Why Ted Kennedy Isn’t Obsessively Searching the Internet

May 24, 2008 at 5:43 am 3 comments

Sen. Ted Kennedy was diagnosed this week with a malignant tumor. I bet he is not online looking for answers right now. Why? Because the answers have been provided by some of the world’s experts. In fact, they are there for everyone to read in the Boston Globe and other newspapers, complete with graphics.graphic

Some say health is the great equalizer. (Others call education, the internet, – you name it – the great equalizer.) Many studies have examined health disparities and looked at the impact of health insurance, ethnicity, gender, and other factors on the quality of health and health care.

Health disparities aside, anyone can become ill. Everyone’s hearts go out to Sen. Kennedy and his family at his diagnosis. But many people, given a devastating diagnosis – or even a minor one – turn to the internet for help.disparities

Before the internet, people relied primarily on their doctors. Now they rely on their doctors and the internet. But do people use the internet because they want to or because they have to?

Most people do not have world-renowned experts chiming in on the best course of treatment. Even the graphics – I can only remember one time that a doctor drew a sketch for me.

My friend Maureen emailed me:

I certainly have used the internet for health information. Usually what I find scares the daylights out of me! Or it’s too general and simplistic- until I find the right sites. Since I’m such a worrier I always need to be careful in that regard because it can be addictive- just one more search!

Maureen, a physician’s daughter, uses the internet for herself and her family, as do many others, obsessively searching for answers. People like Maureen and me use the internet because we are not rich or famous enough to have teams of experts to treat us. Ultimately, no one wants to be ill and, if they are, they want the best expertise available.

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3 Comments Add your own

  • 1. Claudia Escribano  |  June 13, 2008 at 3:39 pm

    Hey Lisa,
    Really interesting post, which hit a strong chord with me.

    Several years ago, my mother was diagnosed with a rare form of appendiceal cancer called Pseudomyxoma Peritonei (PMP).

    Unfortunately, she got stuck with a terrible doctor; we’re talking 3-hour waits in reception, only to talk to one of the doctor’s minions (maybe a glimpse of the all-important doctor flitting by), and get yet another order for a CT-scan. But no information, no action, no encouragement or caring, and after months of testing no treatment plan. The illness was hard and scary, but probably harder was the doctor’s (lack of) approach. And because this cancer is so rare, there weren’t any other doctors who treated this cancer in my mother’s home city.

    So, thank God for the Internet! Our friends and family members were all searching for information to help us. And the Internet provided:
    1) Information
    2) Support from other patients and caregivers

    This particular type of cancer is so rare that (at the time anyway), it wasn’t even listed on the American Cancer Society’s site. But my Aunt Helen managed to find the site for a doctor in Washington, DC, Dr. Paul Sugarbaker, who is considered one of the world’s leading experts on PMP. His Web site was a treasure trove of information. And when I called the posted phone number, I was connected with the doctor’s wife, who patiently answered all my questions. Even though he typically didn’t see elderly patients, Dr. Sugarbaker examined my mother and for the first time since her diagnosis, she had a treatment plan.

    My mother’s original doctor had told us that chemo was not effective for this type of cancer. Dr. Sugarbaker’s treatment included surgery followed by chemo. Thanks to the Internet, we ended up knowing more about PMP than my mother’s original doctor.

    Through two online communities of PMP patients and caregivers, we were connected to others who were going through or had gone through the same ordeal. We learned from each other. We compared notes. All kinds of information was exchanged that will probably never be published in a medical journal. Patients could tell us what it was really like after the surgery. Caregivers shared tips and tricks for covering all the costs of travel and medical expenses.

    When the end came, and the doctors were telling us that there was no more hope, it was hard for me to stop fighting. It felt wrong to just allow my mother to die. Although she was no longer digesting food, her vital signs were picture perfect. I kept asking people, “How do you know when it’s the end?”. Luckily for me, I found a woman on the PMP Bellybuttons group, who had just walked down that path. We exchanged some messages on a discussion board and ultimately scheduled a phone call. We spent 2 hours on the phone while she described her father’s recent death. I think it was healing for her to talk about it. It was life-changing for me because her story answered my question and clearly laid out for me what lay ahead and what I would have to do.

    Anyway, a long story to say that you are absolutely right: The Internet is a powerful tool to help patients and caregivers empower themselves so that they don’t have to be at the mercy of their doctors.

    I wish I could say that in our case the Internet had saved my mother’s life. But the information we got definitely helped her and our mental/emotional state when we really needed it.

  • 2. Gail McLaughlin  |  June 7, 2008 at 1:50 am

    Hi Lisa,
    Next Tuesday I will be in surgery – bilateral total knee replacement. For the last month I have been an Internet health junkie, scooping up as much information as I can to prepare myself for this surgery, physically, mentally and financially.

    Your article just touches the tip of the iceberg. There is an odd mix of *real* information available to a person facing surgery and rehab, and an appalling lack of certain information.

    Physically, there is a lot of information. There are brochures, books, even videos, explaining the procedure more thoroughly than the surgeon does.

    Mentally, there is not much input from the surgeon to prepare you. Books offer a little more, but the bonanza is on the web. Success stories are chronicled. Many horror stories are described. You can’t say you aren’t forewarned of everything that can possibly go wrong. The horror stories are offset by the positive statistics, so I hope I am one of the happy statistics.

    Financially, there is next to nothing. What does knee surgery cost? To find out you have to know how everything breaks down: the diagnosis, the surgeon’s fee, the labs, the prostheses, the anesthesia, blood, the facility costs for both the hospital where the surgery is performed and the rehab facility, rental of DME (durable medical equipment), outpatient rehab, and probably more that I am not even aware of yet. Then you have to know the procedure codes for each of those. The procedure code is the key that unlocks the cost.

    I have health insurance. I naively expected that I could call my health insurance representative to get a ballpark figure around the total cost. Not so.

    I can find out if the medical providers are “in plan” or not. Well, maybe. One of my medical providers claims they are in plan (and I believe them), but the insurance representative could not verify that.

    Then, I have to know the diagnosis code and the exact procedure code, so the representative can look up the agreement between the medical provider and the insurance company, then look at my plan, then calculate dollar amount. I can ask the business office of the medical provider for the same information too. Unfortunately, every quote so far has been different.

    Considering that over 1 million hip replacement and knee replacement surgeries are performed each year in this country (National Center for Health Statistics, 5/6/2008), I would expect more information to be available. Since the health insurance companies ultimately determine the cost, I would expect that they would have that information. Since most health insurance companies are not in the dark ages technically, I would expect that much of this information could be available online, once I logged in, of course.

    It isn’t so.

    Bottom line, I have spent the last four weeks trying to get this information. So far I know what the surgeon’s fee is and the daily cost of staying at one facility. To get that information I had to make many phone calls, wait days for call backs, and clarify the differences in quotes. As for the rest of it, guess I will have to wait until I get the bill. I hope I can afford it.

  • 3. VoiD  |  May 24, 2008 at 2:14 pm



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Lisa Gualtieri, PhD, ScM

Lisa GualtieriLisa Gualtieri is Assistant Professor at Tufts University School of Medicine in the Department of Public Health and Community Medicine. She is Director of the Certificate Program in Digital Health Communication. Lisa teaches Designing Health Campaigns using Social Media, Social Media and Health, Mobile Health Design, and Digital Strategies for Health Communication. Contact Lisa: lisa.gualtieri@tufts.edu


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