by Carolyn Thomas ♥ @HeartSisters
Many physicians worry about patients like me who go online to look up their medical conditions. They worry that we patients are not capable of understanding what we’re reading. They worry that all that medical terminology is too confusing for us. They worry that patients don’t know how to research complicated medical issues. Patients, after all, haven’t been to med school and may be easily confused or mislead by what we find online.
Then there’s Dr. Joe Ketcherside MD.
He recently responded to my post called What Doctors Really Think of Women Who Are Medical Googlers (republished on LinkedIn’s Digital Health forum) – and with his kind permission, I’d like to share what one physician has to say to his worried colleagues:
“Normal people gather information on all kinds of topics and evaluate its content and reliability all the time.
“We have to decide what car to buy, how to refinish the floor, what type of mortgage to use on a home purchase, where to vacation.
“We often also have a job that has professional responsibilities and must maintain our knowledge of our specialty. We sometimes have actually gone to college and even graduate school where we learn all about doing research.
“So – sorry to the other physicians who disagree – but a great many of your patients are perfectly capable of researching their illness and in short order, knowing more about it than you do.
“There are certainly patients who get snowed by some of the bogus info on the web. Or in books, magazines, and the barber shop.
“But I have met a couple doctors in my career who stopped learning some time in the 19th century, like the one who told Todd Akin that women’s magic wombs can shut down in the case of ‘legitimate’ rape.*
“Patients who are engaged and responsible in their own health will seek information to help understand their disease and how to manage it. Engaged, patient-focused physicians will recommend reliable places for patients to find more information and will welcome their questions.
“Patients should be encouraged to seek information about their health. If their physician does anything other than further encourage this and point them to reliable resources, they have no business practicing.”
via Dr. Joe Ketcherside, Linked In: Digital Health community, August 26, 2012
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* American Tea Party-backed Republican Todd Akin become infamous for his comments during a failed Missouri Senate race about “legitimate rape” – in which he claimed that victims of “legitimate rape” rarely get pregnant, because the female body “has ways to try to shut that whole thing down.” Akin was defending his position that abortion should be illegal, even in cases of rape.
See also:
- A second opinion from Dr. Google
- When you know more than your doctors about your diagnosis
- When you fear being labelled a “difficult” patient
- How a heart attack turned me into an “information flâneuse”
- Why don’t patients listen to doctors’ heart-healthy advice?
- Your health care decisions: don’t worry your pretty little head over them
- Reliable health info from the ‘medically unqualified’?
- What doctors really think about women who are ‘Medical Googlers’
- Health information online: how to tell the trash from the truth
- Why you’ll listen to me – but not to your doctor
.
Heart Sisters 
I’m ABD (“All But Dissertation”) in clinical psychology and a former research assistant in a family medicine research unit–so of course, I research online symptoms/diagnoses, using only reliable sources (usually pubmed.org) and, due to my training, having little difficulty with medical terminology.
Yet I’ve been “pooh-poohed” all too often by my doctors, when in fact, I’ve diagnosed correctly a number of medical conditions earlier or more correctly than my doctors have (and, indeed, my dog’s vets have). I am now battling a chronic viral infection that I have no doubt about in terms of the diagnosis, but because a correct diagnosis would entail that my HMO-based primary care doctor would need to be completely up-to-date on this relatively rare infection in order to correctly diagnose it, I’ve not even gone to the doctor about it (as there is no treatment for it anyhow). I know I’d be pooh-poohed once again and sent back home with a “you’re scaring yourself” brush-off.
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Hi Lisa – I encourage all women (here on my blog and in my heart health presentation audiences) to become the “world expert” in their own bodies. You’re already doing that! The trouble with rare medical conditions is just that: they’re rare, meaning the average doc may go through an entire medical career without witnessing a single case. As one of my readers explained to her doc about what she’d researched on her own about her rare condition: “It’s your career, but it’s my life!”
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This week I saw the go-to doc (in my HMO) for hypertrophic cardiomyopathy. She was surprised when I told her that back in 2006 I had first suggested my (now confirmed) diagnosis of apical hypertrophic cardiomyopathy. That April I had an angiogram (relatively clear) after severe shortness of breath, lightheadedness, fatigue, and an abnormal EKG.
I continued to research what might account for my symptoms and EKG, but as far as the docs were concerned, they had given me the gold standard test and I was fine, mild mitral valve prolapse.
Both cardiologist and PCP rejected my suggestion of AHCM in 2006 (“That would be very rare.”) and again in 2009: my next major push on the cardiac front. They smiled tolerantly when I pointed out that I have already survived diseases that are far more rare.
This week the young cardiologist not only confirmed that my EKGs are entirely typical of AHCM, as well as my echos, but she pointed to evidence of AHCM in the angiogram images from 2006 – right there for anyone who could recognize it.
So yes, patients are entirely capable of understanding their condition better than docs, but docs are still the gate-keepers and in my HMO, it can be very difficult to get around them. It certainly didn’t help that back in 2005 yet another doc had (in error) added Anxiety to my list of conditions.
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You are so right, Kathleen – our doctors are indeed the gatekeepers. Look at the outcry this past week among some physicians in response to the Open Notes report in the Annals of Internal Medicine (which suggested that both patients AND their physicians benefit from open access to patients’ records) Your case also illustrates how clear evidence of AHCM in your angio was misdiagnosed by your docs in 2006, suggesting that the subjective diagnostic bias of our physicians can further keep us well behind the gate.
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Thank you, Dr. K.! I think I’d like to see you as a patient.
I respect doctors who do not treat their patients like they are all uneducated. I’m an inveterate online researcher. My own cardiologist has told me that she asks her staff to notify her a week before my appointment so that she can check on new developments on my type of heart disease – she knows I’ll either ask questions, or she’ll be able to point me toward new treatments so that I can ask intelligent questions and be actively involved in my medical treatment.
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Wow! You have an awesome doc there, Pamela. And you have trained her to be even more awesome (she needs a heads up to warn her you’re on your way so that SHE can get up to speed!?) A true patient/provider partnership example. Brilliant!
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I wish to be more like that. But i’ll try to get more open minded. Hope i’ll succeed. Thanks.
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