Society for Participatory Medicine
e-patients.net blog
key people
end of life, general, key people, news & gossip, others' e-patient stories
Steve Jobs’ Cancer Denial
The 60 minutes interview with Steve Jobs’ biographer is an intriguing piece that gives us a few insights into Steve Jobs and his battle with pancreatic cancer. But the most disturbing part of the interview for me was watching Walter Isaacson, a former editor of TIME Magazine, talk about how Jobs was in complete denial [...]
Read Moregeneral, key people, policy issues, pt/doc co-care, reforming hc, trends & principles
Lab Results for All! Of Data Liberation, Participatory Medicine, and Government 2.0
On September 14, HHS released for comment draft lab results regulations that will, if finalized, effectively bathe the Achilles’ heel of health data in the River Styx of ¡data liberación! Lab results will be made available to patients, just like all other health data. (See the HHS presser and YouTube video from the consumer health [...]
Read Moregeneral, key people, medical records, positive patterns
What I learned at Health Foo
Just in case anyone is curious: my notes from Health Foo, a meeting held last weekend in Cambridge, MA. It’s long, so skim for the 9 lessons if you want a shortcut.
Read Morefound on the net, key people, social media
What happens when you ask Atul Gawande to join a Twitter discussion of his work?
Awesome short post by Twitter buddy AnneMarie Cunningham (Twitter @AMCunningham), a GP in Cardiff, UK. The post starts like this: “On Sunday afternoon I spotted Atul Gawande tweeting whilst watching the Wimbledon final… I thought I would let him know that in a few hours time we would be discussing his paper in the Twitter journal [...]
Read Morekey people, news & gossip, policy issues
“Father Knows Best”: Vint Cerf on what innovation really is
For those who like to look deep into the structure and causes of change, something fun is in process: an interview with Vint Cerf, with an explicit e-patient component. Cerf is acknowledged as one of the fathers of the internet. In my lifetime few people, if any, have contributed more to ground-breaking, earth-shaking change. The interview [...]
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Regina paints Susannah’s jacket; Susannah replies
On the evening of June 7th, SPM member and extraordinary painter Regina Holliday is leading a “Walking Gallery” in Washington, in which dozens of us will wear jackets on which she’s painted one of her visual allegories about healthcare today. She and, I think, seven other artists are doing original paintings on jackets mailed in [...]
Read Moregeneral, key people, medical records, policy issues, reforming hc
Society for Participatory Medicine Comments on ONC Federal Health IT Strategic Plan 2011-2015
We e-patients are an impatient lot, and therefore we may not be big fans of the Five-Year Plan approach to creating change. The Office of the National Coordinator for Health IT released a draft federal health IT strategic plan in late March, via blog post (the plan itself is linked to from the post; a [...]
Read Morefound on the net, general, key people, positive patterns
IHI names patient activist Dale Ann Micalizzi as 2011 co-chair
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 and 10,000 more watching via satellite downlink at viewing centers around the world. In [...]
Read Morekey people, policy issues, reforming hc, trends & principles, Why PM
Patient Experience of Care: Measuring and Incentivizing High Performance
There is a growing recognition within the medical-industrial complex that the patient is a key element of the enterprise, and that patient satisfaction, patient experience, patient engagement, patient activation, patient-centeredness are very important. Some research shows that patient activation yields better patient outcomes, and that patient activation can be measured. Patient-centeredness and patient engagement are [...]
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Who *are* those guys? (Matt Wiggins and Remedy Systems)
How many times have you been at a conference, listening to some panel, when all of a sudden someone says something that snaps you out of your stupor and you think, “Who *is* that guy?” (And if you’re lucky enough to remember Butch Cassidy and the Sundance Kid, please enjoy the following rendition of that [...]
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