We are all responsible for our own health and health care and for that of our children. Yes, there are healing professionals who are there to help, advise, and perform technical procedures – like surgery – that we can’t do ourselves. But, ultimately, we make our own decisions. We live in the age of information, where we can simply go on the Internet and get access to all the information that professionals have access to. Being armed with accurate information can help us make the best health decisions for ourselves and our families. But the flip side is that being confused by myths and misinformation can be dangerous – sometimes even deadly.
On the Internet and elsewhere, there are rumors, urban legends, and myths that are spread as fact. There are many ideological groups spreading misinformation to promote their particular worldview. There are also plenty of people who are trying to separate you from your money by making false or misleading marketing claims or using hype rather than real information to promote a product.
The best source of reliable information is still health-care professionals. Your physicians are there primarily to advise you. Don’t be afraid to ask questions: When you have a visit with a physician or other health-care professional, come prepared. If you are going to do some research on your own, do it before you go in, and bring your specific questions. Bring a friend or family member, because the more people that are in the room hearing the information, the more you will remember. Also, don’t be shy about seeking second opinions; it’s pretty much par for the course these days.
There are other trusted sources besides health-care professionals. If you are wading through the information on the Internet, stick to trusted sources like known universities – Yale, Harvard, the Mayo Clinic, or Johns Hopkins. There are also many research institutions like the National Institutes of Health, the National Cancer Institute, and the Muscular Dystrophy Association. There are professional organizations for every specialty, like the American Academy of Pediatrics and the American Academy of Neurology. There are also patient or disease advocacy groups like the Multiple Sclerosis Society.
But there are also a lot of posers. Anyone can create a snazzy website and make it seem like they’re an impressive organization.
Separating the Wheat from the Chaff
Therefore, here are some red flags to look out for:
Beware of so-called institutes or organizations that seem to be doing nothing more than promoting a single individual. Beware of sites that seem to be trying to sell you something; they are probably distorting information to make that sale. Also, beware of outliers. If you’re visiting various sites that all seem to have one opinion, but Bob’s Institute of Syndrome X has a completely different opinion, it’s probably Bob’s Institute that you should be wary of. There are also well-meaning but misguided patient and disease-oriented groups. There are groups that honestly want to do what’s best for patients, sufferers, and society, but they don’t have a culture of science.
Finally, there is no substitute for just thinking critically. At the end of the day, you have to think for yourself. Here are some more tips for reading information on the Internet:
(1) If something sounds too good to be true, it probably is. If someone’s promising you the cure for cancer, you should be a little wary of that.
(2) Don’t trust testimonials. They are just anecdotes, and as we say, the plural of anecdote is anecdotes, not data. Sites use testimonials to support their claims because they don’t have the scientific evidence to back them up.
(3) Look for contrary information and opinions. If someone is trying to sell you a product, treatment, or therapy, specifically go out of your way to see what the critics of this are saying.
(4) Finally, is there published, peer-reviewed evidence? That’s the ultimate currency of medical information. Having a peer-reviewed article is not a guarantee that the results will hold up over time or that they’re accurate, but it’s at least a good starting point. To search for this research yourself, go to the website PubMed.org.