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How e-Patients Find Answers And Each Other Online

NPR logo[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.

According to Pew:

  • 70 percent of adults in the U.S. say they received information, care, or support from a health professional.
  • 54 percent of adults say they turned to friends and family.
  • 20 percent say they turned to peers with the same condition.

“The oft-expressed fear that patients are using the Internet to self-diagnose and self-medicate without reference to medical professionals does not emerge in national phone surveys or in this special rare-disease community survey.”

NPR’s accompanying online post ends with a line that echos what we’ve said here about the mama lion type of e-patient: “You will not find a more passionate detective,” Fox adds, “than a mom who is trying to find out what she can do for a child.”

The complete transcript is here, including a few listener comments. One in particular, by a Ben Munoz, caught my attention: “To anyone with a rare disease, the first thing you should do is locate an online support community for your condition.”

I wish we had a list of such communities — perhaps the members of the Society for Participatory Medicine should start one?

*This blog post was originally published at e-Patients.net*


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