Society for Participatory Medicine
e-patients.net blog
positive patterns
found on the net, JoPM, others' e-patient stories, positive patterns, pts as teachers
Rheumatoid e-Patients Share the Spotlight at Medical Conferences
The Journal of Participatory Medicine has published a narrative by Kelly Young entitled “Present, Patient, and Accounted for: How and Why Patients Are Present at Scientific Meetings of the American College of Rheumatology.” Young describes how the Rheumatoid Patient Foundation evolved from her and other e-patients’ efforts to better understand their condition through online research [...]
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Health, Technology, and Communities of Color
Serendipity brought me two opportunities this week to present Pew Internet’s data on communities of color and young people, particularly as it relates to health. On Wednesday I was a guest of the Federal HIV/AIDS Web Council and on Thursday I spoke at a meeting convened by CommonHealth ACTION. I’ll share some insights I picked [...]
Read Moregeneral, positive patterns, research issues, trends & principles
Opening the Door to Closeted Science
NOTE: We’re happy to welcome back Sarah Greene, one of the founding members in 2009 of SPM and its journal. She left a while ago for London, where she’s continued her work at the leading edge of thought about medical knowledge. Sarah is ahead of most of us. Only in the past six months did [...]
Read Moremedical records, news & gossip, positive patterns
“I have a right to my damn data”: Hugo Campos in the Mercury News
Well, SPM’s resident ICD patient is getting quite a lot of attention these days! First a feature in MIT Technology Review in November, then his TEDx video was released this month, leading to a spot on NPR’s On The Media on 1/20, and now he’s on the front page of Silicon Valley’s newspaper – a 900 [...]
Read Moredemographics, positive patterns, pt/doc co-care
The Rise of the e-Patient
Lee Rainie, director of the Pew Internet Project, presented this wonderful overview of the Project’s health findings at Providence St. Joseph Medical Center in Burbank, CA, on January 12. The Rise of the e-Patient View more presentations from Pew Research Center’s Internet & American Life Project Another summary of the Project’s health research is the [...]
Read Morenews & gossip, positive patterns
e-Patient hits the mass media: WBZ Radio and Angie’s List magazine
It’s one thing when we “talk amongst ourselves” in our own circles; it’s a whole different thing when the message starts popping up in *mass media*, where it reaches people who had no idea. So it’s big news that we’ve had TWO mass-media developments this week with almost identical titles: Fabulous article in the January [...]
Read Morepositive patterns, pt/doc co-care, reforming hc, Why PM
MIT Media Lab’s Health & Wellness 2012: ten day innovation fest, six us-centered projects
Updated 9:38pm ET – fixed many broken links :-/ I’m spending today (ONLY today, unfortunately) at the MIT Media Lab’s third annual Health & Wellness Innovation event. It’s a two week competition – six teams pursuing some terrific ideas for the most patient-friendly health innovations I’ve ever heard of. Or close to it. I’ll write [...]
Read Moree-pts resources, patient networks, positive patterns
ACOR kidney cancer community wins 25th anniversary “Maily” Listserv award
It’s fitting that our last post of the year should be about a patient community … winning an award! ACOR’s “KIDNEY-ONC” kidney cancer patient community was recently honored with the “Maily” Listserv Choice award in this, the 25th anniversary year of Listserv® technology. In announcing the award, the vendor’s site (Lsoft.com) described the KIDNEY-ONC list [...]
Read MoreJoPM, others' e-patient stories, positive patterns, pt/doc co-care, reforming hc
A physician who really understands patient-centered care
The Journal of Participatory Medicine has just published “The Patient Will See You Now,” a thought-provoking and rather moving narrative by John Krueger, MD. In telling his own story of becoming and maturing as a physician, the author persuasively argues that the key to practicing patient-centered medicine is devoting time to listen to patients’ stories [...]
Read Moree-pts resources, positive patterns, pt/doc co-care
Two great posts on how patients can be responsible for their care
In the Society for Participatory Medicine we talk about patients shifting “from being mere passengers to responsible drivers of their health.” Two posts Tuesday from SPM members provide some great specifics. First, orthopedist @HJLuks published Your Role in Avoiding Medical Errors, 101. A few highlights – see the whole post: “Look at your medical record. [...]
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