Recently, I’ve had an interview with a national newspaper and the woman who performed the interview told me she was surprised that I seemed to be the first doctor in her life who was happy about patients using the internet. Well, she surprised me with this statement as I’ve never thought about that before. But she must be right. There are many doctors who get upset when they find out the patient tried to find information online. They are frustrated as they don’t even know how to use these online tools and have no idea how to help the patients in this perspective.
Myself, I’m pretty much happy about it. I love to hear patients Read more »
*This blog post was originally published at ScienceRoll*
[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*
There’s a conversation brewing over use of the term “e-patient.” The online health revolution is over, it’s been suggested. Web use, after all, has become so widely adopted that the term “e-patient” may have more historical meaning.
Dropping the “e” might indicate that we’ve arrived. I’m not so sure. Perhaps the revolution we thought was going on never entirely took off. Or maybe it’s all about how you define the revolution.
Here’s what I see: Day in and day out, over weeks and months, hundreds of patients visit my clinic. I talk to them candidly about the tools they use and how technology and community is changing how they see their problems. I do the same with friends and family members. And like it or not, they’re a lot closer to “e-Patient 1.0″ than many of us would like to think. Read more »
*This blog post was originally published at 33 Charts*