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A Young Father and His Information

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It was sometime in the mid-nineties that parents started showing up in my office with reams of paper.  Inkjet printouts of independently unearthed information pulled from AltaVista and Excite.  Google didn't exist. In the earliest days of the web, information was occasionally leveraged by families as a type of newfound control.

A young father and his inkjet printer

One case sticks clearly in my mind. It was that of a toddler with medically unresponsive acid reflux and chronic lung disease. After following the child for some time, the discussion with the family finally moved to the option of a fundoplication (anti-reflux surgery).  On a follow-up visit the father had done his diligence and appeared in the office with a banker box brimming with printed information.  He had done his homework and his volume of paper was a credible show of force.

At the time in Houston the Nissen and Thal fundoplication were the accepted fundoplication procedures in children.  Deep from the bottom of one of the boxes the father produced a freshly reported method of fundoplication from Germany. He had compared the potential complications with other types of fundoplication and this was the procedure he wanted.

What he didn't understand was that an experimental technique used on a limited numbers of adults didn't necessarily represent the best option for his toddler.  I gave it everything I had but didn't get very far. The tenor of his argument was slightly antagonistic.  Ultimately there was nothing more I could do.  I deferred the remainder of the discussion to one of our best talking surgeons but knew the father wouldn't get the time and consideration that I had offered.

I never saw the child again.  As they say, the father voted with his feet.

Information is the new third party in the exam room

I recall this so vividly because it was the first time that a parent insisted that their own information should supercede better clinical judgment and the clear individual needs of a child.  In hindsight, I believe, there was more to the encounter than a dialog surrounding a procedure.  This visit was about a young father's newfound capacity to defy a system that for years has marginalized patients.

This was the first of many encounters involving a theme that has come to define my work with patients:  the contrast between information and good information. Information is the new third party in the exam room.

Since the mid-nineties I have worked with thousands of empowered young families.  Any success that I've enjoyed stems from respect of the relationship that my patients have with their information. Despite the rare case where the encounter is seen as a struggle of perceived control, my vantage point of the patient's evolving relationship with information has been remarkable.

Sometimes I feel like a witness to history.

More Blog Posts by Bryan Vartabedian

author bio

Bryan Vartabedian, M.D. is a pediatric gastroenterologist at Texas Children’s Hospital and an Assistant Professor of Pediatrics at Baylor College of Medicine in Houston, Texas. He writes and thinks on the convergence of social media and medicine on his blog, 33 Charts. Want to know more? Go to: www.33charts.com  or subscribe to the RSS Feed.


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ljones888 says
February 25, 2011 at 3:05 PM

This topic is a hard one. As I work to educaate patients on how to "navigate" their health care system, I am confronted with the reality that empowered patients do not always fair better in the actual day-to-day contact with their doctors. I have witnessed, myself, the cold shoulder in doctor visits when I tried to communicate from an analytical standpoint. So where does that leave us? How do we prepare patients without making doctors defensive? I can sympathize that when patients come in with their own information it can seem like they are undermining medical "authority"......but does it take a special doctor to accept that an analytical patient can also come to a valid conclusion?