by Carolyn Thomas ♥ @HeartSisters
Dear Doctor,
Several years ago, when the British Medical Association openly warned U.K. docs and med students NOT to make “personal or derogatory comments” online about their patients (guidelines mercifully updated since then), I became even more alarmed than I had been. Why, I wondered at the time, was it even necessary to issue this warning to intelligent, educated brainiacs who practice medicine? And are there some physicians who should simply not be allowed on social media?
Lately, I’ve been rethinking my former alarm. And the reason for the rethink is this: I’ve noticed that many of you physicians might be in danger of abdicating your traditional role as our medical educators. . .
There is far too much unadulterated trash masquerading as reliable healthcare information out there for informed medical professionals to sit silently on the sidelines anymore while viral misinformation continues to spread.
Case in point: the truly cringe-worthy gospel preached by that wildly popular cardiac surgeon-turned-medical hypester Dr. Oz (like “Five Libido-Boosting Super-Foods That Will Save your Marriage” ). We have the makings of a wholesale hostile public rejection of sound medical knowledge around every corner.
(And by the way, there are NO “libido-boosting super foods that will save your marriage” if people are now willing to count on a food item as its only salvation).
We already see evidence of this kind of public rejection in the disturbingly lowered vaccination rates and higher epidemics of measles (a leading cause of vaccine-preventable childhood mortality) as parents follow the unabated anti-science voice out there. Just think about this stat from the World Health Organization: measles cases reported in the first three months of 2019 were 300% higher than in the first three months of 2018, with outbreaks in every region of the world, even in countries with high overall vaccination coverage where it spread among clusters of unvaccinated people.(1) That’s the “herd immunity” benefit of vaccinations: with 90-95 per cent vaccination rates, the disease is prevented. Without it, it is not.
I now believe that unless more of you who actually know what you’re talking about step forward to help balance the onslaught of rampant bafflegab, health misinformation that goes viral will become the rule, not the regrettable exception.
As a concerned heart patient and blogger, I’ve observed a one-sided tidal wave of online health misinformation that’s being met with an underpowered, willingly un-armed response from those on the other side – the ones who are actually most likely to have a credible voice if only they were willing to use it.
There are at least five good reasons for doctors to become more active in social media, based on the online experience of radiation oncologist Matthew Katz, MD (on Twitter as @subatomicdoc):
- learning from patients
- teaching patients
- continuing medical education
- learning about your profession
- exchanging information with other healthcare providers
There are already a number of health care professionals who are doing this online in a big way. For example, here’s just a tiny sampling of some experts I follow and trust:
- Kentucky electrophysiologist John Mandrola, MD blogs wisely on what works – and what doesn’t – for heart patients diagnosed with atrial fibrillation and other heart rhythm issues. He’s on Twitter as @DrJohnM.
- Vancouver’s James McCormack, PharmD is a professor at the University of British Columbia, who – along with family physician Mike Allan, MD – produces the lively Best Science Medicine online podcast that they call “BS without the BS”. Dr. McC. also teaches annual drug therapy courses (“healthy skepticism when it comes to the use of new and old medications”) for docs, nurses, nurse-practitioners, pharmacists, and med students. He tweets at @medmyths.
- Dr. Yoni Freedhoff teaches us about our relationship with food and the food industry’s relationship with that food. He also teaches at the University of Ottawa. Check out his blog Weighty Matters and his posts on Twitter (@YoniFreedhoff).
- Dr. Jen Gunter is a Canadian OB-GYN and pain specialist practicing in San Francisco who is especially wary of snake oil misinformation aimed at women. She tweets prolifically at @DrJenGunter. She also writes a New York Times health column, hosts the Jensplaining TV show, and is the author of the best-selling book, The Vagina Bible. Her popular blog most recently addressed a woman whose fiancé insisted she have a premarital exam checking her hymen – to be performed by her father-in-law and witnessed by other future male relatives.” (If you already know and love Dr. Gunter’s feisty ways, you can just imagine her response to that goofy scenario.)
NOTE FROM CAROLYN: I must comment here about Dr. Gunter’s latest public scuffle. It was with the once-venerable Scientific American, who ran an opinion piece that The American Council on Science & Health called a “bizarre, anti-medical rant” attacking Dr. Gunter’s personal style, her qualifications, and worse, her credibility. The writer took specific aim at how Dr. Jen sometimes starts her Twitter replies to those pushing health nonsense (Hello, Gwynneth Paltrow!) with “I am a board certified OB/GYN, and…” The writer’s open hostility is not uncommon when an informed woman dares to stand up to speak her mind. We take it in stride if a male expert authoritatively expresses his opinion along with his credentials, but when Dr. Gunter does it, she gets entire op ed pieces thrown at her head. In the end, however, I’m happy to say that she won that scuffle. SA ultimately removed the article.
What all doctors do have at the very least is the ability to start compiling a basic list of credible online health resources you could recommend to your own patients. Get them printed like you would a prescription pad.
Because if doctors don’t do the recommending, their patients will seek out the Gwynneth Paltrows and Jenny McCarthys out there who will.
While I’m primarily addressing physicians here, I would also love to see more Physician Assistants, nurses, nurse-practitioners, paramedics, pharmacists, dietitians and other healthcare professionals share their specific expertise on social media. What are the questions your patients are asking, and how could you share your responses to help more of us?
Ali Jalali, MD (@ARJalali) of the University of Ottawa’s Faculty of Medicine reminds his colleagues of this crucially important fact:
“Your patients, your students and your residents are already on social media, and they may not be safe on it. It’s part of your social accountability to be there to help them.”
And please docs, since we’re talking about enhancing credibility here – please use your own name on social media.
In the spirit of sharing good advice, never forget Dr. Farris Timimi‘s brilliant 12-word rule of health care social media:
“Don’t Lie. Don’t Pry. Don’t Cheat. Can’t Delete. Don’t Steal. Don’t Reveal.”
Dr. Timimi (@FarrisTimimi) is the medical director for the Mayo Clinic Center for Social Media. He likes to refer to social media participation as a “conversation” for which doctors should know the risks and behave accordingly, but not be so risk-averse that they do not participate.
Don’t be like the Emergency physician in Rhode Island who was fired for posting identifiable content about her trauma patient. Don’t be like the two idiots who posted a ‘thumbs up’ pic of a dead patient, a decision that got them kicked out of medical school (that’s so hilarious, kids!) Don’t be like the five California nurses fired for openly discussing their patients on Facebook.
In other words, don’t be stupid.
Start by browsing what’s out there to help discover your own niche. “Address those societal needs that you think are most important” is the first suggestion of the Mayo Clinic Social Media Network’s guiding principles for physicians, along with other solid social media tips. Check out those healthcare colleagues whose work you respect – see what they’re up to online. Learn the tools.
And as Dr. Timimi warns his colleagues:
“The biggest risk in healthcare social media is not participating in the conversation.”
♥
1. “New measles surveillance data for 2019”. WHO. 15 April 2019.
♥
Carolyn Thomas is a heart attack survivor, Mayo Clinic-trained women’s health activist, speaker, Heart Sisters blogger, and author of “A Woman’s Guide to Living With Heart Disease”(Johns Hopkins University Press). You can find her on Twitter or in short Vimeo films like this 2-minute one, or featured in many media interviews. Last year, she quit the time-suck that is Facebook after yet another security mess there.
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Question for Patients: Which health care professionals do you like to follow on social media?
See also:
Mayo Clinic’s online training certification course in Social Media Basics for Health Care (eligible for AMA PRA Category 1 Credits™)
The questions you don’t ask your doctors
Heart Sisters 
Interesting question – which may cast some light on why we are often reluctant to trust doctors, is – “How long did it take to abandon the Gold Standard, Six Weeks of Total Bed-rest” as the recognized treatment for a heart attack?
And how deadly the results!
Unless he’s passed on recently, one of the two Doctors promulgating his ‘alternative, woo-woo heresy is still alive.
Bet you (Doctors and Cardiologists) don’t know his name, or what incredibly useful device he invented that allows you to ply your trade!
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Oooh! Ooooh! (hand waving in the air!)
I know! I know!!
I write about him frequently, here, here, and here for example… My hero!
Looking back at the history of medicine is illuminating (as is the history of essentially every other area of society, too). For example, women are allowed to vote now… 😉
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Excellent article, thanks for the research and sharing sources. When I was being treated for breast cancer nine years ago, I was baffled by all I heard and read about cancer even though I’d been a nurse for a couple hundred years. Fortunately the cancer center here had a physician in integrative medicine who helped me sort and select useful resources. My first go-to is the Mayo Clinic site but I listen to podcasts while doing my cardio so you’ve given me new ideas.
I read your posts every week, really appreciate all of them.
Sara
Madison, Wisconsin
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I don’t think I’ve ever met a nurse with a couple hundred years of experience, Sara! 🙂 There is nothing like actually hearing a diagnosis aimed at YOU to make a person feel utterly overwhelmed and confused!
Thanks so much for your kind words…
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Bravo! I hope this gets very widely read.
The great sources you cite deserve attention. More are needed. As my cardiac surgeon said to me, Dr Oz has gone to the dark side!
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Hello Jenn – I’m afraid that your cardiac surgeon might be right! Have you ever seen this short video of Dr. Oz testifying at a US Senate hearing on his questionable ‘miracle fix’ pseudoscience (e.g. “Consuming green coffee bean extract can make you lose two pounds a week with no dieting or exercise!!!”) It is so embarrassing to watch a once-respected cardiologist squirming at the microphone, blaming his “flowery language” instead of taking responsibility for his bogus claims.
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Reading through the current comments, I feel I have a couple comments to offer based on personal experience.
Like Mirjami I am blessed with a cardiologist that values my intuition regarding my symptoms. However, what I feel has improved my care 1000% is not social media but the judicious use of interactive media.
If I am able to get my questions and concerns answered online by email, a virtual visit with a doctor, or a a bona fide medical advice line, I am more likely to seek help early and often from my own health care professionals… rather than strangers on the Internet.
My health insurance HMO Kaiser Permanante was a pioneer in this type of virtual medicine… Also our local University of Colorado Health Care system has adopted similar methods. I’m interested to know about access by computer in Canada.
If I have a general medical question I will look to Mayo Clinic online for answers and education.
I myself, like you, try to give back to the online health community by replying to questions in forums about Cardiomyopathy and other topics I understand from my ICU nursing background.
I do feel the future holds a collaborative model with complementary and alternative healing methods, though I denounce any and all schemes which make money off of vulnerable individuals and capitalize on their fear and ignorance.
We are Spiritual beings having a physical experience. If we only address the physical side of any disease we are missing 2/3 of the Journey to health… the mind and the Spirit….
But of course, in the case of emergency please stop the bleeding and save the metaphysics for later! After 40 years in Hospital settings, I moved from teaching ICU nursing to Spiritual Counseling and working with the mental and spiritual aspects of health.
I look forward to the day that all health care professionals see us as three-dimensional beings, not just bodies.
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Hello Jill – in answer to your question about Canada’s virtual medicine options: healthcare services differ across the country depending on where you live (remote northern regions of our huge country, for example, require many creative options of long-distance medicine; I once watched an amazing live appointment up on the big screen at a medical conference I attended in Vancouver at which a local physician onstage examined and diagnosed the inner ear of a sick Inuit boy sitting in a far away nursing station, all via the miracle of digital diagnostic technology!) Closer to home, in my province (British Columbia, on the west coast) all patients can call an 811 “HealthLink” phone line that provides free 24/7 access to on-call nurses, with slightly fewer hours for on-call dietitians or pharmacists. (Thank you Canada, commie-pinko land of socialized medicine!) This service can often prevent unnecessary and expensive visits to the Emergency Department. Translation services for “HealthLink” are available in more than 130 languages. These experts can offer symptom advice and basic health information. (Thank you Canada, commie-pinko land of socialized medicine!)
I suspect that modern medical schools are significantly different than the med schools of yore when it comes to training future physicians to see their patients not just as bodies (or as I like to call it, the “obstacle between them and their next break). We live in hope!
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Dear Carolyn,
I follow only your blog.
Today 36 years ago (8.12.1983) at 37 years, I was undergoing bypass operation. As my husband called the hospital, they gave me only 50% chance to survive.
I am happy to have a home doctor who always sends me to the heart hospital even if he doesn’t see any EKG changes. He believes in my feelings. A year ago a new one from my 3 bypasses had collapsed. EKG did NOT show it, but I felt that something had changed. I had more angina pectoris. My husband drove me 120 km to my heart hospital. It was not easy to convince the young doctors who received me, because they did not see anything new in my EKG, either.
The bypass was opened in 3 and a half hours. It was very difficult to manage to the cardiologist, but he knew me from earlier visits. It was very painful, but I didn’t dare to complain- only once I said I was having pain. Pain killers did not help. The cardiologist was sweating and shouting loudly and had to change the catheter several times. But he did not give up. I am sure another one had done it.
Perhaps this is interesting for others. I still after 36 years often have problems to convince doctors, who do not know me. Paramedics use to tell me me, “You are sitting at the table. You cannot have a heart attack.”
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Hello Mirjami and thanks for sharing your incredible perspective. You have been on an eventful 36-year journey since that initial diagnosis. And the drama opening up that collapsed bypass artery – WOW! That’s pretty amazing considering your 50% prognosis of survival.
You raise such important points here: the value of having a physician like yours who knows you, respects you and believes you, along with the very real risk of encountering new physicians who know nothing except what they can see on diagnostic test results. So if your issue doesn’t show up on the test, it must not be happening.
While reading your comment, I imagined you sitting at the table, your cardiac emergency being dismissed because you were able to sit at the table. The only ones worthy of belief, I suppose, are the old white men out on the golf course who suddenly clutch their chests in agony and fall down unconscious…
I’m so glad you have been such a remarkable survivor all these years!
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Interesting article but I have to say I find your conclusions about the “unadulterated trash masquerading as reliable health care information out there for educated medical professionals to sit silently on the sidelines anymore while viral misinformation continues to spread.”
A bit contradictory to your real life experiences. You almost lost your life at the sanctimonious conclusions of doctors about your symptoms. I think, in part because of my own experiences, that that is precisely the cause to the rise in alternative thinking about solutions to medical conditions. Tossing that baby out with the bathwater is as dangerous as the thinking of those that think vaccines should be done away with.
As with all things the most productive and sustainable conclusions usually fall in the middle of the swing of the proverbial pendulum. I think the medical professionals and the physicians of more natural healing would do well to step away from their silo thinking and merge ideas. I think then we would have a healthcare system that would heal,save lives and probably lessen the ever increasing label of the Difficult Patient. Just my humble opinion.
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Thanks for sharing that opinion, Janet. I’m sure there are lots who agree with you!
Although you might reasonably expect that my own heart attack misdiagnosis could have/should have led me to be anti-doctor, it has not. Instead, I’m pro-improvement. I want physicians to help me to help other women in the future. As one reporter at Slate wrote about Dr. Jen Gunter after the Scientific American hit piece: “The full pseudoscience side is showing up armed, and she is one of the few doctors willing to authoritatively fire back.”
Let me tell you a story that happened to me within hours of my discharge home from the hospital after surviving my misdiagnosed heart attack: an acquaintance (friend of a friend of a friend) who worked for one of those pyramid sales companies selling some kind of fruit tonic that she told me would “cure” my heart disease, started emailing me EVERY DAY with yet more “evidence” she wanted me to believe (basically, links to the tonic’s manufacturing head office overseas), hoping that I would order this “cure” from her and thus “save my life” (while enriching her bank account, of course). She told me that my cardiologists knew nothing, and didn’t care about me. She was relentless. She took each NO as a personal challenge that needed to be overcome. At one point, she urgently insisted on coming over to my home to convince me in person! (Ah, NO!) The pseudoscience side knows how to come on strong. Virtually every day, people like her contact me here, urging me to write about and endorse THEIR miracle pill/tonic/device/book/diet/philosophy that will “save” my readers’ lives.
But please note that I’m an equal opportunity cynic: I’m mistrustful of the drug and device industries’ influence on modern medicine, and I’m mistrustful of the misleading “education” claims made by a completely unregulated vitamin supplement industry. And more! If I can somehow add to informed opinions out there, that’s what I hope to do.
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Spot on as usual Carolyn! A list of credible online resources from my docs would have helped me with my questions that took valuable time at appointments.
It’s kinda like giving kids homework, everybody benefits.
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I agree, a list of vetted online resources could be invaluable. One of my greatest smile moments was when my cardiologist had to go study the proper way to initiate a potentially dangerous cardiac drug. I had to be in the hospital on a monitor with 12 lead EKGs after every dose for for 48 hours. My cardiologist brought me a copy of the gold standard article he was using while I was in the hospital. I didn’t have the heart to tell him that I had read it 3 weeks earlier.
We and our doctors must always be ready to learn.
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That must have been a delicious moment, Jill!!! And such a terrific example of what all patients facing upcoming medical treatment (especially with a “potentially dangerous” drug) should be doing: look it up. Learn as much as you can about what’s happening to your body. Seek out credible resources. “Ready to learn” indeed!
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I like that analogy, Paula – it’s like homework for grownups.
Instead of telling patients “Don’t Google It”, far better to acknowledge that patients are already online – and steer them to credible trustworthy sites.
When a friend was seriously ill, on life support in the ICU, the doctor came out to us in the waiting room and gave us a photocopy of a page from the medical site UP TO DATE (they have a patient portal there, too) that gave us clear and comprehensive plain-language explanations of her diagnosis. It was SO helpful at such a scary time….
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