by Richard G Kahn | Jul 29, 2021 |
Usually, I write from the perspective of a patient advocate diagnosed with Wolfram-like syndrome, a rare disorder of the endoplasmic reticulum that typically manifests first with optic atrophy, then insulin-dependent diabetes. For the purposes of this blog post,...
by Danny van Leeuwen | Jan 12, 2021 |
Designing clinical trials for and with people with Traumatic Brain Injury. Lynne Becker looking forward over time, not backward. Building a business. Proem You know the old story of the researcher looking for their lost keys under the streetlight when they lost them...
by Ileana Balcu | Nov 23, 2016 |
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...
by Ileana Balcu | Aug 1, 2016 |
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...
by e-Patient Dave | Mar 29, 2016 |
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,...
by Ileana Balcu | Jan 14, 2014 |
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 Casey Quinlan | Nov 22, 2013 |
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…...
by e-Patient Dave | Aug 16, 2013 |
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...
by David Harlow | May 20, 2013 |
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...
by David Harlow | Nov 30, 2012 |
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...
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