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How to Get the Most out of Internet Medicine

Why I Love Patients Who Use the Internetelegant businesswoman with laptop in orange chair

Ten years ago when I was in a group medical practice and patients would bring in reams of paper printed off the Internet, my partner and I would look at each other and we’d roll our eyes.

Killing trees aside, we didn’t attribute our dismay to the patient taking the initiative in learning about her healthcare (that was refreshing!). Rather, there were two other factors we found frustrating in this behavior:

  1. the quality of the information being presented and;
  2. the patient’s preconceived notions (she’d already been “sold” a bill of goods).

However, as the Internet has evolved and the information has become more sophisticated, so has the Internet User.

Now my patients bring me one page printed off the Internet, or better yet, notes they’ve taken and it makes me SMILE! They’ve often sifted through basic information and taken the trouble to learn about their condition so we can have more sophisticated discussion on the possible causes of her symptoms, and the available options for treatment. In other words, she’s DONE HER HOMEWORK! and it makes my job more interesting and satisfying.

Yet in usual cat-and-mouse fashion, as the Internet User has become more sophisticated, so has the unscrupulous Internet Purveyor of Snake Oil.

old_medicine_bottles Common Sense and Snake Oil

The problem with Internet medicine was and continues to be commercial interests. Since its inception the Internet has predictably been used by unscrupulous people to sell health care products (weight loss aids, “menopause treatments”, “cures for cancer” and other magic potions) that promise undeliverable results and have no basis in scientific knowledge. In their quest to feel better, patients will often throw common sense out the window and allow a sales pitch seduce them into tossing their money away on an untested product.

In our frantic search for causes and solutions to our problems we have a tendency to latch on to magic wands and easy fixes–“snake oil” that hasn’t undergone the rigors of scientific study.

So How Do You Get the Most from Internet Medicine?

Today’s Internet User is more sophisticated than the User of ten years ago. She’s probably been tripped up a few times by the snake-oil salesmen and has learned to recognize the hard-sell sales pitch of an unscrupulous person or corporation. Yet people still have trouble finding good sources of medical information to answer their questions. Two tips to find the best sources of medical information are:

Just say “NO” to “BUY NOW”

Look for sites with no vested interest in commercial products. The site with that Shiny Red “Buy Now” button is an easy clue the site may just be pitching you a product that has no scientific support. Save your money and click away…just click away from the site! And here’s a well kept secret: THE MOST EFFECTIVE TREATMENTS FOR MANY MEDICAL ILLNESSES ARE FREE!! (e.g. Diet and Exercise).

Some sites I recommend are the NIH.gov and CDC.gov sites. Notice I don’t mention the FDA site in this short list (my rant on the FDA will come in a different post). If you need other sites, check my blogroll from time to time: I’m always on the hunt for quality links for my patients.

“Comparison shop” your “facts”: Try to get information from multiple sources:

Chances are if you find similar information about a condition on multiple non-commercial sites, you’ve uncovered quality facts that have endured the slow machinations of the RADOBLIPCOS.

If you have a health care provider you trust, bring your research in to her to help you put it in the context of your own life. There are many good treatments out there for various medical conditions. However, like stylish clothes, it’s not a “one size fits all”: the best treatment for two individuals with the same medical condition is a specific plan tailored to each individual.

Don’t let the Internet Make You Sick

Just because we have “fatigue” it doesn’t mean we have Chronic Fatigue Syndrome or Cancer or Autoimmune Hemolytic Anemia or Liver Disease. We may just be sleeping poorly and working too much, or perhaps we have small children at home.

Many common physical symptoms are present among hundreds or thousands of diseases and non-disease processes.

Look at other symptom lists for other diseases and notice how often symptom lists overlap. Some symptoms that appear on many different lists are: fatigue, headache, nausea, muscle aches, abdominal pain. These symptoms are so common as to be nearly useless for diagnostic purposes.

If Internet medical sites are making you anxious, write down your questions, make notes on sites you find thought-provoking, and bring them to your health care provider to put them in the context of your life and assess if you need further evaluation or treatment.

Keep Looking and Keep Asking the Questions

Even if you find good treatments, they may not always be available to the public. The most recent and iconic example of this I can think of is the use of mifepristone to treat pain and bleeding from fibroids. Why is a cheap, effective drug to alleviate the most common symptoms women experience not available by prescription?? (As an aside I’m working on buying mifepristone from a Canadian pharmacy (available in 200 mg doses) and having it compounded by a quality compounding pharmacy into 10 mg doses used to treat fibroids so my patients can have access to this solution).

Other examples:woman_windsurfing

Why isn’t misoprostol easily available in third world countries to treat post-partum bleeding?

Why aren’t generic drugs for HIV widely disseminated in the populations who need it most: South Africa?

The only way these options will become available to people in the future is for the public to demand reliable information and access. How to do this? Start by Emailing your federal and state political representatives. ….         🙂 Happy Surfing.

Share Your Experience

What are your ideas for obtaining access to reliable information and treatments?

What has your experience been with Internet Medicine? Please share the good, along with the bad and the ugly.

What are the best sources for Internet Medicine you’ve found?

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{ 7 comments… add one }

  • Leigh Ann February 20, 2009, 10:59 am

    How interesting. I love hearing about the “then” and “now” from doctors. I think your tips are right on.

    I once found a big error on a Library of Congress site! It wasn’t medical–had to do with a myth about black-eyed peas–but still, it was the LOC!

    I agree with your recommendations for sources–CDC and NIH. I’m interested to hear your thoughts on the FDA. I’d, of course, recommend the site for the magazine I edit, which is written by health-care providers. 😉

    Found your post on Twitter. Nice to see you there.

    Leigh Ann Hubbard
    Managing Editor
    James Hubbard’s My Family Doctor

    • Shelley Binkley February 20, 2009, 11:08 am

      @Leigh Ann Thank you very much for the positive feedback! I’m warming up for the FDA rant…interesting note about the Library of Congress website; I guess anything’s fallible…

  • cathy March 4, 2009, 1:19 pm

    A doctor who welcomes internet research from her patients? How refreshing! As a patient, I really feel like it’s my responsibility to inform myself on my condition. When my kids have had problems, I’ve turned to the internet – and occasionally ended up with more specific knowledge on the subject (allergies and infant colitis) than our pediatrician. The doctors we see are fantastic, but they can’t be specialists in everything. I think that the key is to do as you suggest – get information from several reputable sites and be aware as you research so that you don’t let the information “make you sick.”

    Thanks for this!

    • Shelley Binkley March 4, 2009, 7:35 pm

      @cathy. TY for the positive feedback. It’s always more rewarding to have a conversation with someone who has done her homework, so I really appreciate patients taking any initiative to educate themselves.

  • WarmSocks April 4, 2009, 1:27 pm

    Great writing! Found your blog through a link from SeaSpray… who I found through a link from Dr. Rob.

    I tend to like WebMD and MayoClinic’s websites. They usually have good information that’s detailed enough to actually be educational, yet not so technical that I need a dictionary to wade through it. I also like http://www.LabTestsOnline.org and http://www.RxList.com

  • Arla C. Meyer April 16, 2009, 6:06 pm

    Thank you for starting this thread. Have you had any luck withthe compounding of Mifepristone into 5 or 10 mg doses? Ive been using Evista 60-180 mg q.d. for uterine fibroids, but the side effect profile is making my M.D. nervous. I found both of these medical treatment options on the internet. Even though a surgical procedure would have been over months ago, I think I’m glad I’m trying the non-surgical options available first. If you are able to get the lower dose, please let me know how you did it. Thank you.

    • Shelley Binkley April 17, 2009, 9:23 am

      Hi Arla!
      There are exciting new developments in the treatment of fibroids with various medications. Mifepristone is not the only option. There is new data available on anastrazole for treatment of fibroids. Anastrzole is a drug used to treat breast cancer and marketed under the trade name “Arimidex”. It’s an “aromatase inhibitor”. It blocks conversion of estrogen precursor molecules to estrogen in breast cells, thus reducing the risk of recurrent breast cancer. However, it also blocks this conversion in other tissues such as fibroid tumors. An small study published in the December 2007 issue of Obstetrics & Gynecology demonstrated a 55% average reduction in fibroid volume in women who took anastrazole, 1 mg daily x @90 days.
      In addition to anastrazole, the NIH is presently conducting a study on a new molecule, a modified mifepristone, CDB-2914, to reduce fibroid volume. Hopefully the results of this study will be available in 2009 or 2010.
      In my practice we are exploring using anastrazole for treatment of fibroids. We are also working with a compounding pharmacy to try to get mifepristone compounded to 5 and 10 mg doses. We sent the literature to the compounding pharmacy on the use of mifepristone for fibroids and we are waiting to hear if they will agree to compound it. Hopefully we will have this option available for patients in May 2009.
      Thank you very much for your comments. I’m working on a new blog post describing these exciting options on the frontier of fibroid treatment.
      Shelley

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