Good Vs. Bad Information On the Web
There’s no doubt that the internet provides excellent educational resources for patients who are newly diagnosed with various medical conditions. The challenge, of course, is sorting the good, high quality information with the bad. There are, sadly, thousands of scammers just waiting to take advantage of patients in pain and seeking quick relief. Your first line of defense is to gather information from reliable, credible sources when using the web.
The most credible websites dedicated to interstitial cystitis and chronic pelvic pain are:
- The IC Network website – Rated #1 for credibility by the University of London (2013), and #2 by Harvard Medical Center (2011)!
- Medscape – Rated #1 by Harvard Medical Center (2011). This site is primarily for physicians, offering a variety of articles and CME opportunities
- The IC Association – Rated #2 for credibility by the University of London (2013)
- NIDDK IC Website – a simple, straightforward explanation of IC
- Wikipedia on IC – a more cutting edge, current review of IC/BPS.
The worst website you can visit for your IC information are:
- Facebook contains dozens of small, inconsistent IC support groups run by patients who have great intentions but, unfortunately, aren’t grounded in facts and good knowledge. In fact, we call Facebook the “wild wild west” of the IC movement because so much misinformation is presented and, worse, arguments and bullying occurs. We do NOT suggest that patients use Facebook for their IC information.
How to Rate Info on the Web!
Here’s a good rating system that you can use to verify the quality of the information you are reading and, more importantly, perhaps relying on to make your medical decisions. Source: Agency for Health Care Policy and Research
Score of A to A- (Most Reliable): Statements are supported by one or more randomized controlled clinical trials, ideally at multiple locations and published in a peer reviewed journal.
Score of B to B-: Statements are supported by a well-designed and controlled research studies, ideally published in a peer reviewed journal
Score of C to C-: Statements are supported by less valid research studies, such as comparative, correlational or case studies or the opinion of a single experienced expert, such as a physician.
Score of D: An unbiased testimonial that reflects the pros AND cons of any particular approach.
Score of F (Least Reliable): Statements consist of anecdotal information, biased testimonials from patients or manufacturers, back-of-the-magazine paid stories, ads and TV infomercials. The vast majority of websites and several patient written books are “F’s.”
It’s important to focus on information that is supported by strong, credible research. If a company has NOT paid out the money to do a study that proves their claim, we suggest you be skeptical. If a website that proclaims a cure is not listing research supporting their claim, be incredulous. If someone says that they can cure IC, ask for proof… hard, written (usually in a medical journal), factual proof.
- Jenny had IC for a few years and was struggling with pain. A friend suggested that she visit a chiropractor who could miraculously “treat any medical condition.” She said “yes,” drove 90 miles, had an examination by someone completely inexperienced in IC that triggered even more bladder pain and then bought hundreds of dollars of useless herbs and vitamins.
- Brian spent $29 buying a book online that said it would share the “cure” IC. After purchasing the book and reading it, he felt scammed. It blamed IC on salt, offered a simple low salt diet that he could have printed, for free, from many websites. It also offered no credible proof or research studies that showed that salt caused IC or that a low salt diet could “cure” IC. Yes, salt on a wound hurts. Reducing salt makes sense. But it’s not a cure.
- Mary heard about an acupuncturist who could “heal” her IC. She spent more than a thousand dollars for phone consultations and herbs and experienced no improvement.
- Nancy was told by a doctor in Colorado that the only treatment for IC was a surgical procedure. She paid thousands of dollars for a medical device to be implanted (i.e. Interstim) that was not FDA approved for IC and suffered from serious surgical complications. When she went to another urologist to discuss her complications, she learned that there were other less expensive and less traumatic treatments that she could have tried that she was not told about.
Were these wise decisions? Of course not. Each patient forgot to be skeptical and to gather information from multiple sources, especially about potential “cures.”