Crowdsourcing is the hot new trend in health web sites. They offer an intriguing, sometimes insightful look into patients’ actual experiences with a particular drug or disease.
Too little is known about the side effects of any drug before it hits the mass market, and woefully few drugs are studied for long-term effects. By sharing their experiences regarding the medications they take on these crowdsourcing websites, consumers can potentially help bring to light more rapidly a drug’s potential adverse events.
But user beware, none of the sites listed below attempt any verification that the people behind the rankings and comments have actually used the drug and have not checked if the patient used medicine correctly, or used it simultaneously with another medicine creating an unanticipated drug interaction effect.
All of the sites I perused have thousands, if not millions, of patient responses. The best have organized the info into useful factoids. Others spill raw data onto the screen in a dismaying barrage of numbers. Some pull excellent quotes and other seem to allow random rants. No site was perfect. Here’s a rundown of sites we know of with our comments. They are presented in order of most visited (as of publicly available stats October 2015):
Treato is the only of the 4 sites reviewed that doesn’t allow users to add comments. Treato.com’s software program (algorithm) roams the Internet and picks up discussions about medicines and conditions. It lists lots and lots of comments culled from “social media,” presumably Twitter and Facebook. The program aggregates the information (which protects the privacy of individuals), determines which comments are positive or negative and creates scores based on that analysis. With the many misspellings and questions asked in the comments displayed, I wonder how the programs determines which comments are positive and which are negative. The site doesn’t describe medical issues or explain how or why drugs work.
Pro: The sheer volume of chatter that the Treato picks up suggests the results aren’t manipulated and that the major side effects will float to the top. Treato claims to have combed through more than 2.2 billion comments (as of August 2015).
Cons: Many unusual side effects are mentioned in the comments. The comments are not vetted, so they might be accurate or they might be garbage. The site of origin for the comment is listed, but a visitor to Treato.com can comment. Where does that comment go?
Cool thing: It suggests other drugs to compare it to. For example, when I typed in Singulair, the right hand sidebar offered links to comparisons such as: Singulair vs. prednisone, Singulair vs. Advair.
Pharmaceutical Independence: Treato sells the information to pharmaceutical companies. Treato will also seek out information on a specific drug or track discussions about a new drug under contract to pharma companies. No advertising on the website, but every time I was on the site occasional pop ups appeared asking if I like my health insurance.