by Ileana Balcu | Feb 15, 2013
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...
by Kathleen O'Malley | Feb 5, 2013
Guest blogger Cristin Lind is an e-caregiver and e-patient; her personal blog is called Durga’s Toolbox. When trying to find a definition for what real patient- or family-centered care looks like, I can easily to get caught up in inspirational jargon. But a...
by e-Patient Dave | Jan 27, 2013
Guest post by Elaine Waples, one of our new (today) members of SPM (with her husband Brian Klepper). This story illustrates one of the core dysfunctions in American medicine today – lack of coordination – and makes a compelling case for patients and...
by e-Patient Dave | Jan 17, 2013
It’s less common today but people used to think empowered patients were anti-doctor. One part of our response on this blog was to point out the many clinicians who are e-patients themselves, as in Let’s hear it for the d-patient e-patients (with dozens of...
by e-Patient Dave | Dec 31, 2012
Some things are what they call “evergreen” – persistent value, never out of date. Two come together for this year-end post. __________ A lot’s changed since our society was formed in 2009, but year after year a core skill for participatory...
by Susannah Fox | Dec 28, 2012
I was curious to see which were the top 5 posts, traffic-wise, and figured readers might be interested, too. Here’s the line-up: #1: Open knowledge saves lives. Oppose H.R. 3699! by Gilles Frydman The e-patients.net post with the highest number of views is a...
by e-Patient Dave | Dec 4, 2012
A guest post by SPM member Marge Benham-Hutchins, PhD, RN, an assistant professor of nursing informatics at Texas Woman’s University. This is an email she sent me today, citing an online discussion of the appalling death in the Health Affairs column...
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 | Nov 29, 2012
Our members Hugo Campos and Amanda Hubbard featured in this great piece in the Wall Street Journal Heart Gadgets Test Privacy-Law Limits http://online.wsj.com/article/SB10001424052970203937004578078820874744076.html?mod=WSJ_hpp_LEFTTopStories Very extensive and well...
by Kathleen O'Malley | Sep 18, 2012
Guest blogger Neel Shah, MD is the Executive Director of Costs of Care and a chief resident in obstetrics and gynecology based at Harvard Medical School. As a presidential election looms and the American economy struggles to recover, the spiraling costs of healthcare...
by Susannah Fox | Sep 5, 2012
This is a request for help finding people who have had bad experiences with online health resources. Let me first say that the internet is often a positive force in people’s lives. My own organization’s research can paint a rather rosy picture: teens are...
by Kathleen O'Malley | Aug 14, 2012
This listserv exchange between new Society for Participatory Medicine members is a nice example of how “newbie” e-patients often come to us with decades of experience and well-honed (and well-blogged) philosophies of what healthcare should be and can be....
by e-Patient Dave | Jul 25, 2012
On Monday Ileana Balcu posted about a great new article by SPM member Eve Harris, whom we’ve covered before. Eve’s post is a superb depiction of how an empowered patient – someone who knows how to think for themselves and speak up –...
by Ileana Balcu | Jul 24, 2012
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...
by Susannah Fox | Jul 19, 2012
A few weeks ago, with a combination of alarm and excitement, I realized that I would be presenting my research about rare-disease communities to a roomful, not just a row full, of actual rare-disease patients and caregivers. This was no academic exercise. It was as if...
by Ileana Balcu | Jul 3, 2012
By Michael L. Millenson The empowered patient, skeptical of professional authority, is not a new phenomenon: he was actually created by the American Revolution. Reading through historian Gordon Wood’s Pulitzer Prize-winning book, The Radicalism of the American...
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 | Jun 20, 2012
Do you have the ideal healthcare network of individuals supporting your physical, mental, emotional, and spiritual aspects? Sally Richards does. She works with hospitals, neurofibromatosis (NF) organizations, government entities and patients in what she calls “a...
by e-Patient Dave | May 31, 2012
From SPM member Gangadhar Sulkunte: This article is very powerful. How the parents had to go through genomic hell to track down which genetic ailment was killing their son. Lots of useful information on genetic disorders, gene mutations here:...
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...
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