MS Patient, Ph.D.: The Doctors of Oz
Misinformation about diseases and treatments is easier to find in the age of the internet and harder to combat
Doing a quick online search on multiple sclerosis (MS), I made some interesting discoveries. Did you know that there’s a natural MS treatment that can cure any type of MS in weeks? Or that the cause of MS is actually known, published in a book (that you can purchase for $31.97), and related to aspartame?
Don’t worry, readers, I know not to believe these claims and realize that they are just snake oil sold under a pretense of helping you out. This is just a sample of the more blatant false promises for quick fixes and the type of misinformation available on the internet today. Of course not all information on the internet is bad (this website, for example), but it’s all equally accessible and just a Google search away.
There are many nooks and crannies on the internet where misinformation spreads like wildfire. So, whose responsibility is it to correct this misinformation, since it’s basically impossible to police the internet, especially in places where the writers and sources aren’t made explicit? Last week the FDA came out with policies about how pharmaceutical companies can respond using social media and general internet communications if they see their product being misrepresented. But many criticize the FDA for their slow realization of this problem. Additionally, if pharmaceutical companies respond incorrectly to misrepresentations, they could come under attack by the FDA. So unless something particularly egregious is said about a product, it’s doubtful that a pharmaceutical company would take on the risk.
Given that one-third of adults in the U.S. go online to find information about a medical condition, according to the Pew internet research poll Health Online 2013, the type of information that is available online matters. Many times it’s not just a static site but actual peer-to-peer interactions that are sought out. There are numerous forums, Facebook groups, and websites where patients share their experiences and their interpretation of medical information with other patients, especially those that have been diagnosed with a specific disease.
I think part of the need for turning to the internet, or to peers specifically, for answers and support is that a peer will understand and have the time for you to describe every little problem. In contrast, doctors have only a precious few minutes to answer a patient’s questions, and even with enough time patients often don’t regard doctors as approachable enough to answer what may seem like stupid questions. To a peer who knows exactly what you’re going through, the questions never seem stupid and there’s always someone who is willing to give advice or share their own experience with something similar.
The need for turning to social media for support and advice might be especially prevalent in the MS community, where the variability of the disease manifestation from patient to patient stops some doctors from giving too much advice because there are still so many unknowns in MS or due to fear of setting unrealistic expectations for side effects or recovery. But nature abhors a vacuum. So when patients don’t have enough information, they seek out answers elsewhere, which can lead to misinformation.
Of course, it's not just patients that go online; doctors do so too. Surprisingly, Wikipedia is one of their first sources online for medical information regarding specific diseases. This is not very comforting to a patient looking to doctors for their knowledge through education and experience (not just what some random person on the internet decided to write on the highly editable website). Luckily for me, multiple sclerosis ranks as one of the top five searches on Wikipedia and is also one of the few featured articles—one of the best that Wikipedia has to offer. Let’s hope that more medical students (or even researchers or clinicians like you) are encouraged to edit and improve Wikipedia articles about diseases via the WikiProject Medicine like those at UCSF, so that when my neurologist who doesn’t specialize in MS looks to Wikipedia for answers to my questions, he will at least have an accurate answer.
The cost of this misinformation can vary greatly. There can be no cost at all, just ignorance about the facts. But misinformation can also do great harm, if people take the wrong medicine or avoid treatments because of false hopes in some miracle cure (like natural remedies or dietary changes, which are highly prevalent) and don’t get better.
Of course, it’s not just the internet that can do harm. For decades, more traditional media, like television, have influenced patients too. Which brings to mind the efforts of the Senate Commerce, Science, and Transportation Committee during last week’s hearing for consumer protection against advertisements for misleading weight-loss supplements. (For a good article on this, head to The Atlantic.)
You may have heard that Dr. Mehmet Oz, a cardiothoracic surgeon and host of The Dr. Oz Show on television, was questioned by the committee. (Jon Oliver has good coverage of this.) Although he’s not the only person promoting weight-loss supplements, Dr. Oz’s recommendations definitely carry more weight than those of other TV personalities without a medical degree. Theoretically, it’s really great to have an eloquent doctor talk to people about health issues, unless they make statements supporting supplements that have not been tested rigorously or give advice that isn’t supported by the medical community. He’s just the tip of the iceberg and someone you can actually slap on the hand. But as a licensed medical professional, he should be held to a higher standard.
So whose responsibility is it to help correct misinformation and educate patients?
Firstly, patients should try their best to find accurate sources of information and, when possible, search out the primary literature. However, even if a patient wants to be informed, most published research articles are behind a pay wall. Having access to the primary literature isn’t entirely helpful either if you can’t understand or interpret the findings—usually written with lots of jargon or whose conclusions can’t necessarily be applied directly to individual patients. Therefore, clinicians are an important part of the equation; they have the knowledge and experience from treating many patients who have MS. They should proactively join the conversation and correct misinformation when they see it. Finally, there’s a role for the MS researcher too. Oftentimes I’m sure researchers don’t feel comfortable correcting misinformation online or giving medical advice, because they’re not clinicians. I think we can all do our part to direct patients to good sources of medical information and guide them to become well-informed self-advocates. I think the readers of this forum in particular are supportive of keeping fresh on the latest research, and we shouldn’t be afraid of having patients do the same and help them understand the reasons for the medical decisions.