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general

Monthly introduction to e-Patients.net

This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here’s how to become a Society member, individual or corporate. Our publications: This blog is e-patients.net. Subscribe via RSS or email, tweets etc. Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM) “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible […]

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medical records, policy issues, positive patterns, pt/doc co-care

Beth Israel Deaconess FAQ for their patients reading OpenNotes

Clarification 9/7: The FAQ posted below is of course authored by my hospital, not by me. Several people misunderstood so I edited this and the headline. On Wednesday I posted about the roll-out of OpenNotes to over a million patients and families. That post arose when I myself got notified that Beth Israel Deaconess (my […]

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e-patient stories, e-pts resources, how I became an e-patient, pts as teachers

Rheumatoid Arthritis Ruined Her Elbow, But Nothing Could Break Her Hope

SPM member Kelly Young is one of the most spectacular, potent, world-changing e-patients I’ve ever seen. (See our many posts here about her activism.) Aside from all her work on RAWarrior.com and her Foundation, see how she uses this case to teach. Peer-to-peer healthcare: NOTE: Did you or someone you know participate in a clinical […]

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general

Monthly introduction to e-Patients.net

This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here’s how to become a Society member, individual or corporate. Our publications: This blog is e-patients.net. Subscribe via RSS or email, tweets etc. Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM) “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible […]

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reforming hc

“Stetho-Snopes”: MightyCasey calls for medical myth-busting

On Saturday I spotted the weekly top ten post from Snopes.com, the fabulous rumor-checking site, with the ten rumors that gave them the most activity last week. I thought “Man, I sure wish there was a site that reliable for medical information on the internet,” and posted: People often ask how patients can avoid stupid […]

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general

Patient-family advisors: “Don’t say you volunteer – say it’s pro bono”

Updated 6/4 in response to Tony’s comment, described below. I’m speaking today at the fifth annual Patient & Family Centered Care conference, hosted by PFCC Partners in Long Beach, California. (They’re not related to the similarly named IPFCC.) At today’s lunch panel, a 17 year old patient advisor named Jack, from Flagstaff, Arizona, said he got […]

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PM Tech

#S4PM #BigData Tweetchat on Wed Aug 29 – 8 PM ET / 5 PM PT

On Wed 8/29/20012 at 8 PM ET / 5 PM PT please join us for a Tweetchat hosted by SPM member Janice McCallum @janicemccallum about Big Data in Healthcare. One good way to participate is to use the website http://tweetchat.com/room/s4pm Go to the site at the right time, login with your Twitter user name and […]

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e-pts resources, news & gossip, trends & principles, Why PM

“Mind the Gap” on patient engagement: uck, “What???” and the scapegoat disconnect

Over on Mind The Gap, Steve Wilkins (Twitter) has a poster about patient engagement that annoyed me:-) right out of the box – because although I pretty much like everything he does, the poster starts with what I find to be the ouchiest mental disconnect in all of medicine today. But it quickly follows with […]

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key people

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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e-patient stories, e-pts resources, found on the net, practice variation, shared decision making

What Do ‘Engaged’ Patients Do?

Member Eve Harris wrote another great blog post for KQED – Public Media for Northern California. It is about one woman’s personal decision on how to treat her breast cancer. A short extract below: Basila is strong evidence that individuals react differently to their treatment choices. The new healthcare buzzword is the engaged patient, generally referring to […]

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