Talk of the Nation

I had the pleasure of being a guest on NPR’s Talk of the Nation yesterday, along with Dr. Scott Haig and Dr. Ted Eytan, to talk about “Do-It-Yourself Diagnosis on the Web.” (For a substantive summary of the show, check out Josh Seidman’s recap.)

The producers were smart to kick things off with Dr. Haig’s lovely definition of “brainsuckers” (basically, pushy patients) and his wish that all patients were like nurses (trained to take orders from doctors). The phone lines lit up and stayed busy for the next 30 minutes.

At first I was surprised by Dr. Haig’s unapologetic attitude. But upon further reflection, I realized that as an orthopedic surgeon he just may not have had opportunities for developing a more enlightened view. As a researcher, I’ve had the benefit of learning from my respondents and talking with doctors who have developed a viewpoint beyond their own interests.

My personal turning point came while I was writing “Internet Health Resources” and reading survey responses like this one: “Our first visit to the neurologist, when my son was diagnosed with autism was not as devastating as it could have been. My husband and I were well informed and had already figured out the diagnosis by the time we saw the doctor. By being better informed, that first visit was very informative and constructive because we knew the background information, weren’t in denial and could discuss therapies and tests in a logical way with the doctor.”

First, who could argue with that mom’s online pursuit of information? Second, when 80% of internet users are doing something, you are probably not going to get the genie back in the bottle.

I would love to hear about other people’s turning points.

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8 Responses to “Talk of the Nation”

  1. Dan Hoch says:

    Susannah,

    I was fortunate to hear the first two segments of the show, but only a small part of Dr. Eytan’s component. From the recap, I wish I could have heard him as well.

    As a neurologist, I’m especially amused by your personal anecdote. It turns out that the main reason I came to encourage my patients to use the Internet was because visits to neurologists ARE devastating. Neurologists seem to go out of their way to be opaque, and are certainly not known for their skills at demystifying the complexities of the nervous system. That may be in part because there’s so much to know that even they can’t keep up. Personally, I have taken to embracing the help I can get from my patients. By admitting that I don’t know everything and encouraging those patients who have the interest and aptitude to help keep me informed, I am a better doctor.

    Do more knowledgeable patients take more time in the office? Even some advocates say this is true. But, I find that many of my well-read patients actually take less time. I exchange email with them, guide them in their reading, learn about developments that I had missed, and when they come to the office, find that there is a basis for our face to face discussion. The meeting is often more efficient and pleasant.

    Dan

  2. Susannah Fox says:

    Thanks, Dan. It is well worth your time to listen to the whole show — just click on the NPR.org link in my post and then “Listen now.”

    Also, there is a quite good discussion going on on the Blog of the Nation: http://www.npr.org/blogs/talk/2007/12/paging_dr_web_1.html

    Ted got a great last word in — internet access is the sixth vital sign (prompting the listening audience to quickly search the net to find out the other five!).

  3. John Grohol says:

    Surgeons, as a group, generally don’t have a whole lot of patient interaction (nor necessarily do they make time for it)… it’s the way they are generally trained and encouraged to be. I find other doctor specialties to be a little more “enlightened” generally. I think a surgeon’s view is something along the lines of, “I’ve been doing this kind of surgery for 20 years… What could you possibly tell me that I don’t already know about this procedure?”

    In mental health, since outcomes are rarely measured and there are few therapists who adhere to a strict evidence-based treatment regimen, you can find more than a few therapists with a similar close-mindedness. If you know that what you do is mostly art and not as much “science,” it’s harder to defend it when faced with outside evidence or alternative methods.

  4. Judith Feder says:

    Hi Susannah, and good wishes for the New Year. A question for you and other e-patient experts. I recently came across a citation for a 1999 article written by K.J. Roberts, “Patient Empowerment in the United States,” published in Health Expectations. Does anyone know him/her and if he/she has published more recently on this subject? Thanks in advance — Judy

  5. Susannah Fox says:

    Hi Judy! I am not familiar with that article or author, but I’ll look into it.

    Meantime, if anyone wants to check out a lively discussion of Dr. Haig’s article, check out this Salon piece and the accompanying comments:

    Is there a doctor in the mouse?

    Arrogant doctors criticize their patients who go online to research ailments. But they’re wrong. The best health sites are a boon to patients and doctors alike.

    By Rahul K. Parikh, M.D.

    http://www.salon.com/mwt/feature/2008/01/10/web_doctor/

  6. Susannah Fox says:

    Judy, I will email you directly, but in case anyone else is interested in the same topic here is some info about KJ Roberts, who appears to be Kathleen Johnston Roberts and has published quite a few articles since 1999, mostly related to HIV. For example:

    Failure to return for HIV test results: a pilot study of three community testing sites.
    Grusky O, Roberts KJ, Swanson AN. (J Int Assoc Physicians AIDS Care (Chic Ill). 2007 Mar;6(1):47-55)

    Communicating indeterminate HIV Western blot test results to clients: an observational study of three community testing sites.
    Grusky O, Roberts KJ, Swanson AN. (AIDS Patient Care STDS. 2006 Sep;20(9):620-7)

    HIV vaccine trial participation among ethnic minority communities: barriers, motivators, and implications for recruitment.

    Newman PA, Duan N, Roberts KJ, Seiden D, Rudy ET, Swendeman D, Popova S. (J Acquir Immune Defic Syndr. 2006 Feb 1;41(2):210-7.)

    Adherence to antiretroviral medications in HIV/AIDS care: a narrative exploration of one woman’s foray into intentional nonadherence.
    Roberts KJ, Mann T. (Health Care Women Int. 2003 Jul;24(6):552-64.)

    Thanks for the question,
    Susannah

  7. e-Patient Dave says:

    > I would love to hear about other people’s turning points.

    I’ll tell you, mine came in 1979, and I’m not kidding.

    I had a small skin cancer on my nose, and I got a referral to a plastic surgeon to have it removed. I asked if the procedure he used would leave a scar – a sensible-enough question, I thought. He got huffy and said “I *am* a plastic surgeon.” Then in surgery he used a skin flap procedure that others have since said was completely unnecessary, messing with much more tissue than necessary, and never came to see me afterward – I had to check myself out of the hospital.

    From that moment on it was clear to me that I’d have nothing to do with any doctor (or professional of any sort, for that matter) who wasn’t willing to engage in sensible conversation with me.

    Of course, virtually every doctor I’ve ever dealt with has met my standard. I’ve had just one counterexample since then – a dentist who aggressively sized up my mouth. I could practically see the BMW logo reflected in his glasses. So, I said I wasn’t comfortable, and just left. (He left the country 18 months later, after tax evasion charges were filed.)

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