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. Read more »
*This blog post was originally published at 33 Charts*
Many doctors roll their eyes whenever patients bring in a stack of research they printed out, stemming from a Google search of their symptoms. A piece by Dr. Zachary Meisel on TIME.com describes a familiar scenario:
The medical intern started her presentation with an eye roll. “The patient in Room 3 had some blood in the toilet bowl this morning and is here with a pile of Internet printouts listing all the crazy things she thinks she might have.”
The intern continued, “I think she has a hemorrhoid.”
“Another case of cyberchondria,” added the nurse behind me.
It’s time to stop debating whether patients should research their own symptoms. It’s happening already, and the medical profession would be better served to handle this new reality.
According to the Pew Internet and American Life Project, 61 percent of patients turn to the web to research health information. That number is from 2009, so presumably it’s higher today. Health information online is akin to the Wild, Wild West. Stories from questionable sites come up on Google as high — or higher — than information from reputable institutions. Read more »
*This blog post was originally published at KevinMD.com*
My colleagues at Harvard Health Publications and I have a mission: To provide accurate, reliable information that will help readers live healthier lives. We work hard to fulfill that mission, and the feedback we get from folks who read our newsletters, Special Health Reports, books, and online health information indicates we are on the right track. Every so often we hear something from a reader that makes me especially proud of the work we do.
This letter was recently sent to the editor of the Harvard Women’s Health Watch:
One of your mailings undoubtedly saved me a lot of grief. (My kids, anyway.) I was aware of a woman’s heart attack symptoms being different from a man’s, and your brochure contained a paragraph confirming that. Early in June I was packing for a trip to celebrate my brother’s 90th birthday, at the same time a ditching project was being done in my back lot. Trying to deal with several matters at the same time is a talent I’ve outgrown, at 88, so didn’t think too much of the sudden fatigue and vague aches I felt in jaw & arms. I crashed for a nap in my recliner, felt OK afterwards, and figured it was just stress. The next day I was ready to leave, but got to thinking of those symptoms, and the fact the brochure had arrived at just that time, and wondered if it was more than coincidence and maybe I should pay attention? Didn’t much like the idea of something happening out in the middle of nowhere, so took myself to the fire hall where an EMT was on duty. He ushered me into the ambulance, did an EKG, and soon I was being helicoptered on doctor’s orders to St. Joseph’s Hospital. There I had 3 stents installed, and they apparently are doing their job. Thank you! Read more »
*This blog post was originally published at Harvard Health Blog*
HealthMash, WebLib’s next-generation semantic health search engine, will release an iPhone application in January. It utilizes proprietary natural language processing and semantic technology tools and resources in order to find highly relevant, reliable, and recent health information from the most trusted sources and facilitate user exploration and discovery.
*This blog post was originally published at ScienceRoll*
When it comes to understanding medical information, even the most sophisticated patient may not be “smarter than a fifth grader.”
In one of the largest studies of the links between health literacy and poor health outcomes, involving 14,000 patients with type 2 diabetes, researchers at the University of California San Francisco and Kaiser Permanente found that more than half the patients reported problems learning about their condition and 40 percent needed help reading medical materials. The patients with limited health literacy were 30 to 40 percent more likely to experience hypoglycemia — dangerously low blood sugar that can be caused if medications are not taken as instructed — than those with an adequate understanding of medical information.
Now, federal and state officials are pushing public health professionals, doctors, and insurers to simplify the language they use to communicate with the public in patient handouts, medical forms, and health websites. More than two-thirds of the state Medicaid agencies call for health material to be written at a reading level between the fourth and sixth grades.
A new federal program called the Health Literacy Action Plan is promoting simplified language nationwide. And some health insurers, doctors’ practices, and hospitals have begun using specialized software that scans documents looking for hard-to-understand words and phrases and suggests plain-English replacements. Read more »