I just HAD to post this – I apologize for the deviation.
Today, in one of my favorite blog compilations by HealthworksCollective, a site directed at healthcare providers about technology and issues in healthcare, this blog posting was published, “Dealing with the Growing Power of Medical Googlers.” I just HAD to reply, since this is my usual soapbox topic. Here is my response to this posting by Kenneth Walz:
I am a frequent blogger about this topic. It is nice to hear from a doctor regarding this “cybermania.” I can understand that some physicians may be offended or even angered when patients bring in research they find about their condition on the internet. However, not all of us “informed” patients use the less credible, “consumer” websites as WebMD, Dr. Oz, Dr. Mercola, etc. – nor do all of us walk in with research BEFORE seeing the doctor. Patients are driven to look for answers from websites and forums because they are not being heard by their healthcare providers.
I have a medical, biopharmaceutical and legal background. I know how to look for cogent peer-reviewed scientific research articles – and I have been quite successful in finding research relevant to my not-so-common and often misdiagnosed medical issues. In fact, had I NOT researched my health concerns in several situations, I would NOT have received the necessary treatment for my conditions. My research brought to light the existence of diagnostics, treatments and even diagnoses that my treating physicians had not ever heard about. This I found shocking and was more than a bit disconcerting – docs have the same (or better) access to the websites/search engines on which I find my research (PubMed, Medscape, GoogleScholar, etc. I also contact the researchers personally when I have a significant concern.) My blog, MisdiagnoseMe.WordPress.com addresses this issue quite often.
As a consumer, I expect my doctors to LISTEN to me and take my symptoms seriously. Many times, doctors only seem to hear bits and pieces of my experience, so I have tried to remedy that over the past couple of years by bringing in a printed sheet with my current complaints, concerns and symptoms, my current medications and allergies, and a list of any questions I might have. I have been misquoted or just blatantly ignored in the past, so this way, in my record there exists documentation of what I really told my doctor – I don’t want to risk having inaccurate info appear in my medical records. (a tiny example: I was hospitalized for my autonomic disorder recently – of course, I didn’t have the luxury of preparing my usual summary before I was brought to the ER – typographical errors(?) in one of the dictated reports describe me as “an immature patient that is a very good historian” and stated “patient denies any digestive complaints or problems.” REALLY? I seriously doubt the doctor called me “immature,” and, one of the major reasons why I was admitted inpatient from the ER was my inability to eat due to constant nausea, bloating after eating and extreme constipation. I do believe that these are digestive complaints/problems – right?)
My research and input was significant in my obtaining proper diagnoses for a rare neurological anomaly that was causing several symptoms for which I could have received VERY WRONG treatments (sadly, I already had 5 completely unnecessary surgeries), my sleep disorder, a pituitary tumor, an exceedingly painful and impressive overgrowth of breast tissue in my underarms (it was NOT, as I was told for years, swollen lymph nodes in response to shaving!) and now, this autonomic system failure for which I was recently hospitalized.
It is very frustrating, exhausting and disheartening to have medical professionals constantly “dismiss” symptoms and never even try to put the puzzle pieces together. Based on my 30 years of serial misdiagnoses, I believe that doctors need to improve their diagnostic and listening skills, and be open to doing the research patients are being forced to do to obtain the proper care for their conditions. It takes me approximately 30 seconds to find relevant and current research on any one of my health challenges. I would love to see any of my doctors do this bit of research instead of immediately trying to dump all of my complaints into a convenient pigeonhole diagnosis and rush me out the door. There wouldn’t be an epidemic of “medical googlers” if patients were receiving appropriate care and attention.
We pay over $15,000/yr for our health insurance, plus at least another $5,000/yr on co-pays and medications. It would be nice to see a diagnostic effort equivalent for our input. I don’t enjoy doing the diagnostic research I do – but in my case, I have learned that it is absolutely essential to receiving proper care. I would love to see this trend change.
Sometimes, those hoofbeats are NOT horses, or even zebras – could be an emu!
- Dealing with the Growing Power of “Medical Googlers” (medcitynews.com)