Our physicians are highly trained experts in providing medical care, but it’s their patients who have “skin in the game”. This odd phrase is believed to have originated in the financial sector to describe senior investment advisors who demonstrate their confidence in a company by putting their own money (their own “skin”) into the company in order to build investor confidence. So if stock prices fall, they stand to lose – just like their clients will. Advisors who choose not to do this may be every bit as smart, but they have no skin in the game.
Dave Kansas, the money-and-investment editor at The Wall Street Journal, once offered up this expanded definition of skin in the game:
“It is primarily used to convey financial risk in any kind of venture, but you could stretch it to mean emotional investment. Can you have skin in the game of your marriage? Well, you ought to.”
Emotional (and physical) investment is what patients experience once we are diagnosed with a chronic progressive illness like heart disease. Suddenly, a diagnosis we may have never even thought about becomes a pervasive focus in life. We now have the day-to-day lived experience of illness in a unique and personal way that even the medical experts who care for us likely don’t have. We know what it’s like to feel terrified of every new twinge that might mean another crisis. Is this something? Is it nothing? Should we call 911?
We now have skin in the game.
And that also helps to explain why those of us whose heart disease was originally misdiagnosed are so focused on how that could have happened, on why it happened, and on what needs to change to prevent others from being misdiagnosed in the future.
I have had an intensely personal interest in the topic of cardiac misdiagnosis ever since the spring day in 2008 when my textbook heart attack symptoms (central chest pain, nausea, sweating and pain down my left arm) were misdiagnosed as acid reflux.
Yet the Emergency physician who confidently pronounced “YOU are in the right demographic for acid reflux!” was so convincing (not to mention those impressive letters M.D. after his name) that I apologized profusely before he sent me home, terribly embarrassed about having wasted his very valuable time. And when my symptoms returned (of course they did!), there was no way I was going to embarrass myself further by going back to that Emergency department. My denial was so intense that it took two weeks for that ultimate return. By then my symptoms had become unbearable, and even I knew that being unable to walk more than five steps was not a sign of indigestion. . .
But this time, a different Emergency physician on duty called in a cardiologist (which hadn’t been done two weeks earlier) and I heard the unforgettable words: “You have significant heart disease” for the first time.
I didn’t know this at the time, of course, but female heart patients are at greater risk of being under-diagnosed, and are also more likely to be under-treated even when appropriately diagnosed.
For example, here’s how Dr. Chris Gale, Professor of Cardiovascular Medicine at the University of Leeds, described the results of his study of nearly 600,000 heart attack patients followed over the course of nine years:(1)
“This research clearly shows that women are at a higher risk of being misdiagnosed following a heart attack than men.”
He explained that there are two main types of heart attack: STEMI and NSTEMI. STEMI occurs when there’s a total blockage of the main artery that pumps oxygenated blood around the body. NSTEMI, which is more common, is a partial blockage of one or more arteries. Both result in serious damage to the heart muscle.
This research found that women who had a final diagnosis of STEMI had a 59 per cent greater chance of a misdiagnosis compared with men. Women who had a final diagnosis of NSTEMI had a 41 per cent greater chance of a misdiagnosis compared with men.
Being appropriately diagnosed is critically important because without a correct diagnosis, there is no correct treatment. And Dr. Gale added that women who were misdiagnosed had about a 70 per cent increased risk of death after 30 days compared with those who had received a consistent and correct diagnosis.
Study after emerging study continue to reach similar disturbing conclusions. The 12 women who wrote Focused Cardiovascular Care for Women(2) published in the journal Mayo Clinic Proceedings, warned their physician colleagues that recognizing women are in fact at significant risk of heart disease can avoid reflexively blaming women’s symptoms on non-cardiac causes, adding:
“The public health cost of misdiagnosed or undiagnosed cardiac disease in women is significant.”
How can this still be happening?
And more importantly, why do those who are most able to address this problem often seem to be the most reluctant to champion change? Emerging research confirming a cardiology gender gap is inevitably initially greeted on social media with disdain, or complaints that the study’s methodology was weak, or that (my personal favourite) “further study is required”.
1. When the Institute of Medicine (now called the National Academy of Medicine) issued its landmark 2015 report, Improving Diagnosis in Healthcare, its grim conclusion was: “Urgent change is warranted to address this challenge.” But mandatory reporting of diagnostic errors was not among the eight key report recommendations. Why not? The excuse I heard, voiced by the committee chair at least twice in response to media questions during the launch event, was this:
“Now is not the right time for mandatory reporting of diagnostic errors.”
Not the right time?
NOT THE RIGHT TIME?!
If now is “not the right time”, when might that right time be?
Or, as the award-winning ProPublica journalist Marshall Allen warned his audience at Stanford University’s Medicine X conference that same week:
“Until you start measuring something, you can’t improve it.”
A follow-up to this topic: When I was recently invited to submit an opinion piece to the cardiology journal Circulation (my essay instructions: “should be provocative and stimulate discussion”), I decided to write about the need for mandatory reporting of diagnostic error.
I received two physician reviews of my essay. The first was very positive:
But the second physician/reviewer hated my essay, calling it “too provocative” and accusing me of leaving out all the “good things” that have been happening to address the problem of diagnostic error (without specifically hinting at what any of those “good things” might even be). In spite of the positive response of the first reviewer, Circulation editors rejected my essay, adding that, even if I edited my piece to incorporate all reviewer recommendations, they would not consider publishing it.
2. Another example of the systemic dread of the word “misdiagnosis” (smaller in scope but far more personal to me): When I was in negotiations with Johns Hopkins University Press to publish my book (A Woman’s Guide to Living with Heart Disease, 2017), one of the requirements before signing the book contract was that a cardiologist had to review my draft table of contents and the sample chapter I was asked to submit. The (anonymous) cardiologist who completed this review for me strongly endorsed the project (“This book will be an important addition to the literature…”) – except for one chapter. The 4-5 bullet points in the draft table of contents under Chapter 3 (which was all about diagnosis and misdiagnosis of women’s heart disease) were simply assessed like this:
“Sounds like doctor-bashing to me.”
Chapter 3 became a deal breaker for me. As I told the JHUP Executive Editor at the time, it would be a profound disservice to the women reading a book about women’s heart disease if I failed to include the growing weight of evidence suggesting that women are more likely to have their cardiac event misdiagnosed compared to our male counterparts. “I’m not making this stuff up!” was my final stand. (Happily, Chapter 3 remains as it was submitted).
But it seems that even the use of the word “misdiagnosis” can elicit a knee jerk defense. How on earth can we improve it if some in the medical profession feel uncomfortable even acknowledging that it exists, or that it’s a significant problem for women that must be taken seriously?
3. Just this past week, an Emergency physician in New Jersey tore several strips off me on Twitter because he objected to what he called my “particular style of sensationalism” – as well as accusing me of myopic, misleading, unhelpful, inaccurate, unfair, uninformed fear mongering. He was reacting to a 2014 blog post in which I quoted Harvard researcher Dr. Catherine Kreatsoulas, who studies why female heart patients are misdiagnosed. The post is called “Words Matter When We Describe Our Heart Attack Symptoms“. He seemed to particularly hate the statement that Dr. K. had made about Emergency docs writing “No CP” on women’s charts when patients don’t actually say the words “chest pain”. For some reason, this quote sparked a meltdown that was so snarky, so unprofessional, it made me wonder if he realized that Twitter is public…
How can female heart patients talk about misdiagnosis if that word alone cannot dare to be mentioned without us worrying about offending doctors who simply don’t want to hear it?
They may not want to hear, but I need to continue writing and talking about it, and also supporting those physicians, researchers and heart patients who are devoted to raising awareness of such an important issue in women’s heart health.
I need to, because I have skin in this game.
1. Wu, J., Gale, C. P., Hall, M., Dondo, T. B., Metcalfe, E., Oliver, G.,West, R. M. (2018). “Impact of initial hospital diagnosis on mortality for acute myocardial infarction: A national cohort study.” European Heart Journal: Acute Cardiovascular Care, 7(2), 139–148.
2. Mariana Garcia, Virginia M. Miller, Martha Gulati, Sharonne N. Hayes, JoAnn E. Manson, Nanette K. Wenger, C. Noel Bairey Merz, Rekha Mankad, Amy W. Pollak, Jennifer Mieres, Juliana Kling, Sharon L. Mulvagh. “Focused Cardiovascular Care for Women.” Mayo Clinic Proceedings, February 2016. Volume 91, Issue 2, 226 – 240.
NOTE FROM CAROLYN: I wrote much more about misdiagnosis in women’s heart disease in Chapter 3 of 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 the JHUP code HTWN to save 20% off the list price).
Q: How have you developed “skin in the game” for your own diagnosis?
- Why doctors must stop saying: “We are all patients” (my guest post in the British Medical Journal (BMJ)
- This is NOT what a woman’s heart attack looks like
- “It’s not your heart. It’s just _____” (insert misdiagnosis)
- Misdiagnosis: is it what doctors think, or HOW they think?
- Seven ways to misdiagnose a heart attack
- Misdiagnosis: the perils of “unwarranted certainty”
- Cardiac gender bias: we need less TALK and more WALK
- Unconscious bias: why women don’t get the same care men do
- When you fear being labelled a “difficult” patient
- The sad reality of women’s heart disease hits home
- How can we get heart patients past the E.R. gatekeepers?