March 11th, 2011 by DavedeBronkart in Research, True Stories
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[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*
November 7th, 2010 by EvanFalchukJD in Better Health Network, Health Tips, News, Research
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“What’s the highest peak in North America, Mt. McKinley or Denali?” This is a great question the Web can answer for you. “What’s that lump on my neck?” This is another great question — but not one you should rely on the Web to solve.
Best Doctors recently conducted a Twitter-based poll to find out what channels of information people use to get healthcare advice. It turns out, 54 percent of respondents use the Web as their primary source of information. Is this kind of do-it-yourself medicine a good idea?
I’m a firm believer that you should do everything you can to make sure you’re getting the right care when you’re sick. But before you start your do-it-yourself journey, here are five things to keep in mind:
1. To get the right answer, you need to ask the right questions. If you decide that that lump on your neck is a sign of lymphoma, you’re going to get very worried and start researching everything you can on lymphoma. You may see your doctor and when he tells you it’s actually a benign cyst, you’re going to have a hard time believing him. Now, your skepticism is a good thing, but before you start driving yourself crazy with serious conclusions, make sure you have your facts straight. Read more »
*This blog post was originally published at See First Blog*
September 8th, 2010 by Bryan Vartabedian, M.D. in Better Health Network, Health Policy, Opinion
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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*
August 10th, 2010 by DrRob in Better Health Network, Health Policy, Opinion
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Dr. Wes (a cardiology blogger whom all should read) wrote a very compelling post about technology and the bondage it can create for doctors:
The devaluation of doctors’ time continues unabated.
As we move into our new era of health care delivery with millions more needing physician time (and other health care provider’s time, for that matter) –- we’re seeing a powerful force emerge –- a subtle marketing of limitless physician availability facilitated by the advance of the electronic medical record, social media, and smartphones.
Doctors, you see, must be always present, always available, always giving.
These sound like dire words, but the degree to which it has resonated around the Web among doctors is telling. Read more »
*This blog post was originally published at Musings of a Distractible Mind*
July 13th, 2010 by EvanFalchukJD in Better Health Network, Health Policy, News, Opinion, Research, True Stories
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If a website touted misleading healthcare information, you’d hope the government would do something about it. But what do you do when the government is the one feeding the public bad information?
Last week the Obama administration launched the new Healthcare.gov. It’s mostly an online insurance shopping website. It’s very much a federal government version of sites like eHealthInsurance.com or Massachsetts’ HealthConnector site, which have been around for years.
So when HHS Secretary Kathleen Sebelius, in announcing the new site, claims it gives consumers “unprecedented transparency” into the healthcare marketplace, you should wonder what she means. But that’s not the big problem with this site. Read more »
*This blog post was originally published at See First Blog*
[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.
