[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*