Self-tracking device? Got it. Tried it. Ditched it.

by Carolyn Thomas    @HeartSisters

It took a while to improve upon the humble little pedometer. This wearable device, typically attached on or near one’s waist, has been tracking how many steps and how much distance we travel each day ever since its invention by Abraham-Louis Perrelet back in 1780.

But with the relatively recent explosion of wearable digital activity trackers on the market, I’m now waiting for the randomized control trial that compares those fancy-schmancy new devices head to head with that simple old-fashioned pedometer. In other words:

Q:  Just because you make it digital, does it make it better? 
Continue reading “Self-tracking device? Got it. Tried it. Ditched it.”

Which patients does the “patient voice” represent?

by Carolyn Thomas  ♥  @HeartSisters

There are patients. And then there are patients. 

Let’s consider, for example, two friends of about the same age, same height, same size, same socioeconomic demographic – each one (in an amazingly freakish coincidence) a survivor of a similarly severe heart attack, admitted to the same hospital on the same day. Let’s call these two made-up examples Betty and Boop.

Betty is diagnosed promptly in mid-heart attack, treated appropriately, recovers well, suffers very little if any lasting heart muscle damage, completes a program of supervised cardiac rehabilitation, is surrounded by supportive family and friends, and is happily back at work and hosting Sunday dinners after just a few short weeks of recuperation.

Boop, on the other hand, experiences complications during her hospitalization, recuperation takes far longer than expected, her physician fails to refer her to cardiac rehabilitation, she has little support at home from family, her cardiac symptoms worsen, repeat procedures are required, she suffers longterm debilitating consequences, and is never able to return to work.

Yet despite these profound differences, physicians would still describe both of these women with the same all-inclusive descriptor, “myocardial infarction” (heart attack).  Continue reading “Which patients does the “patient voice” represent?”

Discover. Join. Leave. The life cycle of online patient groups

by Carolyn Thomas  @HeartSisters 1st in a 3-part series

As you know, online support groups exist for those living with just about every possible health condition. Some support communities even target very specific discussion group members like Lesbians with breast cancer or Jewish alcoholics, as well as a range of issues beyond medical conditions (e.g. parents of twins, bereavement, victims of professional misconduct).

When it comes to going online to seek information, answers or support from your peers, it does appear that there’s a lid for every pot.    Continue reading “Discover. Join. Leave. The life cycle of online patient groups”

When the elephant in the room has no smartphone

by Carolyn Thomas  @HeartSisters

Shortly after arriving at Stanford University School of Medicine to attend the conference called Medicine X (“at the intersection of medicine and emerging technologies”), it hit me that I didn’t quite belong there. Maybe, I wondered, the conference organizers (like the profoundly amazing Dr. Larry Chu) might  have goofed by awarding me an ePatient Scholarship – rather than a more tech-savvy, wired and younger patient in my stead.

Please don’t get me wrong – I was and still am duly thrilled and humbled to be chosen as one of 30 participants invited to attend MedX as ePatient scholars, generously funded by Alliance Health based on meeting selection criteria like “a history of patient engagement, community outreach and advocacy”.

But almost immediately, I started feeling like a bit of a fraud.  Continue reading “When the elephant in the room has no smartphone”

How a heart attack turned me into an “information flâneuse”

by Carolyn Thomas      @HeartSisters

Before surviving a heart attack in 2008, I never gave my heart more than a passing thought (except maybe when slogging up that brutal Quadra Street hill with my running group on our way back to the Y).  But after my heart attack and accompanying shock, disbelief, grief and anger, I became just a wee bit obsessed. I threw myself into boning up on women’s symptoms, risk factors, diagnostics, treatments and emerging cardiac research as if I were cramming for some kind of imminent cardiology midterm.

I applied to attend the annual WomenHeart Science & Leadership Symposium for Women With Heart Disease at Mayo Clinic – and then became the first Canadian ever accepted for this patient advocacy training.  I subscribed to daily cardiology bulletins and heart institutes’ news feeds. I launched this blog, Heart Sisters, and have written 500+ articles here so far. I’ve given presentations about women’s heart health to thousands of people. And I applied for media accreditation so I could interview cardiac researchers attending the 64th annual Canadian Cardiovascular Congress in Vancouver last fall, where I was shocked to find that only four of the 700 scientific papers presented at this conference were even remotely focused on women’s heart disease.  I find this subject irresistibly compelling, and am almost insufferably preoccupied with All Things Cardiac.

Just recently, I came across a term that seems to capture the kind of person I’ve become, post-heart attack: an “information flâneur”.   Or, more appropriately, a flâneuse, the female version of this affliction. Continue reading “How a heart attack turned me into an “information flâneuse””

“Seeking Social Solace”: why aren’t heart patients online?

by Carolyn Thomas  @HeartSisters

See that microscopically tiny little purple sliver near the top of the pie chart? That’s heart disease – and the sliver represents how many heart patients are going online to engage with others about our shared diagnosis. As you can see, we make up barely 2% of all diagnoses discussed by patients on social media, the second smallest slice of this very big tasty pie.  You might wonder why that is given that, compared to every other disease included in this study’s findings, heart disease is our biggest killer. Continue reading ““Seeking Social Solace”: why aren’t heart patients online?”