how I became an e-patient


e-patient stories, how I became an e-patient, net-friendly docs, positive patterns, pt/doc co-care

Thanksgiving Letter to my Doctor

Coming from Romania 15 years ago, Thanksgiving was not a big thing for me. I didn’t quite grasp the holiday. My husband cooked and celebrated, and I helped and observed it in a detached way. 11 years ago, it was the Wednesday before Thanksgiving. I was 22 weeks pregnant; I was waiting for a test […]

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e-patient stories, general, how I became an e-patient, patient networks, positive patterns, pts as teachers, social media

Cleo Kordomenos: How My Opinion on Online Health Communities Changed

This is a guest blog post by Cleo Kordomenos. Cleo was my student in the New Media and Health Communication class I taught at TCNJ. More about the class is shared in this post.  Cleo Kordomenos is a Senior Communication Studies student at The College of New Jersey with a concentration in Health Communication and a […]

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e-patient stories, how I became an e-patient, Why I joined

How I became an e-patient: through practice, with coaching (using Lean on the patient side)

The next in our series of “How I became an e-patient” posts. Tyson Ortiz joined a few months ago, having been introduced to us by fellow Lean practitioner Mark Graban. His story weaves together two concurrent threads: learning about a new aspect of Lean, and the arrival in his life of an urgent need for […]

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e-patient stories, end of life, ethics, how I became an e-patient, key people, patient networks, pts as teachers, social media

e-Patient Lisa Adams

In this guest blog post, member Carly Medosch describes Lisa Adams whom she knows from social media. Lisa Adams was diagnosed with stage 4 breast cancer and documented her journey in social media. In another post below we describe the media firestorm that was caused by two articles that criticized her efforts. A hashtag was […]

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e-patient stories, how I became an e-patient, key people, patient networks, pts as teachers, social media

Regina Holliday: The Walking Gallery film

Regina Holliday and her Walking Gallery project are featured in a new short film. Here it is: The Walking Gallery of Healthcare from Eidolon Films on Vimeo. How a movement begins…

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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 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, how I became an e-patient, 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 […]

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e-patient stories, how I became an e-patient, key people, medical records, news & gossip, 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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e-patient stories, found on the net, how I became an e-patient

A patient story: HIMSS’ Adam Bazer on IT from a patient’s perspective

From the HIMSS Blog, Adam Bazer with a personal health story where even in a great hospitals the IT is not as connected as can be. We wish your son Ari well, Adam! The link inside the post about another patient story with Jonathan Atler needs username/password for HIMSS virtual conference.

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e-patient stories, end of life, how I became an e-patient, pts as teachers

HIT Journalist becomes patient advocate after seeing the danger of uncoordinated care and poorly designed workflows

Neil Versel, a HIT journalist, relates a very touching story of his father’s care at two different hospitals: one was uncoordinated and prone to errors and near misses, another one was quite a good experience. Unfortunately Neil’s father had a rare poorly known disease (MSA) and he died from it. The whole story with details is here: […]

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