This is the number one question I get, right after “why are you so skinny if you eat 85% of your calories from fat?” (that answer is a different post altogether). The question is – “how do you know if something you read online is credible?”
This is not a trivial problem, particularly if the advice you’re thinking about following may cost you your life. And no, I don’t think that’s overly dramatic.
Let me give you an example, a hypothetical and indulgent, tongue-in-cheek bit of silliness though it may be. Let’s say I choose to ignore the advice of my mechanic and I stop putting oil in my car, because I read online that engine oil is the product of an evil cartel. This so-called “oil cartel” is really just a gang of old guys who want to enslave us to their oily magic, increase their own personal wealth, and grow fat off the proceeds of the zombie movies they make as a sideline. What proof is there of this? Why, I can show you a handy graph illustrating how both cars requiring engine oil and the popularity of zombie movies have increased, in lockstep, since the early 1900’s. Rather than engine oil, based on the advice of my new online friends, I’ve decided to pour water, which is free, into my car, as I am assured it works just as well. That stuff is just supposed to lubricate and cool my engine, anyway. What could do that better than water, I ask you?
This may cost me my car. Just as deciding to follow advice online about whether or not to accept proven treatment, or whether to replace it with an alternative, could cost me my life. But the really thorny issue is that I actually do believe that there is information available online that can help me make responsible and educated healthcare choices. I believe that there is research out there that I can find, read about, understand, and act on, that I may not hear about from my specialist. I believe that I am faced with a healthcare system that is often fragmented, where the surgeon is expert in surgery, and the chemical oncologist unquestionable in her authority on the topic of chemotherapy, but sometimes they don’t talk to one another, and neither of them is responsible to discuss my daily nutrition choices, and I’m just overwhelmed and I won’t be back to see my GP for a year. I also believe that if I want the right to participate in setting out my health plan, I also have the responsibility to make sure I’m making educated choices.
It’s reasonable to expect that people will turn to the internet for answers. But how does one judge what is credible information once you step into the vast sea of blogs, wikis, tweets, Facebook groups and advertisements out there? Yes, advertisements. Because to add to the confusion, everyone seems to be selling something, especially targeting desperate and frightened people who have been diagnosed with something scary.
Below are two steps that I think can work when you’re not a research or medical professional and you’re trying to assess validity of a health study or treatment you’ve read or heard about. Passing these tests does not guarantee what you’re looking at is going to work, but they can help you screen out a lot of bunk.
Check the Source
Be a detective. Do a background check on both the author and the publication. With respect to the author – where does he or she work, what are their credentials, is this a case of the plumber advising you on how to wire the electricity in your house? In other words, is this person writing about something they are trained or expert in? Are they a researcher or doctor at a recognized medical or academic institution? Not foolproof, but the likelihood that the information is plausible increases if the author is trained in the area and works for or with credible real establishments. With regard to the publication or source of the information, look for references to real peer reviewed scientific journals. How do you know if a journal is “real”? You can search for the journal title on PubMed, a service of the US National Library of Medicine that provides free access to a database of indexed citations and abstracts to medical, nursing, dental, veterinary, health care, and preclinical sciences journal articles. Here’s another nice list of how to tell whether a journal is legit, from Columbia University, which also touches on how to judge whether an “open access” journal is for real. Awhile back, I shared a piece about how to read and understand a scientific research paper, which can be of help too.
Current Clinical Trials
Check out whether there are any current clinical trials on the topic you’re researching. Again, even if you don’t understand the trial designs or details, this can give you a sense of whether there is real research going on in this area. The best place for this search is ClinicalTrials.gov. This is a free online database of approved and recruiting clinical trials, and is a service of the US National Institutes of Health. This is my answer to the dilemma where people worry that there may be legit research going on that their own doctors are unaware of. This is a simple test. Just search for the topic you’re interested in. If there are a number of trials ongoing, you can at least conclude that research dollars are funding this area, and institutional or ethics review boards have approved trials to proceed. This doesn’t mean they’ll be successful or that everyone working on them is free of bias, but it can give you a “bunk-sense”. For example, if I search ClinicalTrials.gov today for “ketogenic + cancer”, I see 15 studies returned. Ten are currently recruiting, two are completed and one is listed as terminated (and focused on Tourrette Syndrome). Two have unknown status. I can click on each study and see who is conducting it; if I’m really feeling industrious, I can go back to step one, above, and do some background checks on the study leaders and institutes. By contrast, if I search for “coffee enema + cancer”, I find one study with a status listed as “terminated” that looked at enzyme therapy with nutritional support compared to chemotherapy in the treatment of inoperable pancreatic cancer. There is no study lead listed, but it does say the study was a collaboration between Columbia University and the National Center for Complementary and Integrative Health, so I might be able to search for any publications that could have come out of this study.
These two steps alone can take quite a bit of time, I understand. But they’re worth pursuing if you’re making decisions about how or whether to complement your current treatment with other interventions, or if you’re thinking about replacing standard of care treatment with an alternative. I think we all have the right to make informed decisions, and that our doctors don’t always know everything, and we can’t expect them to. But there are unfortunately also people out there trying to take advantage of frightened people, which is downright wrong.
Finally, here are three things I think all suspect information has in common, so watch for these and take caution if they are all present: a secret magic bullet promise, a conspiracy theory, and a sales pitch. Just my three cents!