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What you don't know can hurt you

December 12, 2008
by Joe Bormel
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What you don't know can hurt you



Commercial Secrecy, Scientific Openness, and Public Health






Have you ever asked your doctor whether a symptom you're having may be caused by a drug you're taking? How is your physician supposed to know?




In today's WSJ (12/12/2008), there's a

terrific article by Robert Lee Hotz, "What You Don't Know About a Drug Can Hurt You; Untold Numbers of Clinical-Trial Results Go Unpublished; Those That Are Made Public Can't Always Be Believed."



Seeking A Balance:




"... researchers, federal regulators, pharmaceutical companies and medical journal editors have sought a balance between commercial secrecy, scientific openness and the public health. "




It's important for HCIT executives to be conversant in major underpinnings if we are to help bring adequate information to clinicians and consumers (including ourselves and families). As Hotz suggests, there are strong economic drivers of what some would call "disinformation campaigns."




There are legitimate scientific certainty challenges in making valid causal claims between, for example, taking a drug and getting a side effect. And, by the way, we're not just talking about side effects like rashes, nausea and headaches. We're talking about trouble thinking (including dementia), suicidal thinking, profound muscle weakness, and of course, heart attacks and strokes. Very non-trivial side effects. Remember Vioxx?




These kinds of side-effects are an extremely personal issue for a lot of people I know, who have stopped taking a highly recommended drug and saw the side-effects disappear. They then heard the same story from a handful of friends about the same drug. It's not just one specific drug these people cite, although some drugs are much more frequently mentioned.




I have some specific insights, as well as links to some fabulous, reasonably short, recent thought leadership that I can share, from highly credible sources. It's not clear whether the readership of this blog has an appetite for this. Please comment or send me an email if you'd like to encourage a dialogue.






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Comments

"... I am probably more bold about stating the concerns because I experienced my side effects more than ten years ago. I've been delving into the articles, including two in-person meetings with a medical expert in these side effects, and driving my cardiologist colleagues crazy since that time (eg, pointing out that they do not provide informed consent to patients for whom they propose the treatment and also pointing out that the primary motivation for prescribing them to everyone is fear of malpractice). I continue to predict that eventually an effective study of side effects will lead to a major recall that will make the Vioxx explosion look like a puff of smoke. ..."

Joe Bormel

Healthcare IT Consutant

Joe Bormel

@jbormel

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