Parade should have asked e-patientsComments on: --

By: Gilles Frydman

Gilles Frydman — Tue, 17 Jun 2008 15:09:54 +0000

One of the subscribers to the ACOR KIDNEY-ONC eCommunity let us know that Mark Liponis MD responded to every comment made on the parade site.

I couldn’t have imagined a better example of why we must always remember Susannah’s note about “caveat lector” and I would add “caveat patiens”.

Here is a part of one of Dr. Liponis’ responses: “While a healthy lifestyle can’t prevent all cancers it can certainly prevent most of them.” This is patently in contradiction with what is known about the multivariate causes of cancer and the particular importance of the genetic component. How can a doctor with a national audience write such non-sensical and utterly unscientific remarks?

By: Gilles Frydman

Gilles Frydman — Mon, 16 Jun 2008 16:05:31 +0000

Dear Ken,

One of the main reasons for creating ACOR was to make sure that laypeople were no longer subjected to medical information written for 4th graders. That was 15 years ago!

Seeing an article written by an MD in 2008 with an health literacy level of a 1st grader is very painful and IMO completely unacceptable. We shouldn’t accept the Status Quo Ante. With the vast majority of the US and Canadian population connected with broadband internet connection there is no more justification for presenting “medical” information in this manner.

Incidentally, I just wrote an article (published this morning) that directly relates to this issue:
Participatory Medicine: an End to Rational Ignorance in Medicine

By: Kenneth Youner MD

Kenneth Youner MD — Mon, 16 Jun 2008 15:58:29 +0000

I am an MD and a stage 4 renal cancer patient. I have posted my thought on the article to the ACOR kidney cancer site. They are as follow:
I have read all of the comments on the Parade article that were in the the June 15 email. I had a different reaction to the article. FIrst I want to say that I am not trying to defend another MD. However I did not have such a negative reaction. Yes the article is clearly self serving. I doubt that he would have written the article if he was not trying to push his “health style approach”. Yes he was very luck-to have found a lesion early enough to have a potential surgical cure-hopefully he is still doing the mundane things like getting CT scans. Yes his misconception #5 makes what many if not most of us go through (myself included with stage 4 disease) seem a minor part of our treatment. However I do agree with the parts of his article that say that there are other things that we can do for ourselves that may help (I believe do help) us have a better quality of life, withstand the various treatments we get, and perhaps increase out chance of responding to treatment. Many of you know that I am a very active person. I have been through a radical nephrectomy, thoracotomy (chest surgery for metastatic disease) and a clinical trial with HDIL2 and Avastin. I know that I am very fortunate, so far, in that I am still able to ski, hike, and do long distance bilking. However I do feel strongly that my last 35 years of activity have helped me continue to be fully active and I think will help me have a better quality of life, even as I contemplate further treatment. I also think that the recommendations in the keys to cancer prevention are very good. He also mentions that cancer can be present with little or no symptoms (as mine was) and that cancer can affect young healthy people.
I think that we should realize that this article is for the general public (most of whom are “in the dark” when it comes to diagnosing cancer) , not for well informed people like us. Most people would be helped if they would follow some of these recommendations. There is no question that a well informed patent is his/her best advocate. This article does go in that direction. Is it self serving- yes, does he make light of what we go through- yes, but I think that it may be useful for some people.

By: Susannah Fox

Susannah Fox — Mon, 16 Jun 2008 13:51:13 +0000

Thanks, Dave. This post touches on some issues that Gilles brought up by linking to an evaluation of 500 medical stories and that I brought up in a critique of CNN's Empowered Patient column. It's not just medicine that suffers from journalism's shortcuts and gloss-over treatments. I've seen inaccuracies in how reporters cover surveys despite clear statements and definitions from the Association of Public Opinion Researchers. I guess the lesson is caveat lector.