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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. Read more »

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

New Survey: 1 In 10 Cell Phone Users Have Health Or Medical Apps

A new survey from the Pew Internet & American Life Project shows how the proliferation of smart mobile devices is causing a shift in the way users are accessing data and information on health.

Some of the most interesting findings are related to the substantial number of users who actually have applications that help them manage and track their health. Some key findings from the survey:

*17 percent of cell owners have used their phone to look up health or medical information on the Internet; 29 percent of cell owners ages 18 to 29 have done such searches.

*9 percent of cell phone owners have apps they use to help track and manage health.

*The heaviest use of health or medical related apps was by young adults: About 15 percent of those ages 18 to 29 have such apps, compared to 8 percent of cell users ages 30 to 49. Read more »

*This blog post was originally published at iMedicalApps*

Public Health: What’s Digital Got To Do With It?

Better Health’s Dr. Val Jones recently expert-moderated TogoRun’s Digital Capital Week event entitled “Public Health: What’s Digital Got to Do With It?” featuring panelists Susannah Fox of the Pew Internet & American Life Project, Maya Linson of the National Association of Public Hospitals and Health Systems, and Erin Enke of TogoRun. A capacity crowd in attendance at the Pew Research Center and another group following on Twitter sparked a vibrant online discussion of how health institutions are using social media and how digital innovation is improving public health:

A conversation with Maya Linson about “Public Hospitals and the Social Media Imperative” followed via podcast: 

SOURCE: Unleashed: The Health + Communications Blog

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