The Online Health Forum: Debatable Value? Not to Us.

PJ Hamel Health Guide
  • Googling bad for your health? Docs debate online health forums.

    This headline, appearing today on USA Today’s online Your Life page, caught my eye. The paper picked up and reprinted a column written by Steve Wood of the (Cherry Hill, N.J.) Courier-Post.

    Curious, I read the column. And was shocked, once again, by the out-of-touch feedback given by one of the doctors Mr. Wood interviewed.

    Dr. Bonnie Levin, a New Jersey family practitioner, told Wood she “advocates support groups, though ‘not from the computer.’ ”

    Wood quotes Levin as saying, “I won’t recommend that. I say you need one-on-one (counseling). If someone is going to get some counseling on how they’ll deal with their illness, they’re not going to get that from the computer.”

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    Levin continued, “It’s not something I would recommend to my patient if they’ve been diagnosed with lung cancer. Go on the computer and talk to someone with lung cancer? You just don’t do that.”

    I disagree, Dr. Levin. These days, I can’t even imagine how many patients go online and talk to someone with a similar diagnosis – 24/7.

    Hospital support group? When it’s 2 a.m., and you’re stressing over possible side effects from a new medication, where’s the social worker?

    Case in point: this question about a breast cancer drug on HealthCentral’s breast cancer site:

    “My wife has finished chemo and radiation YEA!!!!! Now they have her taking a drug called Arimidex, 1MG per day for the next 5 years. …Reading the list of possible side effects, which seem to cover about every ugly thing a human can experience… So I thought I would ask ‘real’ people what their experiences with this anti-estrogen drug have been. Thanks, Lee.”

    Sure, you can try to read the reams of fine print that come stuffed inside the CVS bag with whatever new drug you’re taking. You can try to get a moment with the busy pharmacist who filled the prescription. 

    Or you can go online and ask for help from someone like you. Someone who’s actually taken the drug under real-life conditions – not in a clinical trial, not in a Big Pharma study.

    Someone who’s been there. 

    And how about Dr. Levin’s assertion that, if you have lung cancer, you don’t want to “go on the computer and talk to someone with lung cancer”?

    Well, I have breast cancer. And there’s nothing I like better than comparing notes with other survivors.

    Say you’re having a mastectomy. Only another survivor – not your doctor, not your surgeon, none of the medical literature – will advise you on what kind of shirt to bring to the hospital with you (one that buttons up the front).

    And only someone who’s been there can be perfectly honest with you about how horrific your chest will look right after surgery, and how much it REALLY hurts when they pull the drains out.

    Surgeons seem bored with the aftermath of your operation. Oncologists tend to gloss over side effects. After all, it’s their job to save your life – not your lifestyle.

  • Scars that won’t fade? Debilitating hot flashes? The realization that your hair will never be as thick and shiny as it once was?

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    Let someone else worry about that.

    Well, that someone else is a fellow survivor – and she’s usually someone you connect with online.

    Someone with whom you end up sharing the most intimate details of your life – anonymously, without a co-pay, and on YOUR schedule, not the doctor’s.

    “They’re not going to get that from the computer,” Dr. Levin?

    You bet we are. Every day. Millions of us.

    We’re called empowered patients, and we’re the new reality. Hear us. Deal with us.

    Or eventually, we’ll stop dealing with you.



Published On: March 20, 2012