Web Informant #385, 8 September 2004: Finding Web-friendly docs




Ever since I began researching my own medical problems over the Internet in the mid 1990s, I have always considered the Internet a friend of the smart consumer who is interested in learning more about his or her treatment options. But lately, I am not so sure, especially when the events of the past couple of weeks are considered.


Two recent items curiously involve the conglomerate GlaxoSmithKline. Last Monday, the company took out a large advertisement in the Times (and perhaps other papers) promoting its role in making "safer" meds. The ad was based on Senate hearing testimony and described the rather tortured process by which investigators from the Food and Drug Administration tried to track down discount drugs that they ordered over a Web site. The site claimed to sell cheaper prescription drugs from Canada, but the servers were located in China. When the drugs arrived, they had a postmark from Dallas and a return address label from Miami. When the FDA investigators called the company, initially they were told that the company was located in the United States, but on a second call were told Belize. Then they called the credit card company and found out the vendor was paid to an account in St. Kitts. As the FDA investigators stated in their congressional testimony, "It's obviously not a legitimate business selling legitimate drugs." You can read the entire testimony transcript of the hearing at this location (go to p. 18 for the narrative of this particular tale):



Also during this hearing, our Senators heard from a parent whose 24-year old son died from taking various medications he received over the Internet (p. 72 of the transcript), and other horror stories. And as the number of spam messages offering cheaper meds continue to fill our inboxes with even more come-on offers, clearly something is wrong here.


Sure, the Internet is a great place to research your treatment. Or, for the hypochondriacs, your symptoms. But separating the signal from the noise is getting harder, and the more information that gets posted on various Web sites makes the process of finding quality information more difficult. I have found that joining several discussion groups works best for me: While the people in the group aren't all doctors, they can give you plenty of advice and places to look, as well as the right questions to ask your own doctor. And, given that this is the Internet, members of one of my groups have even invented this acronym: IANADADPOOTV (I am not a doctor and don't play one on TV). Meaning, your mileage will vary, so watch your back.


But as I said, the more stuff out there, the more noise. Glaxo also last week announced that they are posting all of their clinical drug trials on the Web and have started with posting the results of one series of diabetes-oriented trials.



Initially, I thought this was a Good Thing. Now I am not so sure. Try plowing through all the trials listed on the site now, and it gets tedious pretty fast. The data isn't searchable and even a professional clinician would need help navigating through all this data. And this is just for one drug! Other companies have joined in and are posting their own trials and the federal government and a drug makers' trade association also have sites to keep track of some trials too. Posting all this data is going to quickly get out of hand.


The trouble with these clinical trial sites is that you either don't trust them (what if the company only posts the favorable trials?) or can't grok them because the information isn't presented in a form that you can easily parse. For example, the Glaxo clinical trial data needs a better presentation and filtering system, so that laypeople and professionals alike can see which trials are pro and which are con.


We need a filter here, which is what your friendly physician is supposed to do. And while some docs are Web-friendly, this isn't something that they have learned in medical school or even in clinical practice. The best situation is when you can find a doctor who will take queries from their patients via email. This has become standard practice for me whenever I am trying to vet a new specialist, but again, is far from universal. And of course you don't necessarily want to have your doctor do email diagnosis.


We are all still feeling our way with the medical Web. Doctors still need to be more comfortable with using email, patients need better ways to access state-of-the-art treatment information and background sources, and drug companies need to build a better trust with both their consumers and their dispensers. In the meantime, be sure to take your medical info from the Internet with a few grains of skepticism. And do not call me in the morning.


Entire contents copyright 2004 by David Strom, Inc.

David Strom, dstrom@cmp.com, +1 (516) 562-7151

Port Washington NY 11050

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