Society for Participatory Medicine
e-patients.net blog
trends & principles
general, others' e-patient stories, policy issues, pt/doc co-care, pts as teachers, shared decision making, trends & principles
Angelina Jolie, BRCA1, Public Health, Patent Law — & the Empowered Patient
Going public recently with her story of a prophylactic double mastectomy after testing positive for BRCA1 (a gene linked to breast cancer) via an op-ed piece in the New York Times, Angelina Jolie is clearly trying to get the message out that radical choices must sometimes be made in order to increase one’s chances of [...]
Read Moree-pts resources, general, research issues, trends & principles
The FDA Patient Network Website – Patient-Centeredness that Walks the Walk
The FDA launched an impressive patient network website this month, after nearly four years of research, focus groups, usability testing and more. The twin goals for this website are promoting the educational mission of the FDA, and promoting opportunities for patient advocacy within the FDA — and earlier in the policymaking process than has been the [...]
Read Morereforming hc, trends & principles
Massively Open Online Medicine: Bad Idea or Just Before Its Time?
The new darling of the online educational community is Massively Open Online Courses (MOOCs). The example which figures most prominently in the popular imagination is the Khan Academy, though its founder says otherwise, noting that MOOCs are merely online transplantations of traditional courses, while Khan Academy offers something different. Others would take issue with his [...]
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 Morepositive patterns, trends & principles
“My Health Counts: e-Patients” to premier on WNED!
This is the big update to our preview post last November. There’s a stage in a movement where it starts to get serious media coverage, and ours is coming of age. We’ve documented the progress: 2009: Susannah Fox was on NPR’s Morning Edition: Participatory medicine and health data rights on NPR 2010: Time reported on SPM [...]
Read Moree-patient stories, found on the net, news & gossip, positive patterns, reforming hc, research issues, trends & principles
Health Affairs Patient Engagement Edition – with videos and commentary
The Health Affairs February 2013 issue is titled “New Era of Patient Engagement” and the content matches the title. Nick Dawson describes the day in his blog post Health Affairs is the new shirtless dancing guy Here’s a short extract from the blog post. It’s worth reading, it has other interesting tidbits. The briefing was [...]
Read Moretrends & principles
Closed systems collapse, open ones thrive: the Health Design Challenge
Next guest post by SPM member and former health system executive @NickDawson. Ilya Prigogine received in the Nobel Prize in Chemistry in 1977. His work largely focused on Non-equilibrium thermodynamics. What he found is as fascinating for scientists and non-scientists alike. It turns out, according to Prigogine, closed systems are destined to collapse or fail. Open systems, [...]
Read Moredemographics, trends & principles
Health Online 2013: survey data as vital sign
Survey data is a snapshot of a population, a moment captured in numbers, like vital signs: height, weight, temperature, blood pressure, etc. People build trend lines and watch for changes, shifting strategies as they make educated guesses about what’s going on. What’s holding steady? What’s spiking? What’s on the decline? Just as a thermometer makes [...]
Read Morenews & gossip, trends & principles
Heads up: New Pew Internet report coming out tomorrow
The report was issued overnight – see Susannah’s post here about it, media coverage (via Google), and blogs. I’m stealing some Susannah Fox thunder here because I can’t wait, and you should carve out a spot in your calendar tomorrow. Here’s her tweet just now: New @pewinternet health data tomorrow! 7am ET = full report on pewinternet.org and my blog [...]
Read Moree-pts resources, general, policy issues, positive patterns, reforming hc, trends & principles
New Hospital Safety Score data: a key enabler for informed choice
The PDF at right is a summary of sample data from this new dataset. The Leapfrog Group is a highly respected patient safety organization. They’ve earned a reputation for carefully and thoughtfully assessing providers’ actual performance in quality and safety. Their mission statement: To trigger giant leaps forward in the safety, quality and affordability of health [...]
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