I participated in the Canadian Women’s Heart Health Summit for the first time this year. So good! So much positive energy and information, I wanted to share some highlights here.
If you don’t have heart disease, you might appreciate the tips below about prevention and preparation, because it can happen to any of us.
If you do, you’ll find advice further down about cardiac rehabilitation and support groups. But first a few words about the conference.
Women With Lived Experience Up Front
Women with lived experience (WWLE) kicked off almost every session. As a fellow participant described it, there is “Amazing power in people’s stories … bravery beyond measure,” and I couldn’t agree more.
This format reminded us all that we’re not talking about heart conditions in the abstract, but rather real women whose full and rich lives are interrupted by them. If you have a heart problem yourself, connecting with others can help you feel less alone, and find hope in their progress.
Speaker, advocate, and WWLE Jackie Ratz shared a quote in her slides: “You never know how STRONG you are until being STRONG is the only choice you have.” I think it’s fair to say that the audience was in awe of their strength and perseverance.
The Canadian Women’s Heart Health Alliance (CWHHA)
The summit was hosted by Canada’s Heart & Stroke Foundation and the University of Ottawa Heart Institute, parent organization of the Canadian Women’s Heart Health Centre (CWHHC) and it’s Canadian Women’s Heart Health Alliance (CWHHA).
Formally launched in September 2018, CWHHA describes themselves as “a network of experts and advocates to develop and disseminate evidence-informed strategies to transform clinical practice and enhance collaborative action on women’s cardiovascular health in Canada.”
Essentially, their vision is “To improve women’s cardiovascular health across the life span.” Simple, right? Not so much! It will take a mountain of advocacy, education, and research effort.
Refreshingly, the organization has included WWLE as well as healthcare providers and researchers from the start. Patient advocate Karen Jacques described it as a “true alliance of professionals and patients.”
There’s an acknowledgement that the WWLE are very much experts too: As Jacques put it, “We’re experts at living in our bodies. We understand our symptoms, how we fit the norms, how we differ. We live with our heart conditions.” And, as she pointed out, many of the WWLE also bring expertise gained from their backgrounds as teachers, nurses, professors, scientists, and more.
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Why do we need an organization like CWHHA? Because…
Women get the short end of the heart health stick
As you’ve perhaps heard, unfortunately, there are still significant disparities in cardiovascular outcomes between men and women. As a 2018 report from Heart & Stroke Foundation put it, women are “under-researched, under-diagnosed, under-treated, and under-supported during recovery.”
As a result, we often fare worse. Canadian women are more likely than men to die within a year of a heart attack. Women have more adverse reactions to certain heart medications and these reactions are more severe than men experience.
As Professor of Cardiology Dr. Jennifer H. Mieres highlighted in her closing keynote address, in spite of universal healthcare in Canada, there are disparities between ethnic groups as well.
As explained in a comprehensive review written by members of the CWHHA, “Risk factors and rates are higher among South Asian, Afro‐Caribbean, Hispanic, and Chinese North Americans… with poorer outcomes in women, especially those of lower socioeconomic status.” The cardiovascular disease (CVD) mortality rate for indigenous women in Canada is a shocking 53% higher than in non‐indigenous women, due in part to the “social, economic, and political inequalities they experience.”
As Dr. Mieres pointed out, someone who doesn’t have food security probably isn’t worried about their blood pressure!
Why do women fare worse?
Lots of people smarter than me have been working to answer that question, but I can share some of the differences they’ve found.
There are knowledge and awareness gaps among both the public and healthcare providers. A 2017 survey found that only 28% of women in Canada knew that heart disease and stroke were the leading cause of death in women worldwide. A 2003 study found that early heart attack signs were missed in 78% of women.
Women take longer to reach out for care. One study found that 70% of women took longer than an hour to get to a hospital that could treat them, while less than 30% of men took that long. Yikes!
But lack of knowledge and (perhaps unconscious) bias impede women once they ask for help too. “Time to diagnosis and door‐to‐device time are longer in women.” Women don’t receive recommended medications during a heart attack (or related conditions) as often as men. Afterwards, they’re less likely to be on needed medications. Professor of Cardiology Dr. Mamas Mamas explained in his talk that women are are far less likely to receive treatments like stents in a timely manner.
Another problem, as Dr. Paula Harvey, Physician in Chief of Women’s College Hospital in Toronto explained, is that women with heart disease are more likely than men to have other conditions as well, including some that are poorly understood, stigmatizing, and difficult to diagnose, such as depression, pain syndromes, irritable bowel syndrome, and thyroid disorders.
Additionally, women are under-represented in clinical trials, and there is a “stunning lack of research specifically oriented to women,” according to Dr. Mieres. 2/3 of heart disease clinical research focuses on men.
Health Canada has been trying to address that for more than 20 years, but it turns out that recruiting women, especially with diverse backgrounds, is harder, perhaps owing to our multiple roles and family caregiving responsibilities.
How can these disparities be fixed?
Addressing this will take a massive effort, from medical education to research to healthcare system changes.
Plus, as Dr. Mieres cited in her closing keynote, 80% of a population’s wellbeing and health outcomes come from quality of life factors, including social determinants of health. She suggested that expanding the healthcare model to truly integrate the latter is the only way to really tackle the disparities. That’s a lot!
But it’s not my focus here. Most of my readers are women either living with heart disease or actively working to lower their risk.
So what can you do to protect your heart health?
Be Aware of Your Unique Risk Factors
First, understand your heart disease risk factors and address them if possible. You’re probably familiar with traditional risk factors like family history, smoking, blood pressure, diabetes, and cholesterol.
A few things you might not know about how they affect women:
- Women with diabetes are about twice as likely as men with diabetes to have a heart attack or experience heart failure, we learned from Dr. Erin Michos, Director of Women’s CV Health at Johns Hopkins University School of Medicine.
- Women who smoke have a 25 percent higher risk of developing heart disease as compared to men who smoke, and 2-4 times that of non-smokers.
- In every age group, women move less and sit more (she types, as her husband skates outside with the kids).
- And even if your blood pressure is low now, try to keep it that way. A woman’s risk of hypertension rises significantly after menopause, as multiple speakers mentioned, referencing this chart:
Risk Factors Unique to Women
Did you know there are risk factors that uniquely affect women across the lifespan? I didn’t until recently. This infographic, from a paper in the American Journal of Preventive Cardiology, co-authored by speaker Dr. Michos, illustrates it nicely.
A bit of explanation:
- ASCVD means atherosclerotic cardiovascular disease. It’s the conditions we think of as related to blocked arteries: heart attacks, strokes, and more.
- Menarche is a fancy word for a woman’s first period. Turns out getting it early (at or before 10) or late (at or after 15) is associated with higher risk.
- PCOS = polycystic ovary syndrome.
- OCP = oral contraceptive pills, and they’re more of a concern if you’re over 35 and have other risk factors, especially smoking.
- Preterm menopause means before age 40, and leads to a 36% increased risk of CVD after adjustment for conventional risk factors
The pregnancy-related risk factors in particular surprised me. Pre-eclampsia alone confers a:
- 4-fold risk of hypertension later in life
- 2-fold risk of CVD
- 4-fold risk of heart failure!
As Dr. Michos said, “pregnancy is nature’s free stress test”.
As you can see, CVD risk assessment in women should look at more than the traditional risk factors.
Be Proactive About Communicating with Your Healthcare Provider
As we learned in an excellent session called “Communicating with Your Healthcare Provider: How to Maximize Your Time and Optimize Your Health,” most complaints in healthcare are about poor communication.
In one study cited, 75% of the doctors believed they communicated effectively in an interaction, while only 21% of the patients agreed!
You’re An Expert Too!
As WWLE Nadia Lappa and Assistant Nursing Professor Dr. Krystina Lewis framed it, the medical encounter is really a meeting of experts. Patients too have expertise and power, as this slide so nicely illustrates:
As I often tell my patients, “You’re the expert of you,” and we need that expertise at the table. Our nutrition plan will only work if we factor in your values, food preferences, and life circumstances.
They also introduced the idea of shared decision making between patient and provider, suggesting you start with three simple questions, from this 2011 study :
- What are my options? (One option will always be wait and watch)
- What are the possible benefits and harms of those options?
- How likely are each of those benefits and harms to happen to me?
Next, Dr. Lewis shared a collection of patient decision aids. If you’re faced with a tough healthcare decision, take a peek. Examples include:
- “Depression: Options to Improve Mood in Older Adults”
- “Prediabetes: Which Treatment Should I Use to Prevent Type 2 Diabetes?”
- “Atrial fibrillation: Treatment Options to Lower Stroke Risk”
These tools can provide information about your options and outcomes, and help you clarify your personal values. They’re meant to complement, not replace, discussions with a health professional.
Preparing for a Successful Medical Appointment
Finally, they shared key steps to having a successful appointment with your healthcare provider, such as:
- Prepare in advance. Make a prioritized list of topics and questions.
- Bring a list of your medicines.
- Be honest. You shouldn’t be judged for your health habits and choices, and that information can be critical.
- Take notes. Memories are fallible.
- Bring a friend or family member.
- Ask questions if you don’t understand something. Medical terminology can be tricky.
- Recap. Make sure you understood key information and instructions correctly.
Effective preparation seems especially important if you’re meeting with a specialist you’ve had to wait months to see. (More details here from a CWHHC resource.)
Many of the themes of this session were echoed throughout the conference. Closing keynote speaker Dr. Mieres also promoted the “patient as partner approach” and quipped, “You need to have a seat at the table or you become part of the menu.”
Attend Cardiac Rehabilitation If You Can
If you’ve had a heart problem, did you attend cardiac rehab (CR)? I hope so! Unfortunately, less than 30% of eligible people enroll, despite these programs reducing morbidity and mortality by 50% and improving quality of life, according to Dr. Tracey Colella, Research Scientist and Clinician who spoke about barriers that keep women from CR.
She told us that compared to men, women are 40% less likely to be referred and 36% less likely to enroll! She said that automatic referral programs have resulted in nine times greater referral for women! I cannot fathom why they’re not the standard. Meanwhile, if you’re not referred, ask!
Women’s family caregiving demands and greater urgency to return work may be another barrier, so programs are advised to offer flexible schedules and alternative models. The pandemic has forced this change, and I don’t think we’ll be going back. Most programs are operating somewhat virtually now, so if you couldn’t attend before, reach out and see if you’re still eligible.
Dr. Colella also said that the literature suggests that mental health conditions like depression and anxiety contribute to higher dropout rates for women. And women are nearly twice as likely to experience depression after a cardiac diagnosis. So if the program in your area offers psychosocial resources and counselling, take advantage! It may actually help you complete the program, in addition to the mental health benefits.
Dr. Colella also talked about the importance of peer support in CR, which she said can help normalize symptoms, improve self-efficacy, confidence, and hope. With most programs operating virtually right now, peer support may not be happening, but there are other options…
I’ll finish with several groups I learned about at CWHHS that might be of interest to you. As Women@Heart ambassador Marion Martell explained, women often feel isolated and experience depression after a heart event, so peer support can help improve outcomes.
- Women@Heart Community Support Program – A “peer support program led by women with heart disease, for women with heart disease” (of any kind). It consists of 12 structured two-hour sessions held bi-weekly online now, thanks to the pandemic. Based on Ottawa, but it now appears to be open to women everywhere.
- HeartLife Foundation – A “patient-driven charity whose mission is to transform the quality of life for people living with heart failure by engaging, educating, and empowering a global community to create lasting solutions and build healthier lives.” They host a private Facebook group for patients and caregivers. I love how the emphasis is on “life” rather than “failure.”
- Canadian Women with Medical Heart Issues Facebook Group – started by Jackie Ratz, an advocate and WWLE, who started her story with an inspiring declaration that “I am not what has happened to me. I am what I choose to become.” The group is a “casual, private Canadian women’s lifestyle group dedicated to the support & information sharing about living with heart health issues” and also “proudly affiliated with HeartLife Foundation of Canada.”
- Community of Survivors Facebook Group – Also mentioned by Jackie Ratz, this is a “safe, inclusive and respectful community” established and moderated by the Heart & Stroke Foundation of Canada where people share “experiences, quality information and tips for life after a stroke or cardiac event.”
And if you’re here in Alberta, there’s the Heart to Heart Cardiac Support Society, which now has a Facebook group and is going to start meeting monthly again (over Zoom), as well as their fantastic partner organization, Woman to Woman, which meets monthly at Repsol Place, at least when there’s not a pandemic.
These support groups enable you to connect with people who’ve been through what you’re experiencing, especially those that are ahead of you on the journey and getting back to living their lives, different as they may be.
I’ll leave the final words to a fellow participant who asked to remain anonymous: “Knowledge is power. Be informed. There are many resources out there, but if you need ‘it’ and ‘it’s’ not available, advocate for it, and always advocate for yourself as you know your body best.”
Did you attend the summit? Chime in on Facebook with your key learnings!