectures.
Don’t want to hurt your brain and your heart too much, Jill – you take care of both!!
❤️
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I don’t know about Canada, but the women in America only got the right to vote 104 years ago. The rapid progress in electronics and communication over the past 100 years compared to the slower-than-snail progress of women being seen as equal to men in health care, research, pay, education and status just boggles the mind!
But at least there is progress, even if slow.
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I had to look this one up, Jill – Canadian women got the right to vote in national elections 106 years ago, but that was two years after the women living in the province of Manitoba already had the right to vote in provincial elections!
I recall meeting a woman in the early 70s after I’d moved to Vancouver who worked in a management position and was car-shopping. At the time, banks would lend money to women only with the signature of a male relative co-signer. This woman told the bank officials that her only living male relative was her brother, who was living with their Mum because of a longterm mental disorder.
“He’ll do!” her loan officer replied!
So you’re right there IS progress. . . sometimes! ❤️
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