Society for Participatory Medicine
e-patients.net blog
medical records, policy issues, pt/doc co-care, Why PM
Hm: Because of viewing my visit notes, I did something better.
Earlier this month I wrote that the OpenNotes project had kicked off. It’s important – if you haven’t read about it, please click that link. My primary physician and I are participating, but candidly I didn’t expect to get much out of it: as I told a friend, “I’m not sick!” Yet, the very first [...]
Read Moregeneral, understanding statistics, Why PM
“You’re 100% alive or 100% dead at any given moment”
A recurring training topic on this blog, originally for e-patients but also for clinicians and policy people, is understanding statistics. (See posts in that category.) Not only are statistics often misinterpreted; even when they’re correctly understood, patients too often interpret a slim chance as no chance. During my illness I heard from a long-ago co-worker. [...]
Read Morefound on the net
National Library of Medicine’s ePatient Conference
The e-patient movement is so real that in April the National Library of Medicine had its first ePatient Conference. Yes, that’s what they called it. The event is covered on the inside front cover of the current Medline Plus, including Society co-chair e-Patient Dave. More info on Dave’s blog.
Read Moree-patient stories, others' e-patient stories, Why PM
Paul Roemer’s e-patient story: Cancer, who’s in charge here?
Paul Roemer (LinkedIn, Twitter ) is speaking this Thursday at Health 2.0 in Bethesda. He’s a Twitter friend who has a lot in common with me: a cancer kicker with a business background, who now sees himself as an e-patient. There’s one big difference: he went through his first major medical experience years before I [...]
Read Moree-pts resources, patient networks
Patient Communities… at Walgreens?
In May, I spoke at the Chronic Care and Prevention Congress about my most recent report, “Chronic Disease and the Internet.” I talked about the social life of health information and the internet’s power to connect people with information and with each other. Living with chronic disease is associated with being offline – no surprise. [...]
Read Moreresearch issues
Health Geek Tip: Abstracts are ads. Read full studies when you can.
Ivan Oransky, executive editor of Reuters Health, provided excellent evidence yesterday regarding the need to look past abstracts of journal articles if accuracy matters to you:
Read Morefound on the net, medical records, policy issues, reforming hc, trends & principles
OpenNotes background information: WIHI webcast and Ted Eytan post
It’s bonanza time for people intrigued with the OpenNotes project, which we mentioned Saturday. While looking for something else tonight, I ran across this, about OpenNotes, from December: “Concern that sharing information with patients may cause sustained psychological distress is probably unfounded.” It cross-posts a great piece by Ted Eytan MD and cites a December [...]
Read Moremedical records, news & gossip, policy issues, reforming hc, trends & principles
“Over My Dead Body”: Why System Usability Matters
It’s widely rumored that a health IT industry executive was unhappy about suggestions that systems have to be usable in the eyes of employees who use them while caring for us. (Us. The patients. Your mother.) According to the rumor, the exec said “Over my dead body.” As if s/he ran the agency. Whether or [...]
Read Moree-pts resources, policy issues, trends & principles
Innovators speak up! How should we rename “Community Health Data Initiative”?
Todd Park is the “entrepreneur in residence” (aka Chief Technical Officer) for the US Department of Health & Human Services (HHS). He’s an awesome (and I mean it) speaker, articulate and inspiring. Watch his 9:39 talk at O’Reilly’s “Gov 2.0 Expo” conference last month:
Read Moregeneral, medical records, policy issues, positive patterns, pt/doc co-care, trends & principles
“OpenNotes” project begins: what happens when patients can see the physician’s visit notes?
The opening anecdote of the e-patient white paper tells of a patient who impersonated a doctor in 1994, to get his hands on an article about an operation he was about to have. He got busted. Two years later episode 139 of Seinfeld had something similar – Kramer impersonates a doctor to try to get [...]
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