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...
by Ileana Balcu | Jun 25, 2012
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! http://blog.himss.org/2012/06/25/healthcare-it-from-the-view-of-a-worried-father/ The link inside the...
by Ileana Balcu | May 18, 2012
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...
by Kathleen O'Malley | Feb 28, 2012
The Journal of Participatory Medicine has published a narrative by Kelly Young entitled “Present, Patient, and Accounted for: How and Why Patients Are Present at Scientific Meetings of the American College of Rheumatology.” Young describes how the...
by Kathleen O'Malley | Dec 29, 2011
The Journal of Participatory Medicine has just published “The Patient Will See You Now,” a thought-provoking and rather moving narrative by John Krueger, MD. In telling his own story of becoming and maturing as a physician, the author persuasively argues...
by Kathleen O'Malley | Nov 21, 2011
Guest blogger Ken Spriggs talks about how he made sense of his medical data by creating a graphic electronic health record, the DIYEHR. [Update 11/25: the data visualization that Ken created is so extraordinary that we’re adding it here, four days after the...
by e-Patient Dave | Nov 16, 2011
Usually we talk about participatory medicine at the level of the individual care relationship, but increasingly we’re seeing the need to “Design and create a safe, decent, patient centered healthcare system.” And as we start to get real about that –...
by Kathleen O'Malley | Nov 11, 2011
This guest post by Kari Ulrich, RN, originally appeared in a fibromuscular dysplasia e-patients’ blog. The November 2011 issue of Reader’s Digest reads in big, bold print, “50 Secrets Nurses Won’t Tell You.” Articles like this create fear...
by e-Patient Dave | Oct 27, 2011
We’ve sometimes written about doctors as e-patients. (There are a lot!) Here’s the next. SPM member Howard Luks MD, orthopedist, had some symptoms. He spoke to his physician and GI doc, who gave him pills. It didn’t make sense to him. So he did what...
by John M. Grohol, Psy.D. | Oct 23, 2011
The 60 minutes interview with Steve Jobs’ biographer is an intriguing piece that gives us a few insights into Steve Jobs and his battle with pancreatic cancer. But the most disturbing part of the interview for me was watching Walter Isaacson, a former editor of...
by Kathleen O'Malley | Sep 21, 2011
The Journal of Participatory Medicine recently published a new commentary, “A Skydiver Jumps, and an Online Community Exults,” about the unexpected power of storytelling in a lung cancer support group. After sharing an uplifting story with her online...
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