Suppression of Data: From Pharma to Health Information Technology

Over on our friends, the Health Care Renewal Blog, Dr. S. Silverstein, known as "MedInformaticsMD," has been doing quite a number on electronic records and health information technology (HIT)--for instance:

http://hcrenewal.blogspot.com/2009/02/are-health-it-designers-testers-and_27.html

Now, this blog is about the pharmaceutical industry and not electronic records, correct? So the reason I am mentioning this is because the same issues seem to be popping up in both places--all suggesting the dangers of the over-commercialization of health care.

Basically, Dr. Silverstein has been beating up on a number of commercial HIT products. He agrees that the electronic record is a great idea, and that the technology exists to make it work very well. The problem is that all too often it does not work well at all. The problem is a manufacturer that assigns a bunch of computer geeks to design the medical record, without working to create a seamless interface bwetween the software and the expert human users who have to practice with it. Result--a hospital can spend millions on a new electronic record only to find they have actually increased patient errors, and driven the staff totally bonkers with a user-unfriendly system that requires you to take 15 minutes to do electronically what you used to do in three seconds with a pen and paper.

What does this have to do with Pharma? Dr. Silverstein's post mentions two issues. First, he has a great deal of difficulty showing illustrations of the actual glitches in the electronic record systems that he is writing about--because the user contracts forbid copying any part of the record display or even talking publicly about any of the problems with the system. In short, the HIT industry is working just as hard as Pharma to suppress any data that show its products in a bad light and that could hurt sales--and patient safety be damned.

Second, Dr. Silverstein found that on complaining about the crappy record systems to industry insiders, and pointing out what research among the physicians and nurses would have allowed the system to be designed properly from the start, he gets the response that there's no business advantage to doing it that way. It is much cheaper for the manufacturer to sell the crappy system to a hospital, then enroll the staff of the hospital as the unconsented-to experimental guinea pigas to spend their valuable time debugging the system at no cost to the manufacturer. The only hope, as noted, is that not too many patients die while the system is being brought up to minimal standards.

This is all very sad because the policy wonks and politicos have bought the propaganda about the wonders of electronic records hook, line and sinker--not surprising, since the electonic record, when well designed at the software-user interface, is truly a thing of beauty. That was the way it was with the first generation of electronic records, which had to be built by the hospital systems as there was no ready-off-the-shelf commercial product, so they had no choice but to design the system from the ground up with full buy-in from the end users. People have failed to note that in the hand-off from the build-it-yourself to the off-the-shelf generation, a lot changed. And one thing that has clearly changed is that big profits are to be made by concealing unpleasant data; and by heavily marketing a bad product instead of taking the time and research to design a good product.