When it comes to self-diagnosis and treatment, the Internet can either be your own Dr. Frankenstein or Marcus Welby M.D. Or somewhere in between. The problem is, without professional help, you may never know whose advice you’re getting. Without knowing it, you can either Google yourself scared, or lull yourself into a state of false security. In all likelihood, you can also waste a lot of time chasing down what is supposedly wrong with you.
Back in the olden times, say 20 or so years ago, we couldn’t do much with online medicine. The best data was locked away from the public. Medical research was only available at university libraries, or through expensive portals. That has changed somewhat, but I wanted to hear from some actual practitioners. So I asked two family doctor friends of mine, Patricia Boiko and Karl Weyrauch who are digitally savvy to put some of their suggestions down about doing online medical research. Here is their report.
We use a variety of digital tools in our daily practice, and even have iPads that we can look things up when a patient brings in their own links and references. Take one of our patients for example: She is an 89-year old grandma who was trying to sort out the results of a lab test known as “Hemoglobin A1c”. It’s a test to find out how high a person’s blood sugar has been over the past three months.
In this case her search took her to results for the word “hemoglobin” rather than “A1c”. Hemoglobin, a measure of one’s red blood cells, tells if a person is anemic or not. It is not the same as “A1c”. It is usually better for the A1c number to be low, but for the hemoglobin number to be high.
So, our patient found out that her number was extremely low for hemoglobin and thought it was bad, not realizing that it was a perfectly normal number for her “A-1c”. She thought she was in dire straits when in she was sailing along just fine. Only after scaring herself silly did she come to us to figure out what was going on. What relief she felt to learn that everything was hunky-dory!
Another one of our patients, a 50-year old woman, came in with an Internet search producing a diagnosis of a rare disease called “Lynch syndrome”. She had been to a breast surgeon for treatment of breast cancer, and a gynecologist for treatment of cancer of the uterus. When she learned that she had a third cancer in a colon polyp removed by her gastroenterologist during colonoscopy, she went on-line to learn more.
She searched for the polyp diagnosis and read that all three of her cancers might be related if she really had this rare disease. When she brought in the printout with her search results, all we had to do was read it and report that she was right on. There is nothing like a light-speed review of the medical literature to pinpoint a rare association of multiple cancers in the same person.
So what’s the moral of these two cases?
You should certainly go ahead and search online to find out more about your medical condition and treatment options. But don’t leave diagnosis to a brain-dead machine, or even a billion-dollar search engine that tries to “not be evil.” What really counts is medical judgment that only comes from human experience and learning from past mistakes. And there’s still a lot of work to be done before that computer code gets debugged.
Back to Strom. I asked my doctor friends what sites they actually use, they suggested UpToDate.com. It is a bit pricey for the lay public, and probably not going to be used by someone who is just searching for something ad hoc. I use a combination of WebMD and MayoClinic.com to start off my own searches. What else should patients do when they prepare for their next doctor visit? My friends suggest you should bring all of your medications in the original bottles and all the herbs and over-the-counter remedies that you take. Their practice has a mobile app where they can do everything from lookup treatment options to re-order meds to communicate with other doctors in their practice.
If your doctor doesn’t “do Internet” then you could bring in a printout of some of the things you found online. In the end, my doctor friends say: “I don’t think the issue is whether or not physicians are tech friendly or not. I think the issue is one of frustration with a patient self-diagnosing. If the physician is not willing to listen to ideas about self-diagnosis or the patients ideas for their care then perhaps they want to get another physician who will.” Well put. I remember one doctor that I no longer see, he was always in a rush. When he finished with his diagnosis, he really didn’t want to hear my point of view. He indicated this by having his hand on the doorknob and trying to make a quick exit from the exam room. I found another doctor quickly after that.