Tuesday, August 4, 2009

Stay away from "The 21st Century Ultimate Medical Guide to Behcet's Syndrome"

It's rare that a Behcet's resource has made me this angry (unless you consider my negative amazon.com review of "The Official Patient's Sourcebook on Behcet's Disease: A Revised and Updated Directory for the Internet Age" by Icon Health Publications.)

What do you get for your $25? One CD that's supposedly filled with Behcet's-related information, and a second CD with the company's "Medical Encyclopedia." Let's look at the BD-related CD first. It contains 4 main files:

  1. "Behcet Syndrome": This section is 244 pages long, which sounds great until you take a closer look. Less than 10 of these pages include direct information on Behcet's. Most of the pages are screenshots: lists of links to websites found by searching the government's medlineplus.gov database. And many of the links lead to info for vasculitic diseases that are NOT Behcet's. What's in the other 234 pages of this section? There are 175 pages of screen shots of clinical trial listings, directly pulled from the clinicaltrials.gov database. Only FOUR out of the 38 clinical trials that are listed directly relate to Behcet's. The remainder of the listed clinical trials are for "vasculitis" studies, and these studies weren't screened in advance before being dumped into this document. What else explains including studies where the "Exclusion Criteria" for the study is "Behcet's Disease"?? (i.e., if you have Behcet's, you CAN'T join this clinical trial).

    What's in the other 50 or so pages of this section? More than a few blank screen shots, and screen shots of pages from other U.S. government health-related websites (primarily NINDS).

  2. The second section of this CD is a 75-page "Guide to Leading Medical Websites." Each page is a screen shot of the home pages of different health-related sites: WebMD, MedlinePlus, etc.

  3. The third section is 3405 pages directly pulled from the NIAMS website (the National Institute of Arthritis and Musculoskeletal and Skin Diseases). It includes all of the NIAMS health booklets that are already free to the public online -- including NIAMS' free publication, "Questions and Answers about Behcet's Disease." Go to this link to get it yourself: http://www.niams.nih.gov/Health_Info/Behcets_Disease/default.asp

  4. The fourth section is an unbelievable waste of disc space for people looking for BD info. It's 13,635 pages directly pulled from the NIGMS website (National Institute of General Medical Sciences). Out of morbid curiosity, I did a search on "Behcet's" in this section. No surprise -- Behcet's isn't mentioned on any of the pages.
What about the second CD? (The "Medical Encyclopedia"?)

Once again, there's a whole CD filled with screen shots from government websites: specifically from the National Institutes of Health, the National Cancer Institute, and the Centers for Disease Control and Prevention. I'm not saying that info from these sites isn't valuable (it is), but you can get all of it, for free, by going to these websites yourself.

I'm amazed that PM Medical Health News (who put this CD set together) says that the product is meant for patients, physicians, and nurses. Smart patients will stay away from this CD, and physicians and nurses have absolutely no need for the "Ultimate Medical Guide to Behcet's Syndrome": They already know how to find all of this information on their own.

BTW, I also suggest staying away from this CD's sister product, "The Empowered Patient's Complete Reference: Behcet's Syndrome," which I don't expect to be any better than this one.

One last comment -- I clicked on the "Author" link at the top of amazon.com's listing for this CD set (the author/publisher is PM Medical Health News). It brought me to 950+ very similar CDs created by this publisher, on a huge variety of health issues and diseases. I'm guessing that all of these CDs are almost identical. Like Icon Health Publications, PM Medical Health News has figured out how to capitalize on desperate patients who are looking for information about their rare illnesses.

On the amazon.com site, I gave this CD set one star, but only because "zero" stars wasn't an option.