They do it because they read it on the Internet. I'm talking about the latest trends in medical advice or "therapy" that people learn online.
Take chewing and spitting, the latest trend in eating disorders, in which a person puts food in his or her mouth, tastes it, chews it and then spits it out without swallowing. The idea is to get the benefit of taste while keeping the waistline slim. However repugnant, the practice seems pretty benign. I'm guessing that many people have eaten a piece of some something or other and discretely spit the food into a napkin. In fact, if you listen to some posters in the crowd (i.e. those weighing in their opinions on my blog), chewing and spitting is a perfectly viable option to fit into your wedding dress.
But is it? Better yet, is it a smart idea to trust the masses when dealing with your health? In other words, how effective is crowdsourcing at increasing our medical knowledge, especially when the medical studies are lacking?
I am molecular biologist by training and therefore my bias is toward rigorous science. I recognize the benefit of the gatekeepers such as physicians, medical institutions and even editors and science journalists, who cover these beats long enough to know fact from fiction. But I also understand that the Internet has laid off the gatekeepers, in some cases, to our benefit.
Let's look at a couple examples:
-- A friend of mine told me about his diagnosis: an obscure condition called, Benign Paroxysmal Positional Vertigo, marked by dizziness due to debris in the inner ear. His physician had heard of it heard of it and actually administered to my friend a strange head-banging technique that treated the problem. But my friend wanted to know more. So he went on the Internet and learned some helpful advice: Don't stand on your tiptoes, tilt your head back and reach up to the shelf. My friend tried it, just to see what would happen, and, sure enough, the resulting dizziness, the so-called "top shelf vertigo," knocked him over. Because his doctor did not know this detail, it becomes part of a story in which folklore can be just as important as medical studies in terms of ensuring quality of life.
-- In another case study, people are debating whether or not selective serotonin reuptake inhibitors (SSRI's) cause uncontrollable weight gain. Some physicians swear the drugs do. Others swear they don't--or even better, that SSRI's can help people lose weight. Still other experts say it depends on the kind of SSRI and the person taking it. If you read the banter from SSRI-takers themselves, you'll find the majority of posters are people who have gained weight while taking the drugs --and are really upset about it. In this variation on crowdsourcing, you're not getting collective wisdom, but rather the "skewed collective wisdom." In science, we would say that the sample is not representative. And, as a corollary, if you follow the advice, your decision could be dead wrong - and maybe dangerous.
-- Speaking of danger, the lack of informed oversight in editorializing can put your health in jeopardy. Take chewing and spitting. As people post about this secretive practice, they open a Pandora's Box. There are testimonials from people whose lives are devastated from the practice--i.e. a 23-year-old, who corroded her teeth so badly, she now has dentures. There are the advocates who say that, while chewing and spitting may be gross, all diets are gross, and chewing and spitting works. Yet another group of posters are those coming out of the closet and finding each other.
"OMG!!! i also thought i made this up! i cant believe how many people are doing it. Ive been c/s ing for more than 10 years..."
There's even a bit of trivia. One poster noted that a world light heavyweight champion, Archie Moore, admitted to chewing and spitting out meat in order to maintain his nutritional input, while making weight.
While the collective information flows undammed, and we might call that a "good thing," what's missing from the outflow is the omniscient voice: the one that weighs in with a clear, "do this or that because there's really good evidence." In the case of chewing and spitting, at least one expert has posted as to the potential medical consequences. But we're still missing definitive published, peer-reviewed medical studies. This is a case where the wisdom of the crowd precedes the medical consensus.
What do we do?
Some say, use common sense. It is a fact that, when we chew, the stomach secretes acid. If there is no food to absorb the acid, the risk of an ulcer increases. Thus, the prudent answer seems to be, don't chew and spit and wait for the medical jury to weigh in. But you may be a risk-taking person. So the answer is really up to you.
It's not that we should -- or could - stop people from crowdsourcing health and medical information. The genie's already out of the bottle. According to a study posted by the reputable Pew Internet and American Life Project, eight in ten Internet users have looked for health information online.
So, rather than discontinuing Googling for Heath, it might be better to do so smarter. Here are some questions to consider before making any decisions:
1. Are there any sound studies or reputable institutions backing up the claims?
2. What does your doctor say?
3. Could the advice hurt you?
4. What could you lose if you try it?
These are just a start. There's way more to come. Crowdsourcing is a wild new frontier with all kinds of issues and implications upon our health. What crowdsourcing really boils down to is ...dare I say... the source. Posters have an agenda. It is important to realize what that is. He or she could be someone who:
•is contemplating making a medical or quasi-medical decision.
•has already made such a decision to dire consequences.
• is a person who derives their identity from a particular condition.
•is an expert touting his or her own new treatment.
•is just trolling the Internet for entertainment.
Bear that mind. As you hunt and gather knowledge, remember that not all information is good information. Or good for you.
Follow Trisha Gura on Twitter: www.twitter.com/SciWriterPhD