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Cardiovascular Medicine, Technology

Dr. Google: Threat or menace?

Dr. Google: Threat or menace?

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases will share their unique stories; the second in our series comes from Laura Haywood-Cory, who survived a rare and potentially fatal heart disorder.

Three years ago, when I was 40 years old, I had a heart attack, caused by a rare thing called a Spontaneous Coronary Artery Dissection, or SCAD.

Arteries are constructed in layers, and a dissection is when the inner layer tears away from the middle later. The torn flap of artery creates a blockage in blood flow to the heart, which can cause a heart attack, cardiac arrest, or death.

After two cardiac catheterizations, six stents, and a week in the hospital, I was sent home with precious little information other than: “SCADs are rare. You’re lucky you survived.”

I’m grateful to the doctors, cath lab staff and everyone at the hospital who took good care of me. I know they can’t possibly know about every long-tail edge case that walks in their doors. But the first two weeks home from the hospital were terrifying. I would keep myself awake for as long as I possibly could, because I was afraid that if I went to sleep, I might never wake up again. That’s a scared and lonely place to be at 3 AM.

As a child of the digital age, I went searching for answers online. As part of my research I came across an online support community, where I connected with other women who’d not only had a SCAD but were several years down the road of recovery and were doing well. These women have been a real lifeline for me, and if not for them, I’d still be lonely, scared, and without any real information on my condition.

Recently I was reading KevinMD and found a post of interest. In the piece, called “Saving patients from internet health information,” Stewart Segal, MD, expresses his frustration with patients who self-diagnose via Google and then decide, unilaterally, on different courses of treatment than what he has prescribed for them.

As a patient with a rare condition that most cardiologists have never encountered, I and others like me have had to become our own experts. And since our numbers are small, we aren’t able to gather for support in person; we do it online.

It seems to me that the answer isn’t to discourage people from seeking medical information from “Dr. Google,” but rather to teach people, starting in school, some critical thinking skills. How to sift the online wheat from the chaff and how to determine which sites have credible information, versus ones that are just selling the latest formula of snake oil. Snopes.com exists for a reason, after all.

As patients, we need to not expect perfection from our doctors until we achieve it in ourselves. And doctors need to give themselves permission to not know everything and to not feel threatened by empowered, educated patients. Who, yes, look things up online.

Laura Haywood-Cory lives in Durham, North Carolina. She recently received a 2012 Woman’s Day Red Dress Award for her role in a Mayo Clinic study on the feasibility of recruiting patients through the use of social media.

9 Responses to “ Dr. Google: Threat or menace? ”

  1. Suzanne Adair Says:

    Excellent post, Laura. Had I not used Internet research plus what I knew from the anatomy and physiology I received for my Microbiology degree, I’d be dead by now. My case of Hashimoto’s Thyroiditis was misdiagnosed as heart disease, despite my lack of plaque and other risk factors. Doctors cannot possibly know everything, especially for rare conditions like SCAD, or conditions with symptoms that look similar to those of other disease.

  2. Carolyn Thomas Says:

    Well said, Laura. I too discovered Inspire’s WomenHeart online community as a newly-diagnosed heart attack survivor. What a relief to “meet” other women who, like me, had been sent home from the E.R. in mid-heart attack with misdiagnoses ranging from indigestion to anxiety to menopause (a perfect all-purpose Dx!) In fact, according to the NEJM, women heart patients under the age of 55 are SEVEN TIMES more likely to be misdiagnosed compared to our male counterparts.

    If only the E.R. doc who misdiagnosed me (despite my textbook MI symptoms like chest pain, nausea, sweating and pain radiating down my left arm) had only consulted “Dr. Google” – I’m pretty sure the two of them could have accurately identified myocardial infarction.

    Many doctors are understandably uncomfortable with their patients seeking help online. But this isn’t an issue that’s going to happen someday – it’s already happening! Over 2/3 of patients want their physicians to now recommend credible and reliable online resources for them. There’s a lot of unadulterated trash out there online – we really need our doctors to share their online recommendations with us.

  3. Lynda Terry Says:

    Well, I have something in common with both Laura (I also am a survivor of SCAD-caused heart attacks and have 6 stents) and with commenter Suzanne (had a serious thyroid infection misdiagnosed by my primary care doctor as a “strained muscle,” until I researched my symptoms online and discovered they fit those of De Quervain’s thyroiditis). I also had a cardiologist forget to tell me about a new finding in an echocardiogram, so I had to go online to learn what it meant when I saw it in a written copy of the report. I’ve also had errors in diagnoses and medications being taken on discharge papers and office visit receipts, and cardio rehab educational materials with inaccurate statistics about heart disease in women. I’ve no choice but to go online to educate myself and clear up contradictions in information, etc. My well being depends on it!

  4. Caryl Mauk Says:

    Thank you for your cogent discussion of this issue. As a rather young woman (45) who had a heart attack with no previous symptoms last year, I had similar feelings when I went home after 5 days in the hospital, 2 trips to the cath lab, and 3 stents. I had more run of the mill coronary artery disease, but my recovery has been complicated by recurrent angina that doesn’t fit the patterns the educational materials at the hospital or the cardiologist’s office described. Even as an RN with years of cardiac and critical care experience, I didn’t know what to expect in the long term. As it turns out, I’ve been diagnosed with coronary artery spasms and possibly coronary microvascular disease. Without the help of the women I met online at Inspire.com I don’t know how I could have managed. I met people who had the same symptoms as me at a time when my cardiologist was giving me mixed messages about the nature of my symptoms and telling me I was “just stressed out.” I’ve found a wealth of information about my condition online as well as social support. As Laura says, you just have to learn to separate the wheat from the chaff. Health care professionals can help by teaching patients how to do this and welcoming their questions about what they’ve read online.

  5. Itzhak Brook MD Says:

    I fully agree that patient input and participation is extremely important. I am a physician who was diagnosed with throat cancer and underwent larybngectomy four years ago. There were many instances where my physicians failed to diagnose conditions where my input was instrumental in improving my care.

    One example relates to the blood pressure I developed 16 month after receiving radiation treatment to my neck. I was initially labeled as suffering from “essential hypertension”, the most common cause of high blood pressure in individuals over the age of 65 years. I suspected that the radiation treatment I had received lead to the development of hypertension, but my physicians dismissed it. I started to check my blood pressure myself and noticing that it frequently spiked to over 190/110. After my physicians were unable to come with the correct diagnosis and treatment for this unstable blood pressure, I started searching the Web for answers. I was fortunate to discover a rare entity called “paroxysmal hypertension” that can result from radiation damage to the carotid artery baroreceptors. Only after I contacted the physician who researched that topic did I finally start to receive adequate treatment for this condition.

    Another example was a rash I developed while getting treatment with a beta blocker (Inderal). Skin biopsy labeled the rash as psoriasis. Both my cardiologist and dermatologist did not make a connection between the medication I was taking and the rash. While searching Google Images for pictures of a psoriatic rash I found a picture of a rash labeled as “beta-blocker psoriatic like rash” which lead me to suspect a connection between the medication and the rash. When I consulted my dermatologist and cardiologist about this condition they both admitted that they did not think about it because it was very rare. Happily in my rash subsided after I stopped taking the medication.

    My experience as a patient taught me the limitations of medical knowledge and experience of many of my colleagues. They simply do not always know all the answers or simply do not think about them. It is left to patients to help themselves by search for the right answer. It is also essential to remember that even those of us who have medical knowledge should only assist the experts in treating us and not do it alone. “ A doctor who cares for him/her self has a fool as a patient”…

    Itzhak Brook MD
    Dr Brook bolgs at http://dribrook.blogspot.com/

  6. Carolyn Thomas Says:

    Dr. Brook makes an excellent point about doctors: “…they simply do not always know all the answers”. Of course not. How could they, or anybody, know ALL the answers? (By the way, Dr. Brook, I retold your obstructed tracheotomy tube story in “When Doctors Become Patients” last year at: http://myheartsisters.org/2011/02/14/doctors-as-patients/

    As one Inspire WomenHeart community member just wrote today on this topic:

    “When I first began discussing my condition with my doctor, he said he hadn’t realized I was a doctor. I told him I’m not a doctor but I am a very good researcher. He gave that small, insulting half-laugh that doctors reserve for this response and said that he wasn’t sure he approved of patients doing research.

    “I told him I had no inclination to apologize for it. I said that I knew he was interested in my health, but not nearly as interested as I am. It’s his job, but it’s my life.”

  7. Lynda Cracknell Says:

    I could relate totally to all the comments here. I’ve forwarded the link on to the medical practice I’ve been attending for years. Although not totally (or overtly?) dismissive of patients who research, I look forward to the day when I’ll be viewed as a welcome partner in my health diagnosis and treatment.

    To me, the following para from the original blog is the most powerful of all.

    “As patients, we need to not expect perfection from our doctors until we achieve it in ourselves. And doctors need to give themselves permission to not know everything and to not feel threatened by empowered, educated patients. Who, yes, look things up online.”

  8. AussieKim Says:

    Wonderful work. I read Dr Brook’s comments with great interest and it may take quite a few Drs in similar situations to help us all, Drs and patients meet “best outcomes” more congenially. I was married to a nurse for over 25 years and during that time a few of our friends (doctors and nurses) had also had similar difficulties. Closer to home, I believe my ex as a previously experienced cardio-thoracic nurse didn’t quite believe me when I explained what had happened to me. I also experienced the very worrying feeling when talking to doctors during my initial care that I had to remind them I had a SCAD not a non-stemi/MI etc.

  9. S N Hayes MD Says:

    Educated, motivated, informed (even if by the internet…), and inspired patients are not to be feared by health care providers, but to be encouraged. Encouraged to listen and learn more from their doctors and other caregivers and to make sure that they’re heard. Encouraged to share what they know and what they believe, so that this information can be incorporated into their care. Encouraged to challenge and ask questions about things they are told that they don’t understand or disagree with, until both they and their providers feel there is understanding. Encouraged to have an open mind (not EVERYTHING they read on the interent is true or applies to them) They also must be encouraged to be a fully engaged in their care, even when they don’t want to be (which despite the tenor of Laura’s blogpost and subsequent comments, is often part of the problem). E-patients (empowered, educated, energized, engaged, equipped, enabled….) inspire me and have taught me more than they will EVER know they did. I am a better doctor as a result.

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