A crown, a crowd and a standing ovation

One of the first medical conferences I attended in person after launching my Heart Sisters site was in 2011 at Vancouver’s seaside Convention Centre, where the annual Canadian Cardiovascular Congress was meeting for three days. I was neither a conference speaker nor an audience member. Instead, I’d decided to apply (and was accepted) for official media accreditation.

I knew that having a Press Pass would allow me to book individual interviews with featured speakers each day, so I could then write about their emerging research for my Heart Sisters readers.  I was so excited to have access to hundreds of international researchers  – especially those who focused on women’s heart disease – and all under one roof.

But when I checked into that conference Media Centre to pick up my Pass on my first morning in Vancouver, I was gobsmacked when organizers told me that, out of the 700+ scientific papers being #presented at this national conference, only four focused specifically on women’s heart disease.

FOUR studies!?  Out of hundreds!?

As you might guess, hearing that appalling news became the real story behind that conference for me.

The shock also kick-started my keen interest in learning more about what academic researchers call “male-centric medicine” –  which is still practiced throughout much of our healthcare system (and as we heard doctors and researchers repeat each day at the Women’s Heart Health Summit  in Ottawa. For example:

“Female heart patients are still UNDER-researched, UNDER-diagnosed and UNDER-treated compared to our male counterparts.”

The next Canadian Cardiovascular Congress I attended three years later (again with a Press Pass) showed an ever-so-slightly more positive trend of more female-centric studies. This time, a whopping  TWELVE scientific papers that mentioned women were featured!

TWELVE studies!?  Out of hundreds!?

Meanwhile, Lucien Engelen of Radboud University Nijmegen Medical Center in the Netherlands had coined the term #PatientsIncluded in 2010. He defined this global goal for all medical conferences as specifically inviting patients to be “on the program, on the stage, and in the audience.”

That bold goal was starting to roll out (at an often slow snail’s pace, mind you – but still heading in the right direction).

Since attending that first conference in Vancouver, I’ve attended many medical conferences – sometimes with a Press Pass (personally, my favourite way to attend) and sometimes onstage speaking about the patient experience. But the concept of #PatientsIncluded means far more than just inviting a patient to show up.

When I was invited to speak in person at a Mayo Clinic conference on women’s heart disease (specifically to talk about how my Heart Sisters blog and community presentations were affecting community outreach and public awareness among women), I was over the moon!

I hadn’t been back to Mayo since graduating from my life-altering experience there at the 2008  WomenHeart Science & Leadership training.  But imagine my surprise when I arrived at the historic conference auditorium, opened my program, and saw that, while every other conference speaker was listed by name, topic and a brief bio, under my presentation entry, I saw only the words “patient representative” – even though, like all conference speakers, I’d been booked and confirmed months earlier. And Mayo had already generously funded my travel and hotel costs (so they certainly knew I was coming).

Coincidentally, that same week Toronto patient advocate Kate Robson described her own identical speaking experience at an entirely different medical conference, as she described:

“I was surprised to see that the only speakers who did NOT have their biographies included in the conference program were the patient and family representatives.”

The most outstanding example of medical leaders who value the importance of the patient voice as part of every medical conference was the ground-breaking work of Dr. Larry Chu at Stanford University. I was lucky to be among 30 patients who were awarded fully funded ePatient bursaries to attend the first Medicine X conference at Stanford in 2012 – just two short years after Lucien Engelen had announced his lofty goal for all #PatientsIncluded conferences.

That’s how fast current policy practices can change – if there’s a will to improve.

Last week, one of my Heart Sisters readers (who, like me, had also been watching Jackie Ratz via Zoom) observed that most of the physician speakers we watched onstage at this Summit were female docs and researchers talking to the mostly female physician audience. She asked: “Where are the male doctors? Don’t the male docs who are treating female heart patients need to learn more about women’s heart disease, too?” 

Finally,  as promised, here are the words which brought Jackie’s Ottawa Summit conference audience to their feet:

I wear a crown. . . not because I am bragging

I wear a crown. . .

not because I have royal blood

nor do I wear a crown because I like to dress up

I wear THE crown as a SYMBOL that I am a Heart Warrior Queen!

I am wearing the crown not only for me today. . . I wear it for all the other Canadian Heart Warrior Queens, too

I wear the crown for women who have unexpectedly, like me, heard the diagnosis Chemotherapy-Induced Cardiomyopathy.  LIFESAVING chemo left us a LEGACY…

I wear the crown for women who had the INCREDIBLE JOY of birthing a CHILD, only to be told hours or days or months later: “You have HEART FAILURE. . .”

and I also wear it for those who are BORN with wonky HEARTS and need the care of specialists from DAY ONE. . .

I wear the crown for women who have had the MISDIAGNOSIS of DEPRESSION, ANXIETY or HEARTBURN. . . only to find out, often after damage has been done, that it is their HEART. . .

and I also wear it for those whose hearts may BEAT BEAUTIFULLY,  but their vessels and arteries have a MIND of their OWN. . .

I wear the crown to SUPPORT women who have gone through a personal TRAUMA that caused their heart to BREAK. . .

I wear the crown for women whose arteries – without ANY rationale –  SHRED open and SPILL their BLOOD inside their BODIES

and I also wear it for those whose arteries face BLOCKS that STEM the FLOW into their hearts. . .

I wear the crown to ACKNOWLEDGE the hard path of women who had to say GOODBYE and THANK YOU to their OWN BORN hearts and accept the GIFT of another. . .

I wear the crown for women whose HEARTS GAVE ALL THEY COULD –  and their OWNERS who are no longer here. . .

The crowns we wear may all be different, but we stand united as Heart Warrior Queens. . .

 

As Heart Warrior Queens, we represent having HEART – as WE strive to LOVE BOLDLY

– being a WARRIOR – as WE TRY to LIVE BRAVELY everyday,

and a QUEEN – BECAUSE WE MUST LEAD IN OUR OWN HEART JOURNEYS. . .

♥