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The following is a guest post by Carolyn Thomas, a heart attack survivor and e-patient who excellent blogs talks about her experiences and lessons learned at Heart Sisters.
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 minute I was sent home from hospital last May following my heart attack, I started mainlining Google like it was a drug, and 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.
That’s how I happened to learn about the WomenHeart Science & Leadership Symposium for Women with Heart Disease at Mayo Clinic last fall: I found it on Google. That’s how I found hundreds of other Heart Sisters – all survivors like me – on the National Coalition for Women With Heart Disease WomenHeart online support community. I found them on Google. And that’s how I began subscribing to regular cardiology news bulletins from medical journals, clinical research sites, and university heart institutes. I found them all on Google.
And that is also how I came to inform my cardiologist last month during my regular follow-up visit that doctors should no longer be 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 Drug Alert – one full week after the warning had been issued.
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 medical condition and then coming up with all those half-baked ideas.
Attention Dr. Haig, and others of your ilk: if enough women continue to have their symptoms dismissed or minimized or – worse! – misdiagnosed (as I did when the 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 the volume of medical, health and wellness material that is readily available out there, and the number of people who regularly access it, are both increasing, whether Dr. Haig likes it or not.
The website WebMD alone gets over 40 million visits every month. Up to 80% of internet users have sought medical information online. 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.
I now wish that the ER doc who sent me home in mid-heart attack with an acid reflux misdiagnosis had instead tried Googling my symptoms (crushing chest pain, nausea, sweating and pain radiating down my left arm). I’m now fairly confident that 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.
Mind The Gap 
Hi Stephen and thanks for the plug for Heart Sisters!
Cheers,
C.
That ER doc who misdiagnosed you was an idiot. A lot of women with MIs are misdiagnosed because their symptoms are “atypical” (i.e., not the same as men’s), but crushing chest pain, nausea, diaphoresis, and pain radiating down the left arm are absolutely classic MI symptoms.
Hi Stephen and thanks for posting this informative newsletter.
Carolyn,
Most doctor underestimate the power of the internet. Doctors since they are supposed to the “experts” and our entry into the “naviagting the health care system. There are lots of different kinds of information on the internet, some of it true, some of it opnion. It takes a smart person to discern what is good and what is bad infomation. There is a site for annorexia on the internet. The doctor should be a partner in the “google” world and should work to see the patient has right information instead of discounting that the patient “does not what he/she” is talking about. It says that there really should be communnication between patient and provider on a more educated level. The internet has opened up a different way of communicating which may nor may not be always be a good thing. There has to common sense and communication instead of assumptions that the patient does not know anything. I also advocate the “patient advocate” that has the patient’s interest at heart. Thanks for sharing your googling story. Becky
Thank God for Google! I have survived more than one medical error before Google. Since Google I have prevented complications, medical errors, eliminated the need for CAT scans and more by being informed and knowing the right questions to ask. It’s my health and my life. I don’t use doctors who don’t like knowledgeable patients who are involved in their own care.
People often talk to me about difficulties they have when asking their doctors questions or telling them about information they found on the Internet when I’m speaking to groups. I explain it’s not necessarily the fact that they did the research soke about it during an appointment, it’s the “way’ they communicate the information to the doctor that is the problem. If it is done appropriately in the context of their “story” and is posed correctly then there is less of a chance the doctor will feel threatened or defensive.
Carolyn,
Great post. I hope the media start to pick up on this. I actually work in the health field, but on the business side, and I’m continually appalled at the medical mistakes which are made by well-educated physicians who are not keeping up in their field. Of course, there are some logical reasons for this, but the affront that many take when a well-meaning (and self-invested) patient brings new and valid information to their doctors is shocking. I’m not quite sure what is going on in our med schools that convinces these very smart people that they have all the answers, and that the body of knowledge available is only valid if they find it, but it is really sad. Personally I made the “mistake” of informing my OB practice about a new (approved by the FDA for over a year) genetic test which was cheaper, more comprehensive and less invasive than the ones that they offered. I was dismissed by three of the practice doctors because it surely couldn’t be as good as what they had–all said without any investigation–and after my fourth prenatal visit, I was fired by the practice for a “lack of trust” in the physicians. Of course, this was true. I had lost trust in them. I was already looking into birthing centers and midwifes to see me through my birth, but the attitude of these smart women in this practice–most who were my age–was beyond suprising.
Excellent comments – thanks so much to all.
As Margo reminds us, often it can be the way our online research is presented to our docs that influences their reactions to it.
SmartFire, I just saw my longtime (34+years!) family doc this morning for a routine meds review appointment. After decades of me trying to pass along to her interesting research I’d been finding (both online and long ago in print before the arrival of Googling!) today something finally “clicked” for her. I was in the middle of telling her of some emerging cardiac research out of Mayo Clinic, and she suddenly looked squarely at me as if seeing me for the first time ever – and then she said: “When you come across this type of information, can you email it to me?”
I almost fell off my chair. And then I almost tapdanced out of her office. And to think it only took 34 years for us to get to this point in our relationship!!! Yay!
Cheers,
C.
Carolyn, thanks again for your excellent post and follow up comments! Happy Googling!
I agree with Margo’s comments for sure. If more e-Patients (or Medical Googlers if you prefer) would present the information to the doctor in a better and less aggressive way, then doctors would become more open to the involved patient. Of course, sometimes this is hard when the doctor is running in and out of the room before you can have any sort of intelligent interaction.
This said, the doctors also need to be more open to the active patient. Of course, as you said, they won’t really have a choice. They’re getting more active and involved patients whether they want them or not.
Thanks for the article! From a medical googler.