Parade should have asked e-patients

Aside from debunking a crummy column, this is a call to action for journalists.

Today Parade featured a column that appears to be pure flackery. If the editors had done a reality check with a patient community they would have been much better informed, with little extra effort on their part.

Titled You Can Survive Cancer (I Did), the column is by Mark Liponis MD, who had a cancerous kidney removed and now runs a chain of spas. (Why this is featured under the heading “Men’s Health” is beyond me, but let’s not focus on that for now.)

The column doesn’t even touch on the nasty realities of kidney cancer: few effective treatments are available, many patients don’t qualify for the most effective treatment, and even among those who do, only one in five responds to the treatment. (I was one of those lucky few.)

On top of that, “I survived, so you can” is absurd logic for an MD to assert, and cruel to people confronted with a condition that has already in many cases turned their lives upside down. It implies that you wouldn’t be dying if you’d done what he did.

Reaction among e-patients on the ACOR kidney cancer listserv has been strong. Members are insulted by the insinuation that all you have to do is eat superfoods, exercise etc (which are, astonishingly, what Liponis’s chain of spas recommends), and if you get cancer, just get it chopped out as he did, and you’ll be fine.

Here’s part of a note I posted to that list.

This is an opportunity to wake up the medical world (at least a corner of it) and some media people about the need to check with patient communities. …

[Name redacted], I think you’re right – Liponis’s book was published last September, so this looks like more publicity. The Amazon page about his book shows that he’s in every possible promotional channel: several blogs, two web sites, Rachael Ray… his site lists many other TV appearances, and says he’s been doing the spa/nutrition thing for twelve years. …

A major point here, in my view, is that the world needs to see the importance of listening to e-savvy patients like the members of this list. Whenever a publication wants to run something about a cancer (especially if the lead came from a PR flack), they ought to instantly know they can fact-check by coming here.

Journalists, please do what you can to fact-check anything medical – with patients, not just doctors. Sometimes doctors are just flacking. Flacking is flacking, but masquerading as medical advice is not good.

As I’m fond of saying, the best peer-reviewed source is often the patient’s peers.

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Comments

4 Responses to “Parade should have asked e-patients”

  1. Susannah Fox says:

    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.

  2. Kenneth Youner MD says:

    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.

  3. 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

  4. 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?

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