What doctors really think about women who are ‘Medical Googlers’

~ Carolyn Thomas

by Carolyn Thomas    ♥   @HeartSisters

Me: “My name is Carolyn, and I’m a Medical Googler.”

You, all together now: “Hello, Carolyn!”

This will come as no surprise to any of you regular readers, but I’m just a wee bit obsessed about All Things Cardiac. From the very minute I was sent home from hospital after surviving a heart attack, I started mainlining Google like it was a drug. I became hooked. I threw myself into researching women’s heart disease in a determined attempt to figure out what the heck had just hit me. And after I had the opportunity to spend five days at Mayo Clinic in October, I became truly insufferable.

Google is how I happened to learn about the annual WomenHeart Science & Leadership Symposium for Women with Heart Disease at Mayo Clinic last fall:   I found it on Google.

Google is how I found about 7,000 other heart sisters – all survivors like me – on the WomenHeart National Coalition for Women With Heart Disease.online support community. I found them on Google.

That’s how I began subscribing to regular cardiology news bulletins from medical journals, clinical research sites, and academic heart institutes.  I found them all on Google.

And that is also how I came to inform my cardiologist recently during my regular follow-up visit that doctors should stop prescribing the drugs Plavix and Wellbutrin together anymore, because – yes! – I’d found the FDA Drug Alert on Google.

But he told me that he had not yet heard about this alert – one full week after the warning had been issued. Since depression is a surprisingly common companion of heart disease in women (Mayo Clinic cardiologists told us that up to 65% of survivors experience depression, yet fewer than 10% are appropriately diagnosed), many survivors have been prescribed both the anti-platelet drug Plavix and the antidepressant Wellbutrin.

If you’re one of them, it likely means your doctor hasn’t visited Dr. Google recently to learn of the contraindication.

I am, apparently, a doctor’s worse nightmare now.

Dr. Stuart Foxman of the College of Physicians and Surgeons of Ontario implied as much in his blog for physicians called DocTalk. He wrote about the growing phenomenon of patients who are now self-educated Medical Googlers.  One study found that many physicians rate the know-it-all Googler as somewhere between “frustrating” and “irritating”.

The study noted a number of doctors’ concerns.  Some patients used the information gleaned on their own for self-diagnosis or self-treatment. Some doctors believed that the information caused the patient unnecessary confusion and distress. “All of these seem like legitimate concerns on the part of physicians,” explains Dr. Foxman.

But he notes that the doctors surveyed in this study expressed other concerns, too.

“The highly curious and informed patients were sometimes perceived as ‘challenging’ with a tendency to test the knowledge of physicians.

“Some doctors felt that these patients were ‘overly assertive, undermined their authority, and did not show sufficient trust’ in their health care provider.”

Dr. Scott Haig‘s TIME magazine essay called ‘When The Patient Is A Googler’ is a scathingly arrogant attack, describing his Googling patients as “suspicious and distrustful, their pressured sentences bursting with misused, mispronounced words and half-baked ideas.”

Just a tad oversensitive to having his authority undermined, perhaps?

Dr. Haig writes:

“Some patients don’t want to know what’s wrong with them, what medicines they’re taking, or even what kind of operation you’re planning to do on them. ‘Just get me better, Doc,’ is all they say.”

Now there’s a nice compliant, well-behaved kind of patient who would never even dream of undermining Dr. Haig’s authority by trying to learn about their own medical condition – and then coming up with any of those pesky  “half-baked ideas”.

EARTH TO DR. HAIG and others of your ilk:  if enough of us continue to have our cardiac symptoms dismissed or minimized or  – worse! – misdiagnosed (as I did when that first ER doc told me I was just having acid reflux instead of a heart attack), then you can expect more and more of your patients to start doing their own Googling research in an effort to educate themselves as much as possible about what is happening to their own bodies.

The clear reality is that both the volume of medical, health and wellness material that is readily available out there (and the number of people who regularly access it) are increasing, whether people like Dr. Haig like it or not.

The website WebMD alone gets over 40 million visits every month. According to the Pew Internet and American Life Project, 80% of us use the internet to “prepare for or recover from” our doctor visits. And a reported two-thirds of patients apparently want their doctors to recommend reliable website resources for them.

Dr. Foxman adds that there are, of course, cyberchondriacs who believe that whatever condition they’ve read about on the internet must be the horrible ailment they have. And the amount of sheer unadulterated trash online is mind-boggling.  That’s why Dr. Foxman recommends reputable patient resource sites like the Public Health Agency of Canada.

Medical Googling is not only for those patients who want to sincerely learn and ask questions about their own health, but online searches can also be a diagnostic tool for physicians.

Australian researchers reported in the British Medical Journal on their study that chose 3-5 search terms for hard-to-diagnose illnesses, and then looked at how Google did compared with reports published in the New England Journal of Medicine. The study found that doctors who use Google to help diagnose difficult cases can find a correct diagnosis over 60% of the time.

How I wish that the first ER doc who sent me home in mid-heart attack with an acid reflux misdiagnosis had instead tried Googling my symptoms (central chest pain, nausea, sweating and pain radiating down my left arm). I’m now fairly confident that Dr. Google would have steered him to the correct diagnosis of myocardial infarction.

The British Medical Journal also notes that doctors have been estimated to carry an astonishing two million facts in their heads to help them diagnose illness – but Google gives them quick access to more than three billion medical articles.

Who can keep up with three billion medical articles?

I like to think that I was really just helping out my wonderful cardiologist by passing on to him what I’d Googled about that FDA Drug Alert.

Check out Dr. Foxman’s blog DocTalk, or (if you insist) Dr. Haig’s petulant piece in TIME.

And for dependably reliable information about women and heart disease, visit the websites  The Heart Truth or WomenHeart: The National Coalition For Women With Heart Disease or Mayo Clinic.

Thanks also to Kevin McCarthy, who recently reminded me of the comprehensive site called Up To Date, which offers evidence-based general medical information for both patients and clinicians (by subscription); this  independent site (unlike some others run by those with the letters M.D. after their names) accepts no advertising or industry revenue.

See also:

Q:  Are you a Medical Googler, too?

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Published by Carolyn Thomas

30 thoughts on “What doctors really think about women who are ‘Medical Googlers’”

  1. Pingback: Academic Flirtations of a Nonexpert

  2. Yes! I google….I do not undermine my doctors…they are human,cannot possibly know EVERYTHING, everyone is different, as we all know…. Yes, they have studied and know more than I do…..I have many issues with my health: advanced cardiomyopathy, enlarged aorta, immune system is weak, have diveriticulitis, sigmoid burst, had colostomy bag (reversed), 4 years of rejecting sutures, cysts formed, many surgeries….still have one small wound open….cellulitis, MRSA, had gangrene – almost lost foot and arm… thin skin on foot and ankle (if hit, takes a year or more to heal). I am allergic to 13+ medications, I as well as my doctors wonder about a few of them… plus have issues taking too strong or too much medication at once…. usual things also osteoporosis, neuropathy, carpel tunnel, multiple fractures in my back, had left eye removed, etc….

    Most certainly, I want to know all I can possibly know about my own health. If I find something, I would ask my doctors about it, for their opinion and discussion….my doctors are amazed that I care enough or try to help myself, more than some patients….. and some of the things I have found, has also helped my doctors with diagnosing me, in some cases, because I am such a puzzle too them…..

    I do believe though, there are people who take things to extreme and question their doctors….they should ask their opinion,or discuss, if they feel they may need something different, or wonder about medications they are taking, not question them! Googling does help, gives suggestions, food for thought, but as with everything, should be done in/with moderation.

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    1. Thanks so much for sharing your unique perspective here, Debra. You have a long list of serious conditions – you’ve had more than your lifetime quota by now – so please don’t have any more diagnosed! 😉 I’m guessing that by now, you know more than many health care professionals do simply because you are living every day with multiple symptoms and diagnoses. You sound like a curious and involved person – no wonder you seek as much information as you can about your own health, plus you have doctors who have become true partners with you in your care plans. They must be so pleased to have such an informed and involved patient! Best of luck to you….

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  3. Carolyn, your writing is simply fantastic. I really enjoyed reading this post.

    I can’t tell you how many times I was told not to Google by the dozens of specialists I’ve seen throughout my Lyme journey. I now laugh at them.

    The thing is, and not all but most don’t like the word “challenge”. How dare we as a patient and one who’s very in tune with our own body present the latest scientific research? We are going to in most cases be called unruly.

    Well I don’t buy that. And I was even banned from one entire medical group because while trying to figure out why my body was going haywire, I was doing what I called being my own advocate. If it were not for Google, my husband never would have found a site called Lyme.net and never have connected with the lady who gave him the name of the Lyme specialist who saved my son’s life.

    My current GP of the last 6 years is a fabulous man. I can present him with any idea I read about and he treats me like a human with a brain. That’s the way it should be.

    Google away people!

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    1. Thank you so much Christine for weighing in here. (Readers, please visit my post about Christine’s horrific 2 1/2 year search for a correct diagnosis – a story that happily has a positive ending!)

      You more than most know how very important it is for all patients to learn as much as possible about what’s happening in their bodies, to ask questions, to keep searching until they find the answers they need. Yet just last fall, an international campaign to convince browsing patients to stop turning to Dr. Google purchased Google AdWords for symptoms that people commonly plug in to the search engine. Because of that, the first search result would then read: “Don’t Google it, check a reliable source.”

      Your own story is a cautionary tale, however, of what can happen even among the best educated physicians in modern medicine when they believe that they and they alone have all the answers – even when, as in your case, they clearly don’t.

      Best of luck to you, Christine…

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  4. Yes I’m a medical Googler. I’ve had Lymes for almost 13 years and this last flare up is the worst. I have to do the research because I can’t find a Lyme doctor in central Illinois covered by my insurance. It helps me to see I’m not crazy and I’m not the only one with my symptoms.

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    2. If it weren’t for Google and Lyme sites most of us lymies would be out of luck! We would not be aware of anything and would have no contact with others that have the same issues. We have to be proactive in our healthcare! Everyone should whether the docs like it or not. As with most of us, it took years of illness for my Lyme diagnosis and without the information obtained on sites I would not have known to find someone to do IV’s for my neurolyme as my doctor only prescribed 2 weeks of antibiotics after 7 yrs of illness. I’ve done pretty well but relapsing now. If it weren’t for the internet our govt. would have pulled off its crime of denying Lyme forever.

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  5. Carolyn,

    Good blog. I, for one, encourage my patients to become Googlers as they have a lot more time to focus on their problems than me or any of the other physicians they see.

    We generally have to see 20-30 patients a day in order to make ends meet and don’t have the time to do nearly as much individualized research that any of the patients do. My own experience is that when I do start medical research on a patient that is troubling me, I often wind up spending an hour or more before coming up with either a satisfactory diagnosis, work up plan or plan of care that’s acceptable to me or the patient. Imagine if we were to do that on every one we saw that presented with typical or atypical symptoms … we’d only have time to see 3-4 patients a day.

    So I find it immensely rewarding to have a Googling patient with whom to work. It’s not unusual for both of us to learn a lot between exam room visits and to more rapidly discover and adjust our plan of care to the ever changing knowledge that’s exploding around us.

    A critical tool that is necessary to help you is access to the electronic record. I am one of the few physicians that believes the patients should be the primary users of the electronic record as they are the only ones who can adequately validate any of the information in the chart. Right now, unlike all banks and most businesses, we don’t have a system where data entered is validated. The result is a lot of “garbage” that can absolutely interfere with our decision making. This isn’t the case with patients like you who make sure the information in our system is up-to-date and accurate. This accuracy dramatically speeds up the time to correct medical decisions and something that I hope you are doing.

    We do run into problems where both of us will agree on a test only to be thwarted by the insurance lack of coverage for the test or procedure. If the cost of the test is prohibitive this can lead to hours of challenges before it is finally approved or force us down another path. But insurance coverage and medical costs in general are another topic.

    Bottom line, patients like you are very wonderful patients. I just wish there were more of you. Keep up the good work!

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    1. Thank you so much for your thoughtful response, Dr. V. Here in Canada, patients have instant (secure) online access to all medical test results and lab reports via government health care programs like MyEHealth.

      As a patient whose doctor’s office has “misplaced” crucial medical records in the past, this is a huge leap forward in helping patients become more involved and accountable for informed self-care. This is my health, my body, my data.

      Thanks again.
      cheers,
      C

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    2. Dr. Voran, I wish you were my doctor.

      My previous doctor said to me after my recurrent chest pains “What do you want me to do about it? Your heart sounds fine to me. Stop Googling, you’re starting to sound like a hypochondriac”

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  7. Thank you Carolyn, for this truly sage and informative article. I just read your post on Inspire. I like your take on being a Medical Googler. I became one when my husband was diagnosed with Stage IV NSC Lung Cancer in 2/09.

    I learned volumes about his disease online that I could not have found on my own. Knowledge is power, and using it wisely helped us navigate the mine field of modern medicine.

    Today would have marked 19 years since our first date. He passed in June of this year. As his caregiver and spouse, I am now searching for ways to move beyond my grief. So I guess I am a Bereavement Googler now. Having the ability to research your concerns independently is a magnificent form of self-healing and advocacy.

    Glad to have met you, online. Keep up the good work!
    Peg

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    1. My sincere condolences on the death of your husband, Peg. This will be your first Christmas holiday season since his death – a commonly difficult time for bereaved spouses. Here’s a useful resource for you (part of your bereavement Googling now) from Victoria Hospice, where I was the Communications Coordinator from 2000 until my heart attack two years ago. Their website sections on grief and loss may be especially helpful to you now, particularly this publication on getting through a season that for others means joy and happy times with family. Good luck to you, Peg.
      Cheers,
      C.

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      1. Thank you so much Carolyn for your kind and caring thoughts. And thank you for the very insightful link to coping with the holidays after the loss of a loved one.

        I read the information, and will go back to it again as the holidays are bringing on many new challenges and unexpected emotions, just when I thought I was beginning to make progress. Five months is still very new in this process, I know. If it is alright with you, may I share this link with others on Inspire who are also grieving as I am? Please let me know if this is ok.

        I wish you and your family joy in abundance at this magical time of year, and only good health and happiness in 2011. And beyond!

        Many thanks. Peg

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  8. Hello Carolyn,
    Very glad to meet another Medical Googler! I was a googler before google already in 1995. I had at that time recovered from a Breast Cancer and I was very curious to learn about the disease. I searched at that time all I could about cancer and continue to this day.

    I can say that internet search also was my helper in getting proper care. I am subscribed to several medical journals, libraries, and other respected sources of medical cancer information.

    The internet told me extensively about what FDA had registered as adverse events of tamoxiphene (hormonal therapy for breast cancer), internet told what to watch for while on tamo, internet told me which blood tests I should make to monitor for signs of deep vein thrombosis, the internet told me to have a bi-annual ultrasound to monitor intra-uterine thickness.

    What my oncologist said to all this? He dismissed me, saying this is all crap and that I should take tamo as ordered. Of course, I did not pay a dime to his nonsense, and took all these tests, privately paying for them since he would not prescribe them…

    Result, had twice increased intra-uterine thickness, got a curetage+biopsy, and after the second one, with the oncologist’s agreement this time, I stopped taking it at 4.5 years instead of five.

    Needless to say that for some reason, tamoxiphene regime left me with increased cholesterol that does not surrender. My cardiologist suggested to make a complete thrombophilia check-up that showed that I am genetically inclined to deep vein thrombosis and the haematologist was very surprised to hear that I was for 4.5 years on tamo without previously screening for DVT…..

    Later on, my internet search saved my shoulder from an undue operation for rotator cuff tear which was “repaired” with specialised physiotherapy..

    So, I am also adamant on the need for patients to get informed about their condition. The more they know, the better they will be able to collaborate with doctors and understand whether what they prescribe is useful for them.

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    1. Hi Catherine – you are SO RIGHT about the need for all of us to become informed about our own health conditions. Our doctors and other health care providers are part of our team – but we are the MOST important member of that team. Good luck to you!
      Cheers,
      C.

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  9. Hi,
    Just wanted to thank you for confirming what I already know.

    My twin brother died from SCD and at autopsy it was determined that he had undiagnosed severe hypertrophy. Prior to his death, I had complained non-stop to my docs for years that I was just too tired and didn’t feel right. I was always dismissed as being depressed. Even after bringing the autopsy report to my doc and requesting an evaluation (I’m a twin and hypertrophy is usually genetic) because I kept getting dizzy, I was still dismissed.

    If it weren’t for my research at reliable sources (like WomenHeart and the Cleveland Clinic)on the internet, I would be dead.

    Evidence in hand, I finally had to threaten a lawsuit if I didn’t get a referral to a cardiologist. To further aggravate the situation, even after I was finally diagnosed with idiopathic dilated cardiomyopathy, my “former” cardiologist just didn’t listen to me regarding the symptoms I was having. He refused to refer me for the necessary Electrophysiology study to determine why I was still getting dizzy while on optimal heart failure medication. I’m not sure if his bias was based on the fact that I’m young, a woman, or what.

    I do know that as soon as I found a new cardiologist, his first question was: “What don’t you have a defibrillator?” Since receiving my ICD (I’m now on my 3rd generation CRT-D), my quality of life has vastly improved. The ICD’s have saved my life 6 times.

    I no longer act like an uninformed patient. I treat my docs with the respect that they deserve as “differently educated” humans, specialists in their field and I work WITH them as part of my healthcare team. Such an empowering position to be in.

    I encourage all woman and men to take an active roll in there own healthcare. It could be the difference between life and death.

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    1. Hi Sandra
      Unfortunately yours is not an uncommon story. Our chance of being misdiagnosed in the E.R. in the middle of a cardiac event is about one in 50 – UNLESS we are women under the age of 55, in which case our chances of misdiagnosis are seven times greater. Congratulations on your persistence (and your successful ICD implant!) You know better than most that, for all patients, KNOWLEDGE IS POWER!
      cheers,
      C.

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  10. Carolyn,

    Thanks for this lively, informative, dead-on accurate post! I am a “Medical Googler” from way back, and I suppose that it could be considered both a blessing and a curse to the doctors who treat me. Overall, however, I believe that an informed patient makes the best medical decisions – armed with all of the most recent data as analyzed in medical abstracts, prestigious journals, and well-designed research studies found around the web.

    Whatever did we do before the age of the internet? How could anyone bear to not know the most recent, up-to-date treatments and information about his or her condition or disease? It would take days of endless, tedious sifting through sterile medical library stacks to find anything useful to the average patient, when considering all possible treatment options or even learning the fundamentals about one’s disease.

    I can see my current cardiologist visibly cringe when he sees that I have downloaded and printed out some medical article or expert opinion from a scholarly medical journal or medical blog. Just yesterday when I handed him a study about the rarity of well-designed, reliable studies on women and ICD’s (as in, they pretty much don’t exist) , he hastily glanced at the paper, quickly thrust it back at me, and mumbled dismissively, “yeah I’ve seen that one,” then went on to discuss my current EKG reading without missing a beat. I boldly (for meek little me!) reiterated my concern about the lack of studies and accurate follow-up that proves the efficacy of ICD’s in women with dilated cardiomyopathy and low EF in reducing long-term morbidity or mortality (those are medical abstract words!) and he warily conceded, “yes, I guess it does raise some questions.”

    Whew….like pulling teeth! And he seemed angry that I had brought this article to his attention, even though he was the one who had told me to “check out the studies on the internet and you’ll see that women tend to do better overall with ICD’s when they have an EF in the same range as yours…..”

    I believe that ideally, the patient and doctor have a therapeutic relationship, and are partners in treating whatever disease is severely affecting their health and quality of life. It stands to reason that most patients come to know more than most doctors about their own bodies, how they feel, what works for them, and what kinds of treatment they are amenable to, rather than being patted on the head like Father Knows Best and told to take their medicines like a good little girl! And yet….that archaic attitude is still alive and well, although it is not as blatantly apparent as it once was.

    It has been my experience that the more arrogant, patriarchal type of doctors (and some female docs occasionally) need to be mollified with a real admission of admiration for their knowledge, skill, and experience before plunging forward enthusiastically with the contents of your latest Google search on the subject – and then asked, “what is your opinion?” or “what do you think, Dr. So and So?” I have found that I am met with less hostility and resentment, at least on the surface, when I express my – very genuine in most cases – respect for what they do.

    A doctor should be an ally in health care, not the enemy. In this day and age, a patient has to be his or her own best advocate, and is responsible for seeking and insisting upon the best possible therapy and treatment available, while pushing for up-to-date answers and solutions. An informed patient, in theory, should be a better patient – more compliant with therapy and motivated to continue with it. There is no reason for doctors to resent, dismiss, attack, or belittle any patient who is sincerely interested in staying current and understanding his or her disease. Knowledge is power….

    This is an excellent post, and so well expresses my own feelings of frustration with the medical establishment when it comes to wanting to be a well-read, well-informed partner in my own health care. Your observations are right on the mark.

    Medical Googlers rock!

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  11. Carolyn…
    I truly appreciate the comments u left on my blog. It certainly makes the *extra* effort worthwhile to know I am *making a difference*!!! I love medical googlers… I teach them, they teach me, and the discussions are usually informative and enjoyable. We are a team. And in the end… if you, as the patient are satisfied with your decisions and your education, I have performed my job well.
    Please help me spread the word!
    Howard Luks, MD

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    1. I wonder if younger docs, fresh out of medical school and more tech-savvy than their more experienced peers, might be relatively open to their patients “teaching them”, being part of the “team”, and becoming “e-patients”. Not sure how old you are or how long you’ve been practicing medicine – or have you always felt this way?!?!?

      Thanks, Howard!
      cheers,
      C.

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  13. Hi Carolyn,

    Me – myocardial infarction, stents, then rehab. Lots of people (including women) in rehab just trying to stay alive – over thirty of us in my group.

    I seem to be feeding them items from the Net, especially Google, in ever increasing amounts. I must pass on your blog. You had an appalling experience and you’re lucky to be alive. What a waste that would have been, partly because you’re truly inspiring; but I’m also aware that you are probably more inspiring because of it.

    I just had an ‘oops’ experience with my GP. She said I was becoming too academic, but now we are on good terms and I know, for example, she will pass on the very simple fact that if one takes Statins, one should also take 75mg of CQ-10 daily – critical!!

    On that point, Statins do not just reduce the liver’s output of CQ-10, but that of various other enzymes also – something inportant to Google there.

    Best regards and I was delighted to meet you – Eric.

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    1. Thanks so much, Eric. I think your doc’s observation (you’re “too academic”) means the balance of power is shifting – not a comfortable place to be for many docs.

      If you haven’t already checked it out, visit Medpedia for their News & Analysis pages. More interesting stuff to share with your cardiac rehab group!
      C.

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  15. Hi Carolyn,

    As usual, you hit the nail on the head. This article is great. The things we learn on the internet can help us to ask the right questions of our doctors. They are just going to have to get used to the idea that we are no longer compliant sheep who will do whatever they say without question because we are not going to stop googling.

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