[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*
Many doctors roll their eyes whenever patients bring in a stack of research they printed out, stemming from a Google search of their symptoms. A piece by Dr. Zachary Meisel on TIME.com describes a familiar scenario:
The medical intern started her presentation with an eye roll. “The patient in Room 3 had some blood in the toilet bowl this morning and is here with a pile of Internet printouts listing all the crazy things she thinks she might have.”
The intern continued, “I think she has a hemorrhoid.”
“Another case of cyberchondria,” added the nurse behind me.
It’s time to stop debating whether patients should research their own symptoms. It’s happening already, and the medical profession would be better served to handle this new reality.
According to the Pew Internet and American Life Project, 61 percent of patients turn to the web to research health information. That number is from 2009, so presumably it’s higher today. Health information online is akin to the Wild, Wild West. Stories from questionable sites come up on Google as high — or higher — than information from reputable institutions. Read more »
*This blog post was originally published at KevinMD.com*
What do cell phones and health-information seeking have in common? Very little, at least among the chronically ill (e.g., the folks who are driving healthcare use and cost). An American Medical News article about the latest Pew Research Center’s Internet & American Life Project study on mobile phone use caught my eye. The introduction to the article reads:
Despite the proliferation of cell phones in the United States, the number of people using them to access health information is low. But experts believe the sheer number of people using mobile phones and wireless devices means that health information eventually will get more mobile as well.
According to the study, 85 percent of Americans use mobile phones, but only 17 percent of cell phone owners have used them to look up health information. Nine percent of Americans have downloaded a health-related app on their cell phone.
Get this: The highest use of cell phone health-information seeking and downloading cell phone health apps was among 18- to 29-year olds at 29 percent and 15 percent respectively. With the exception of accidents, 18- to 29-year-old adults are generally among the most healthy demographic. Read more »
*This blog post was originally published at Mind The Gap*
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*
San Francisco recently passed a law requiring disclosure to consumers of the amount of radiation emitted by cellphones at the point of sale. Research has been inconclusive on whether there is a link between cellphone usage and cancer. More definitive findings could be years away.
Understandably the law addresses a universal concern that we all have. We are more fearful of threats we can’t see, smell, hear, taste, or touch. Radon, carbon monoxide, and radiation fit these criteria.
Yet, cellphones kill in other ways which are far more immediate, equally as subtle, and just as concerning. This silent epidemic is increasing at an alarming rate. Everyone sees it, but does nothing about it. Read more »
*This blog post was originally published at Saving Money and Surviving the Healthcare Crisis*