Yesterday (March 3), 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:
- 70% of adults in the U.S. say they received information, care, or support from a health professional.
- 54% of adults say they turned to friends and family.
- 20% 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 SPM should start one?
How can I downaload the Audio
First, thanks to Dave for posting this!
Second, if you have trouble accessing the audio, NPR provides a transcript:
The best part of the show, in my opinion, was the listener comments. They told the story of my data better than I could have: The internet connects people not only with information, but also to each other.
Note also that the callers/emailers delivered a nuanced message. There was one person who said she wished her mom had NOT found an ovarian cancer group online since the stories of recurrence and death are very scary and painful. That’s part of the story of the online world, too.
Also if you click through to the audio on the NPR site, it does have a link to download it.
Hey Dave, Great post, but would you consider swapping BLUE for red color at hypertext links, for the sake of color-challenged readers (e.g. ME). Either that, or UNDERLINE your red links so that I can see them. Please be aware that color blindness is truly a form of blindness and a real disability. Thanks.
Hi Robert – great question, nobody’s ever mentioned that, but I get it.
I’m not a WordPress theme geek but I’ll see what we can do. Thanks for asking. (And it’s “us” not “me.” I’m just the noisiest one.:-))
We made the inline links in the blog itself underlined, let us know if that’s an improvement. Links in the sidebars are not underlined.