by e-Patient Dave | Mar 4, 2011
Yesterday (March 3), 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...
by e-Patient Dave | Mar 1, 2011
Noted patient activist Dale Ann Micalizzi, founder of Justin’s HOPE (blog), has just been named co-chair of the 2011 Forum of the Institute of Healthcare Improvement (IHI). The IHI Forum is a major international healthcare event, with over 5,000 people attending...
by e-Patient Dave | Feb 27, 2011
Again this year, as in 2009 and 2010, we’re pleased to highlight Rare Disease Day (February 28), with a post from Wendy White of Siren Interactive. Here’s last year’s prolog: One profound shift in healthcare enabled by the internet is the Web’s...
by e-Patient Dave | Feb 25, 2011
In December we posted about practice variation and shared decision making (SDM), a field of research originated at Dartmouth decades ago and best known as publisher of the Dartmouth Atlas, which describes the amazing amount of unexplained variation in how many doctors...
by Susannah Fox | Feb 25, 2011
Last fall, at the e-Patient Connections conference, I gave a sneak preview of some survey results which are set to be have been released on the Pew Internet site on Monday, Feb. 28. I hoped to spark new ideas for a savvy, plugged-in audience and I ended up surprising...
by e-Patient Dave | Feb 18, 2011
The Institute for Healthcare Improvement (IHI) has generously released the session video of the keynote that SPM president Dr. Danny Sands and I delivered at the IHI’s annual Forum in December. At this event the IHI did two extraordinary patient-oriented things:...
by Susannah Fox | Feb 1, 2011
This post is first and foremost a thank-you note. Thank you to everyone who posted a comment, emailed me, or tweeted a suggestion in response to my request for input last July: Crowdsourcing a Survey. Six new topics came directly from those conversations. Thank you to...
by e-Patient Dave | Jan 24, 2011
Click the image to view the letter we submitted last week to ONC, commenting on the December 10 report of the President’s Council of Advisors on Science and Technology (PCAST) about health IT. The response was driven by SPM policy chair David Harlow and approved...
by e-Patient Dave | Jan 21, 2011
Update 1/22: this was originally in our “Found on the Net” sidebar, but it’s attracted enough comments that it belongs in the mainstream. I was researching the coverage of statins on Health News Review, the great e-patient resource we’ve often...
by e-Patient Dave | Jan 14, 2011
Update 3 pm ET: Thanks to Gilles Frydman for pasting in, in a comment below, the BMA’s actual statement, which as he says isn’t nearly as paternalistic as I thought from reading the BMJ piece. Need to discuss how this happened. _______ According to...
by e-Patient Dave | Jan 13, 2011
A recurring theme on this blog is the need for empowered, engaged patients to understand what they read about science. It’s true when researching treatments for one’s condition, it’s true when considering government policy proposals, it’s true...
by e-Patient Dave | Dec 20, 2010
If you don’t truly understand how draining it can be to live with chronic illness, including chronic pain, go read The Spoon Theory right now. In 5 minutes it forever changed my own awareness of my wife’s arthritis and bone pain. On Twitter I saw...
by Susannah Fox | Dec 13, 2010
Given the evidence that people are ready, willing, and able to engage in online discussions about cancer prevention and treatment, what steps are being taken to ensure that the U.S. (and the world) does not miss this latest opportunity for education and discovery? The...
by Susannah Fox | Dec 10, 2010
The New York State Department of Health AIDS Institute, in partnership with AIDS.gov, held a one-day forum on social media, HIV, and sexually transmitted infections (STI) that turned out to be an unfiltered discussion of love, truth, and technology. Why was it so...
by e-Patient Dave | Dec 6, 2010
I’m at the annual IHI Forum in Orlando, in an all-day workshop (class photo at left) titled “Whose Care Is It, Anyway … and Can Health IT Help?” Laura Adams of the Rhode Island Quality Institute was just talking about the social obstacles to...
by Peter Frishauf | Dec 3, 2010
(To help you visualize the scene, see the famous Coca-Cola Santa image. Now imagine Peter Frishauf asking Santa for that train set!) Dear Santa, I always believed in you Santa. All those kids who said it wasn’t true, you weren’t real, well guess what: I knew you were....
by e-Patient Dave | Dec 2, 2010
A year ago Gangadhar Sulkunte shared his story here about how he and his wife became e-patients of necessity, and succeeded, resolving a significant issue through empowered, engaged research. As today’s guest post shows, he’s now actively engaged in...
by Susannah Fox | Nov 30, 2010
What evidence would you bring to convince cancer researchers and policy makers to pay attention to how the internet is changing health and health care? That’s my challenge for the Dec. 14 meeting of the President’s Cancer Panel, “The Future of Cancer...
by Susannah Fox | Nov 23, 2010
What’s the point of all this technology if it doesn’t motivate behavior change? That’s what we debated almost a year ago and now I’d like to bring up the same question, but with a few more examples. If you have time, I highly recommend watching...
by Susannah Fox | Nov 22, 2010
I have seen the future of health and it’s networks (with apologies to Lincoln Steffens). Chronic disease is exploding in the U.S. The number of primary care health professionals is declining. Behavior change is difficult. But what are we going to do about it?...
A cure for what killed Doc Tom! Can people afford it?June 27, 2025
Learning Health Systems Empower Every American to Actually Make America Healthy Again Together, Part 2May 29, 2025
More important than Time and MoneyFebruary 5, 2025
We Can Change the US Healthcare System: Your Health, Your VoiceJanuary 15, 2025
Recent Comments