Isn’t Dr. Google a great guy? Always available, funny, well-illustrated, and multi-opinionated. It’s too bad that you never know if you can believe what you read. It’d be cool if someone would just help you figure out what’s what on the internet.
I’d like to start off with 2 true stories.
I had a patient who was certain she had a rare disease called acute intermittent porphyria. Porphyria is characterized by weakness, abdominal pain, neurological symptoms that can progress to paralysis, and sometimes discoloration of the urine if the sample is left in sunlight. She had Googled her symptoms because she couldn’t get pregnant and this was her self-diagnosis. I was the third doctor she had seen because the other two would not consider this her diagnosis. The problem was that she didn’t have any of the common symptoms of porphyria. She had infertility. Porphyria is also not a common cause of infertility. In fact, I think the main way that it affects fertility is that porphyria sufferers feel too weak and ill to have sex.
A young woman was rushed to the hospital with the worst headache of her life. She died of stroke. 2 hours prior to her death, she had been Googling “worst headache of my life”.
Dr. Google wont’ tell you to come in to the ER. And he won’t meet you there or call ahead either, which at least some flesh and blood doctors will do.
So, if any part of your body is experiencing the worst pain of your life, if you are bleeding profusely, vomiting intractably, or having trouble breathing, don’t waste time on the computer. Call for help and get to the hospital. Let people who don’t have to look it up have a look at you. If at any point you are waiting for test results or medication, or just being “observed”, you can entertain yourself by actually reading those certificates that decorate the walls. They mean something, and you can even call those places up and find out if your doc really went to Yale, or State, or won the teaching award 3 years in a row.
If your symptoms are of a less urgent nature, or if you want to confirm what your doctor said, or see if there’s something simple you can do at home, the web can be a great source of information. But it’s important to know where to look.
General sites such as WebMD can be good places to start. These sites will give you basic information about common diseases, their symptoms, and treatments. It can be comforting to have an idea of what you’re in for. Drugs.com is a good place to read about your medications, their uses and side-effects, and interactions with other drugs.
Blogs by physicians can be useful but look carefully at the blog itself. Blogs by doctors fall into 2 categories. Some are writing because they like to write, teach, and hear themselves talk. Mine is an example of that type of blog. Others are promoting a business venture, such as their practice, a vitamin, a treatment, etc. It’s not difficult to tell one from the other. If a sales pitch is going on, read it with grain of salt. Every word may be absolutely true, but it’s worth confirming.
Blogs by patients are not written by experts. But these can be wonderful sources of support, humor, and links to good information. They can also be sites of inappropriate medical advice. If it seems you are being advised by a lay person, look at each statement. is it an opinion or a fact? If it’s an opinion, disregard it for now. If it’s stated as a fact, you can look to other sources to see if it’s true. You can ask your doctor, or you can research the source of the information. Is it a medical paper, respected text, or is it Wikipedia? Even medical papers published in prestigious, peer-reviewed journals are only right half the time. And even the most well-read doctors aren’t always certain which half will turn out to be true. That’s why doctors have journal clubs, to learn how to read interesting papers. That’s also why we take courses in statistics and have to fulfill continuing medical education requirements of approximately 25 hours per year. Eventually, experience sorts it out.
As for understanding medical papers, you can follow some basic guidelines. Papers with large numbers of patients and multiple centers tend to be more powerful than case reports, which discuss only one or very few patients at a time. Randomized controlled trials are experiments, and golden in the eyes of reviewers. Observational studies aren’t as good but some patient groups, like pregnant women, are very difficult to study experimentally and ethically at the same time. Therefore, observational studies may be as good as you can get. Finally, graphs and tables are often the most important and concise points of the paper. If your time and understanding of medicalese are limited, spend most of your time on the graphs.
The one place I would absolutely avoid on the internet is chat rooms. They tend to be sources of poor quality information, not infrequently from anonymous sources with an ax to grind. It strikes me that those who spend the most time in chat rooms are those who have not been successful in their treatments. Patients who have been successful tend to move on, so the information is skewed to the negative. This situation is what the medical papers would call a “selection bias”.
Now that you are empowered with the ability to evaluate the banquet of information available on the web, have at it! If you find something cool, share it with your doctor. She may know all about it, but it may be new to her too, and just the thing that you need. At least, it will open the gate to a diverting conversation for both you and your doctor. Some of the most fascinating things I”ve read have been presented to me by patients. And your doctor can actually call or email the researcher for more information. For that matter, you can too. I’ve found most scientists are lovely and generous with their time, reprints of articles, and emailed clarifications. They’re thrilled you actually read what they wrote.
- Medical information on Web can help, but self-diagnosis might hurt (triblive.com)
- Caution, Dr Google might misdiagnose! (scienceintelligence.wordpress.com)