So you’ve just been diagnosed with rheumatoid arthritis. Or your husband was given a prescription for a new diabetes medication. Maybe your daughter is scheduled for something called an “Upper GI” study. What’s the first thing that you do?
You run to the internet.
Now, don’t get me wrong. For those of us old enough to remember life before the World Wide Web, the internet is an unimaginable blessing. Finding the cheapest flights. Reading reviews for restaurants. Exploring exotic destinations. Buying, well, anything. But when it comes to seeking critical information and guidance regarding your health and healthcare, and the health and healthcare of those you love, the internet is nothing short of a minefield.
For example, one of the world’s leading reference sites, Wikipedia, is used by millions of patients (and thousands of healthcare providers) as a source of medical information. However, a widely reported 2014 study found that a thorough medical review of Wikipedia’s content for some of the most common major medical conditions (including coronary artery disease, lung cancer, depression, high blood pressure, diabetes, and COPD) revealed that for nine of ten conditions reviewed (yes, 90%), Wikipedia’s medical information was grossly inaccurate when compared against accepted scientific studies and medical practice guidelines.
A founding principle of today’s healthcare reform revolution is for physicians, nurses, and other care providers to make care decisions based on evidence-based medicine. That is, whether or not you should undergo a CT scan, your father should have his mole removed, or your niece needs a new medication, a founding tenet of the ACA (“ObamaCare”) is a push towards consistent, high quality, sound care delivery recommendations founded in scientifically proven (or strongly believed) information.
Unfortunately, when it comes to offering insight on health and healthcare questions, the internet does not uniformly offer evidence-based medical advice. In fact, many argue that the power of the internet is that anyone can claim expertise on anything and put their “expertise” out on the web for all to view. Thus it’s not surprising to learn that Elvis is not only still alive, but that The King works undercover for the Drug Enforcement Agency. And when it comes to information and guidance regarding cancer, heart disease, prostate conditions, arthritis…in fact, regarding just about every known medical condition, there are Elvis-sightings all over the web. (For example, numerous sites claim “natural” treatments cure cancer, and should be used in lieu of traditional Western medical approaches.) Of course the majority of these websites offer their “miraculous” treatments for a small (or large) fee, which you can conveniently and instantaneously pay on-line using your credit card.
Even searching on a credible website can be a real problem. Why? Because just like when you’re trying to pick out paint for your bedroom, you don’t just choose “blue.” No, there are dozens of shades of “blue” (each with a bizarre name). The same is true for diseases and conditions. You don’t just have “thyroid cancer.” You may have papillary thyroid cancer. Or follicular. Or medullary. Or anaplastic. And each of these four types of thyroid cancer has its own multi-stage classification system. Your prognosis (likelihood of cure, likelihood of survival) is specifically dependent on the type and stage of thyroid cancer you harbor. And even more specific to you are factors such as your underlying health (other conditions you may suffer) and health-related behaviors (smoking, diet, etc.). Thus simply reading even a credible website on “thyroid cancer” may falsely lead you to conclude that you need chemotherapy, will no doubt be cured, don’t have a chance at survival, or some other inaccuracy.
But to avoid the internet altogether when trying to better understand your health and healthcare options is truly “throwing the baby out with the bathwater.” By following a few basic guidelines, you can dramatically increase the credibility of an internet search and empower yourself to own your health.
1. First learn the basics of the condition specific to you. How severe is your liver cirrhosis? What stage and type is your stomach cancer? What is the cause of your heart failure? You won’t likely need to know more than a few specifics, and you are bright enough to understand what those mean. And where do you get this information? From your physician partner. Ask what specifics you need to know in order to learn more about your condition on your own.
2. Websites that make claims that seem too good to be true are too good to be true.
3. Be extremely suspicious of websites that drive you toward a purchase of their product. And just because a webpage is labeled “Patient Testimonials” doesn’t mean these “patients” are real or that their miraculous tales are true.
4. Credible health information websites come from a few organizational source types. Not-for-profit, name brand organizations which focus on specific conditions, such as the American Cancer Society, Susan G. Komen Foundation (breast cancer), American Heart Association, and the American Diabetes Association, offer both broad and deep knowledge and guidance on one disease or a group of related diseases. Their information is usually current, is evidence-based, and is offered in a format understandable to the non-clinician. In addition, many of these sites have links to other credible websites. There are also very helpful sites that are not condition specific which are provided by highly credible medical institutions. These renowned centers, such as the Mayo Clinic, Memorial Sloan Kettering Cancer Center, The Johns Hopkins Hospital, Stanford University Medical Center, and dozens of others, allow you to search for information based on virtually any disease or condition. With healthcare reform, even today’s smaller, lesser known health systems (and even individual hospitals) frequently offer current, credible, evidence-based information to their patients and communities, so consider searching for knowledge from local healthcare sites. Finally, the government provides enormous amounts of legitimate medical and healthcare information from organizations such as the Centers for Disease Control and Prevention (CDC), the National Cancer Institute, and the World Health Organization.
These are but just a few examples of hundreds of credible websites which deliver current, evidence-based content to the general public. Oh yeah…there is one other limited group of credible healthcare websites…blogs like this one on a recognized, reliable site, where healthcare experts (with provided credentials) offer valid advice and information and ask for nothing in return. How do you know that this blog and website are credible? Elvis said so.