Why your own story is not scientific data

RecognizedExpertsby Carolyn Thomas    @HeartSisters 

One of my all-time favourite reviews of my book (A Woman’s Guide to Living With Heart Disease, published by Johns Hopkins University Press) comes from Robert in Australia, who wrote:

“A bit too much emphasis on how women are neglected when it comes to heart disease. Happily, for me and my fellow patients, my doctors, nurses and physios did everything by the book.”

Dear Robert:   Thank you for helping to prove my frickety-fracking point.        .      .    

Robert’s opinion, as a male heart patient, was no doubt shaped, happily, by his own experiences as a male heart patient. So he’ll likely accept or dismiss what he hears afterwards based on how it fits with his own lived experience. If it didn’t happen to him, it can’t be that important. We know from study after study, however, that women’s cardiac events are more likely to be misdiagnosed compared to our male counterparts, and – worse! – under-treated even when appropriately diagnosed. That is not simply my opinion. It’s the current reality in medicine.

What this does NOT mean is that ALL studies show that ALL women are always misdiagnosed in mid-heart attack. What it does mean is that, in the world of cardiac misdiagnoses, the research data clearly suggest that the heart patients who are significantly more likely to be misdiagnosed are women.

As I wrote here in There is No Gender Bias in Medicine. Because I Said So”:   when asked about implicit gender bias in medicine, physicians tended to react in one of four ways:

  1. Yes, of course gender bias exists in medicine, as it does throughout our society.
  2. Yes, gender bias might exist, but I’ve never witnessed it among any of my colleagues.
  3. Yes, other doctors do exhibit gender bias – but not me, of course.
  4. What gender bias?

It’s human nature to readily accept what we agree with, yet push back with our own “evidence” against what we don’t.  For example, I like studies that tell us coffee, chocolate and wine are heart-healthy.  I might even call these “good” studies, obviously run by brilliant researchers. But I don’t like studies concluding we should give up these luscious things. Those are the “bad” studies.

Except that’s not how the scientific method works. It’s not a popularity contest. We can’t judge a study based only on whether we like its conclusions, or because that’s not how it happened to Robert in Australia.

And even working scientists disagree with each other all the time. As the late physicist-turned-philosopher Thomas Kuhn suggested, there are many explanations for scientific disagreements.  Those of us who are non-scientists may think of scientific theories as either proven or unproven – but in reality, science is far more complicated, as outlined in Scientific American:

“One theory may be better in some ways, or it might be easier to work with. A competing theory might be better in another way, or perhaps it can predict more accurately. Different scientists might care about one aspect more than another. As a result, they might come to disagree about which theory is better.”

When I listen to “experts” flogging their latest miracle diet books, I sometimes use my late grandmother as my own “n=1” argument (the number of research participants being studied = 1).  My Baba lived well into her 90s, outlived three husbands, and spent her busy life cooking, baking and consuming food focused heavily on the butter/bacon/sour cream trinity of delicious starchy Ukrainian cuisine – and she never once wondered if she should cut back on her carbs.

If I were using only my grandmother’s story as my anecdotal “evidence” against miracle diets, I might choose to believe that the more buttery perogies I eat every day, the longer I will live, too. But does my grandmother’s story outweigh science?  Sadly, no.

Yet many people seem to believe that personal stories should qualify to do this. Stories are indeed important as instructive narratives, but they’re not science-based. I love patient narratives, as regular readers already know, most especially when they are making other patients feel less alone, less frightened or more informed – but not if they’re meant to point out that Robert in Australia has a superior story. 

Anti-vaxxers, conspiracy theorists, those who follow Dr. Oz and his often cringe-worthy advice (“Five Libido-Boosting Super Foods That Will Save Your Marriage!!”) – these people can turn one story they found on Facebook into a viral firestorm of sensationalized misinformation – e.g. ingesting disinfectant will kill the coronavirus (a goofy “cure”  offered up by one former U.S. president). The latest doozy I heard about (thank you Fox News!) was this: people who get the COVID-19 vaccine somehow become “magnetized”, causing metal spoons to stick to their foreheads.  I’ve been vaccinated, so I tried my own experiment in the kitchen, as recommended by somebody called Dr. Sherri Tenpenny and her disciples. The spoons would not stick to my face. So neither science nor my own lived experience make me suspect that this absurd“fact” is even remotely true.  IT IS NOT , as McGill University’s Dr. Joe Schwarcz calmly explains for us. There is no story to that story.

Recently, I’ve been following social media responses to another article I wrote called When You Live With a Serious Illness – and a Bad Marriage – responses which also illustrate this phenomenon. The article included study results from University of Washington researchers who found that men are six times more likely to leave a marriage because of their spouse’s serious illness than women are, thus supporting the old psychosocial mantra: “Women stay. Men leave.”

But some readers interpreted this study’s findings as if it were a personal attack on their family story – one because her own Dad had been her mother’s devoted caregiver for 10 years. Plus a number of his male friends had cared for their wives, too – so two pieces of “evidence” proving the U of W study must be wrong, and it was a “bad” study.

But the study wasn’t “wrong”. It did not report that ALL husbands leave their ill wives – just that in the world of partner abandonment due to a sick spouse, data suggest that six times MORE of those who do leave their spouses are men, compared to the number of women who leave. 

When you come across a new study you’re thinking of sharing, it’s important to be an educated consumer before you click that ‘send’ key.  A good place to start is the medical news watchdog called Health News Review.  Their patient-friendly list of tips for assessing the quality of scientific studies, medical evidence and health care claims is my go-to resource for credible health research. One of their best tips, for example, is to beware of the growing trend toward academic science-by-press-release – often distributed as “news” to the media before research is even accepted for publication in any medical journal. Please check out Health News Review for more, and bookmark that site.

Meanwhile, take every study you encounter with a skeptical grain of salt, but try not to dismiss research findings offhand just because you know somebody who knows somebody who knows Robert in Australia. Keep your mind open as you learn what to look for in a well-run research project, like this range in evidence quality from highest to lowest (originally published on The Ethical Nag: Marketing Ethics for the Easily Swayed): 

Levels of evidence in studies

  • Systematic Reviews and Meta-Analysis:  Comprehensive and structured review of all studies on a specific topic, sometimes combines the data or statistics from the studies (meta-analysis)
  • Randomized Controlled Studies Randomly assign study participants into two groups: those who get the treatment (case) and those who do not (control) to look for differences between the two groups. The chance of being in either group is 50/50. It does not depend on things like how much a person needs treatment. A stronger form of this type of study is the Randomized Controlled Double-Blind Study. This form has the extra step of making sure that neither the researchers nor the study participants know who is getting the treatment or the placebo until the end of the study.
  • Cohort or Panel Studies:  Observe a clearly defined group of people either forward in time (prospective) or looking back in time (retrospective) at previous medical records and other information; in Observational Studies, individuals are observed or certain outcomes are measured, but no attempt is made to affect the outcome (for example, no treatment is given). Observational studies can’t prove cause and effect. They can show a strong statistical association, but cannot prove benefit or risk reduction.
  • Case-Control Studies:  Compare two groups of people: people with a disease or condition (cases) to other people who have the same characteristics (such as age and sex) who do not have that condition (controls)
  • Case Series:  Describe a number of cases
  • Case Reports:  Report on a single case
  • Animal research
  • In Vitro (test tube) research
  • Ideas, editorials, and opinions
  • What my neighbours tell me they learned while watching the Dr. Oz show

.

     Q:  How do you make sense of emerging studies?

.

NOTE FROM CAROLYN:   Was Robert from Australia right about my book? I wrote more about research on women and heart disease in A Woman’s Guide to Living with Heart Disease. You can ask for it at your local library or favourite 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 code HTWN to save 20% off the list price).

See also:

A tale of two studies – 268 years apart   (a follow-up to this article)

Cardiac research and the mystery of the missing facts

Is it enough to have “enough” women in cardiac studies?

Our Cardiac Meds – in Real Life, Not Just in Studies

Are women being left behind in cardiac research?

The ‘bikini approach’ to women’s health research

Cardiac research: where did all the women go?

 

14 thoughts on “Why your own story is not scientific data

    1. That’s the kind of narrative effect that makes “other patients feel less alone” as I’d mentioned, or the sense that “I’m not the only one who feels this way!” Thanks Pauline for your kind words.

      Take care, stay safe. . . ♥

      Like

  1. I loved your book. I have a BSc and found it well researched, applicable to my situation ( quadruple bypass) and insightful.

    Recently my sister was diagnosed with elevated cholesterol 6 months after my bypass (LDL, chol etc) and her GP prescribed a visit to a nutritionist. Now the fact at age 60 I had a quadruple bypass for severe coronary artery disease, this puts my sister at higher risk for CAD, plus our dad had blocked carotid arteries ( transient ischemic attacks) and mom had angina.

    If my sister was male, I am willing to bet her Dr would start him ( her) on a statin vs suggesting “diet changes”. Add to this the number of “silent “ heart disease patients out there, us women must advocate for ourselves and have “heart issues “ ruled out.

    Your book very effectively validated this scientifically!

    Liked by 1 person

    1. Hi Lori – thanks for your kind words about my book. Glad you found it useful. I hope you have recovered successfully from your bypass experience!

      I suspect you are 100% correct – had your sister been a male, (s)he’d be on statins before leaving the doctor’s office. This is an unusual doctor: in my experience, most docs tend to prescribe statins to anybody with a detectable pulse – cardiac risk or not. Some doctors joke about wanting to put statins in the drinking water. . . At least, I think they were joking!

      You’re also correct about your sister’s current risk of heart disease because of her family history (definitely YOU because you were under age 65, not sure how old your parents were when diagnosed – generally, family history is not considered a serious cardiac risk factor except if your ‘first degree relatives’ – parents or sibs – were diagnosed young: Dad or brother under age 55; Mum/sister under 65).

      I’m not a physician, but my understanding is that there are in fact a number of foods shown to lower LDL cholesterol (e.g. oats, nuts, fatty fish like salmon 3x/week, fruits & veg – especially pectin-rich fruits like apples, strawberries, citrus). Your sister’s nutritionist will be able to tell her lots more.

      Time will tell – if her blood cholesterol levels start going down, she’ll know she’s on the right track with her healthy new eating plan. If they don’t go down, drugs will certainly drop those numbers for her, but I have to say I’m always pleasantly surprised when doctors don’t immediately reach for the prescription pad first especially in people – both women and men – who aren’t already heart patients – in favour of things like daily exercise and heart-healthy foods. And I also know from my readers that many women can experience debilitating side effects with statins, a drug she’d likely be taking every day for the rest of her life.

      Your sister must lower her cardiac risk – exercise and diet are two of my favourite non-drug, non-invasive recommendations to start because – unlike drugs – they’ll also make her feel better, sleep better, think better. Your role right now is to be her cheerleader – no matter what path she decides on. Good luck to both of you!

      Take care, stay safe. . . ♥

      Like

      1. Thanks for your comments Carolyn.

        Reading an excellent book called “The New Science of Fighting SILENT Heart Disease “ by Harold Karpman. He writes silent heart disease affects up to 45% of heart disease sufferers and that sudden cardiac arrest kills 90% of its victims.

        If it’s the leading cause of death for those who suffer from heart disease and often the final result of silent heart disease damage accumulating over years like mine did. How many of us had this yearly, accumulating damage without taking our risk factors seriously because we had no symptoms.

        If my sister had no family history of CAD, a diet approach to reduce cholesterol makes sense but that is not her circumstances. In hindsight, if there is one thing I would do differently it would be to start taking a statin 5 yrs ago when my CRP levels, LDL, HDL and cholesterol levels were outside of the normal range.

        Even with family history I did not take this risk seriously. My sister already eats well and exercises a lot so I can only hope her 6 months pass quickly without incident so her lipid levels can be retested. I am doing a phone interview with Heart & Stroke this week to share my story.

        Liked by 1 person

        1. Hi again Lori – I’m not familiar with Dr. Karpman’s book but will look into it. It is true that heart disease is decades in the making – as you say, over years. Yet we also know there are those with high LDL cholesterol who never have a cardiac event, and others (like me) who have always had completely normal cholesterol yet still had a ‘widowmaker’ heart attack. There are many cardiac risk factors (some unique to women – like pregnancy complications). I’m also wondering, if your sister really wants to get a statin prescription, why she’d have to wait six months?

          It might help her to check out the Statin Decision Aids for patients and their physicians to use when deciding – from Mayo Clinic for example – or this one from the U.K.

          Great news about your H&SF interview!

          Like

  2. A comment that’s not an answer to your question LOL.
    In the future I think there will be a marriage of scientific studies with personal stories through improved genetic research….Why did Aunt Charlotte eat butter and smoke and live until she was 93? It’s probably in her genes somewhere.\

    Imagine if with a DNA test at a very young age we could know our highest genetic risk factors and fashion our lifestyle to minimize those risks. The future of Preventative Science and Medicine is a wide open field.

    Liked by 1 person

    1. Those would be interesting studies, Jill. My Dad, a lifelong non-smoker (not just a non-smoker but rabidly anti-smoking!) died at age 62 of lung cancer (one of the 10-20% of all lung cancers diagnosed in never-smokers). We always figured his fate must have been influenced by environmental risks (second-hand smoke – all of his friends and work colleagues were chain smokers in the 1940s and 50s?) Or toxic chemicals? Or who knows what? It always bugged me to see frail elderly men smoking and coughing in public – why were they out and about and living their normal life while my super-healthy and fit Dad was dead?! Life’s not fair.

      I’m pretty sure some medical futurist (apparently, that’s an actual job description these days) is already working on some version of that early predictive test you mention!

      Until then, take care, stay safe. . . ♥

      Like

  3. I’m going to go with eating buttery perogies! And, I’m not able to store my spoons on my forehead–does that mean that my vaccine isn’t working? 🙂

    Liked by 1 person

    1. Hmmmm….. I’m afraid that your vaccine might not be working properly, Charlotte, since according to anti-vax “experts” like Sherri Tenpenny, Bill Gates has somehow managed to insert some kind of mysterious microchip into every vaccine dose that causes the human body to be suddenly magnetized – which could mean that mine’s not working either. . . We could try the tin foil hat next?

      Take care, stay safe. . . ♥

      Like

    2. Depending on the jab you received, (which I chose not to inject poisons in my body) the spoon or whatever was supposed to cling to the injection site, not the forehead.

      Like

      1. Hello June – I was quoting directly from the ‘expert’ Tenpenny who claims to have witnessed the metal spoons magically stuck to the foreheads of vaccinated people. As Dr. Joe Schwarcz at McGill University’s Office for Science & Society explains: “These vaccines contain no paramagnetic material, and even if they did, there would not be enough in the tiny amount of material injected to create a detectable magnetic field. We already have a significant amount of iron in our body, roughly 3.5 grams, and we don’t feel any attraction when we encounter even an extremely powerful magnet…”

        Take care, stay safe. . . ♥

        Like

        1. When all is revealed, hopefully, before this year ends, most of these so called university doctors and most of the medical community are part of the Deep State. There is most likely a deep underground tunnel under his university. The evil runs so deep around us and under our feet, it would take pages to go into. From the vatican to Israel and all around the world. So I’ll just leave it alone until the Truth comes out to the masses. God bless you.

          Like

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