Society for Participatory Medicine
e-patients.net blog
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key people, maternity
Mother’s Day
We have posted many stories featuring mothers over the years. In celebration of Mother’s Day, a compilation: A Lifetime of Participatory Medicine Can Start With Maternity Care Through the Land of Smoke and Mirrors: An e-Patient’s Odyssey (“Mama Lion” part one) Great news from “Mama Lion” Engelman and daughter (“Mama Lion” part two) The Unwilling [...]
Read Moree-patient stories, e-pts resources, key people, patient networks, social media
How Things Change
SPM member Jody Schoger’s post “Cancer: Part Two” at her blog Women with Cancer landed with a big thud on April 26. Schoger was recently diagnosed with metastatic breast cancer. She’s a co-founder of #bcsm (breast cancer social media), one of the highest rated Tweetchats with almost 6,000 tweets per month. In less than two years the group has gained [...]
Read Moregeneral, key people, medical records, PM Tech, policy issues, pt/doc co-care, reforming hc
SPM Response to ONC RFI on Advancing Interoperability of EHRs and HIE
With the tireless help of Adrian Gropper, and the counsel of executive committee members Michael Millenson and Danny Sands who went above and beyond, and our President Sarah Krüg, the Society for Participatory Medicine’s Public Policy Committee completed a last-minute blitz and submitted comments in response to the Office of the National Coordinator for Health [...]
Read Morekey people, medical records, trends & principles
Anniversary of a health data earthquake
Four years ago this week, e-Patient Dave published, “Imagine someone had been managing your data, and then you looked,” and forever changed the national conversation about health data. I have described that post as an earthquake — a surprise to those who were not looking for signs and indicators of trouble, not a surprise to [...]
Read Morefound on the net, key people, social media
HIMSS blog featured e-Patient Dave
The HIMSS blog features e-Patient Dave, the 5 Es of e-Patients and how social media can help. http://blog.himss.org/2013/01/25/part-1-value-of-social-media-in-healthcare-is-already-outlined-just-not-realized/ For whatever reason – whether it’s budget, time, buy-in or understanding – healthcare hasn’t fully embraced social media. But luckily the ePatient movement has already—perhaps unknowingly—done the grunt work and outlined the tenets of realizing social media’s [...]
Read Moregeneral, key people, news & gossip, positive patterns, pt/doc co-care, research issues, shared decision making
“The Patient as Partner” in Medical Research at Radboud University
This encouraging news is adapted from the November cover story of Radboud University’s magazine Radbode (PDF, in Dutch, 1.6MB). Thanks to @LucienEngelen, initiator of this project, for forwarding it to us. Not surprisingly, Lucien’s also the creator of the heavily patient-centric Future of Health conferences, which started with TEDx Maastricht 2011. Editorial note: I heavily edited [...]
Read Moree-patient stories, e-pts resources, hc's problem list, key people, policy issues
Top 5 Posts of 2012
I was curious to see which were the top 5 posts, traffic-wise, and figured readers might be interested, too. Here’s the line-up: #1: Open knowledge saves lives. Oppose H.R. 3699! by Gilles Frydman The e-patients.net post with the highest number of views is a clear call to action in favor of open access to research. [...]
Read Moree-patient stories, key people, medical records, news & gossip, others' e-patient stories, PM Tech, policy issues
When is patient data not patient data? When a patient wants his or her ICD data
The latest news story to examine the issue of patient access to implantable cardiac defibrillator data (a variation on the theme of “gimme my damn data”) is an in-depth, Page One Wall Street Journal story featuring Society for Participatory Medicine members Amanda Hubbard and Hugo Campos. They have garnered attention in the past – one [...]
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Wall Street Journal – Heart Gadgets Test Privacy-Law Limits
Our members Hugo Campos and Amanda Hubbard featured in this great piece in the Wall Street Journal Heart Gadgets Test Privacy-Law Limits http://online.wsj.com/article/SB10001424052970203937004578078820874744076.html?mod=WSJ_hpp_LEFTTopStories Very extensive and well documented article. A short extract At her checkup, diagnostic tests detected a problem: The electrode attached to her heart had become dislodged. Dr. Saavedra says there was a [...]
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XX in Health: Women Leading Healthcare
Here’s a video that had me at hello — it leads with data, then follows with insights from people I admire: If you’re intrigued, look for other posts about women in healthcare on Twitter by searching for the hashtag #xxinhealth. And for more wisdom from women in healthcare, check out: Wendy Sue Swanson Eve Harris [...]
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