[Recently] NPR’s popular program “Talk of the Nation” covered something we discuss often: How e-patients find information and find each other online. Featured guests were Pat Furlong, mother of two boys with a rare disease who started an online community, and Susannah Fox of the Pew Internet and American Life Project, a frequent contributor here. The audio is here.
It’s a good combination: Pat speaks from the heart about her own experience and her passion for community, and Susannah, as usual, speaks as an “internet geologist” — as she once put it, “A geologist doesn’t have opinions about the rocks, she just observes and describes them.” Susannah spoke about her newly-released report “Peer-To-Peer Healthcare,” about which she recently wrote here.
Listener comments begin around 13:00. Examples:
– A woman describes how she started a Facebook group for her painful chronic condition (ankylosing spondylitis) and it’s grown into a website, HurtingButHelpful.org. (Spoonies, take note!) What drove her to create a patient community? “There’s no one else who can understand what I’m talking about.”
– The mother of a newborn with a heart defect found similar parents online. Hearing their stories — and even seeing an upsetting photo — helped her prepare for the surgery.
– On the downside, the daughter of an ovarian cancer patient said her now-cured mom keeps going online to patient communities and getting scared by what she reads. (Host Neal Conan’s observation: “There other parts of the computer that can be addictive, and I guess this one can, too.”)
It’s heartening to hear coverage of online patient communities, including the risks and challenges, in a respected outlet like NPR. (Time covered it, too, a year ago.) And there’s no equal for the reality check of Pew’s data. Some patient activists suggest (and some people fear) that the Internet “frees” patients from doctors, but Pew says that’s not what people are doing. Read more »
*This blog post was originally published at e-Patients.net*
This was the Guest Blog at Scientific American on February 23rd, 2011.
In his new book, “Tabloid Medicine: How The Internet Is Being Used to Hijack Medical Science for Fear and Profit,” Robert Goldberg, PhD, explains why the Internet is a double-edged sword when it comes to health information. On the one hand, the Web can empower people with quality medical information that can help them make informed decisions. On the other hand, the Web is an unfiltered breeding ground for urban legends, fear-mongering and snake oil salesmen.
Goldberg uses case studies to expose the sinister side of health misinformation. Perhaps the most compelling example of a medical “manufactroversy” (defined as a manufactured controversy that is motivated by profit or extreme ideology to intentionally create public confusion about an issue that is not in dispute) is the anti-vaccine movement. Thanks to the efforts of corrupt scientists, personal injury lawyers, self-proclaimed medical experts, and Hollywood starlets, a false link between vaccines and autism has been promoted on a global scale via the Internet. The resulting panic, legal feeding frenzy, money-making alternative medicine sales, and reduction in childhood vaccination rates (causing countless preventable deaths), are sickening and tragic.
As Goldberg continues to explore the hyperbole behind specific “health threats,” a fascinating pattern emerges. Behind the most powerful manufactroversies, lies a predictable formula: First, a new problem is generated by redefining terminology. For example, an autism “epidemic” suddenly exists when a wide range of childhood mental health diagnoses are all reclassified as part of an autism spectrum. The reclassification creates the appearance of a surge in autism cases, and that sets the stage for cause-seeking.
Second, “instant experts” immediately proclaim that they have special insight into the cause. They enjoy the authority and attention that their unique “expertise” brings them and begin to position themselves as a “little guy” crusader against injustice. They also are likely to spin conspiracy theories about government cover-ups or pharmaceutical malfeasance to make their case more appealing to the media. In many cases the experts have a financial incentive in promoting their point of view (they sell treatments or promote their books, for example).
Third, because mainstream media craves David and Goliath stories and always wants to be the first to break news, they often report the information without thorough fact-checking. This results in the phenomenon of “Tabloid Medicine.” Read more »
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*
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*