Society for Participatory Medicine
e-patients.net blog
pts as teachers
e-patient stories, end of life, general, patient networks, pts as teachers, understanding statistics
Tami Boehmer: Hope versus statistics
Guest blogger Tami Boehmer shares a recent conversation with e-Patient Dave about the pitfalls of survival statistics and the power of hope. Tami’s blog, “From Incurable to Incredible,” is at www.miraclesurvivors.com. I recently had the honor of speaking with Dave deBronkart, widely known as “e-Patient Dave.” Dave is the leading spokesperson for the e-Patient movement [...]
Read Morefound on the net, pts as teachers
Two Doctors Take a Patient-Centric Approach in New Books (NYTimes)
Today’s New York Times has a review of two new books, Doctors with Plenty of Time for Patients. Reviewer Abigail Zuger MD says “Suppose … you could actually rent the doctor’s attention for as long as you needed it?” In these books two doctor take plenty of time to explain things to patients. The first [...]
Read Moree-patient stories, hc's problem list, pts as teachers, Why PM
Powerful new “Doctor becomes an e-patient” story in Journal of Participatory Medicine
Two years ago we wrote “Let’s hear it for the ‘d-patients’” — doctors who become e-patients themselves. We said “D-patients prove that patient empowerment is anything but anti-doctor. Heck, sometimes it’s a doctor preservation movement.” A new article in our Journal of Participatory Medicine provides a compelling example: A Physician’s Experience as a Cancer of the [...]
Read Morepatient networks, pts as teachers, trends & principles
NPR’s Talk of the Nation: Patients Seek Moral and Medical Support Online
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 online community, and Susannah Fox of the Pew Internet and American Life Project, a frequent [...]
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“The Spoon Theory”: brilliant description of chronic illness
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 “spoonies” raving about this months ago but I finally took [...]
Read Morepolicy issues, pts as teachers, research issues
President’s Cancer Panel: Input, Please
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 Research: Accelerating Scientific Innovation” (PDF of the agenda).
Read Moree-pts resources, found on the net, policy issues, pt/doc co-care, pts as teachers
A live case study in patient engagement and participatory thinking
Ted Eytan drew our attention to a real-time example of participatory thinking, in the case of his friend Matt, an engineer who’s recently been diagnosed with MS. His post This is what $8,000 worth of drugs looks like tells the story, including videos of two doctor’s very different approaches, and a robust comment stream. The [...]
Read Moree-pts resources, medical records, positive patterns, pts as teachers, Why PM
DC seeks citizen input (YOUR input) on health IT policy. Comment now!
Josh Seidman is in charge of Meaningful Use at the Department of Health and Human Services. (Meaningful Use refers to the guidelines for how providers should use electronic medical records.) He wants input from us – that’s you: ONC is eager to get as much public feedback as possible on its initial thoughts on a [...]
Read Moree-patient stories, pts as teachers, reforming hc, Why PM
Day 1 of TEDMED: Charity Tillemann-Dick, e-patient
Update Jan. 18: the video has just been released – see it at the bottom of this post. TEDMED is a truly extraordinary conference in San Diego, a fall sibling of TED talks focused on medicine. TED talks are just 18 minutes long, chosen and designed to blow your mind. They don’t all hit that level, [...]
Read Morepositive patterns, pt/doc co-care, pts as teachers, reforming hc, trends & principles, Why PM
How One Cancer Center Lets Patients Call the Shots
Guest post by Erin Macartney (Twitter) of Palo Alto Medical Foundation. We would welcome similar posts from providers (or anyone else) who’s illustrating what we advocate in the Society for Participatory Medicine: truly patient-centered care, in which “networked patients shift from being mere passengers to responsible drivers of their care, and which providers encourage and [...]
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