by Susannah Fox | Feb 9, 2013
For over a year I’ve been the accidental manager of a community garden. All I did — I swear — is point out an open plot of land and people started pitching in, planting, asking friends to join them. All of a sudden we’d transformed a bare patch...
by e-Patient Dave | Feb 6, 2013
Major typo fix, 3:23pm – “they’re giving” is not same as “they’re given”! Sorry. This note arrived today from the Institute of Medicine. I’m in DC at the moment, at a big briefing by the Health Affairs policy journal...
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 18, 2013
SPM member Marge Benham-Hutchins (see her December post) spotted this item. It’s a vital point for patient and family awareness, leading to patient engagement – patients as responsible drivers of their health. I added the italics below. From a recent...
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 Danny van Leeuwen | Nov 19, 2012
Danny van Leeuwen, Opa MPH RN CPHQ is a patient (Multiple Sclerosis), a caregiver, a nurse, and a leader. A version of this piece originally appeared on his blog, Health Hats. What do we e-Patients need in our electronic health records? Help by sharing in the...
by Kathleen O'Malley | Sep 26, 2012
Guest blogger Marya Zilberberg is the author of Between the Lines: Finding the Truth in Medical Literature. She originally posted this piece on her blog Healthcare, etc. I have been looking up information on endometriosis for a friend of mine, and came upon this from...
by Susannah Fox | Sep 7, 2012
I witnessed an intriguing Twitter conversation between Christy Collins and Greg Biggers about disease names, so I asked Christy to write up her thoughts. It is an honor to host this guest post: By Christy Collins When I started an advocacy and research organization...
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 31, 2012
As noted a few days ago, I’ve been at the ABIM Foundation Forum. This is, frankly, the most heartening event I’ve been to: the Foundation people are working hard to generate real transformation in the practice of medicine, including the new Choosing Wisely...
by Kathleen O'Malley | Jul 5, 2012
This guest post by Idelle Davidson originally appeared in the Huffington Post as “ASCO, Where Have You Been? The organization that sets standards for cancer care does not include cognitive issues in their patient consent document.” Last month, I was in Arlington, Va....
by Susannah Fox | Jun 11, 2012
Before you read this post, think of a time when you had a crush on someone. Think about that swirl of emotions, the highs and the lows. That’s where I was a couple weeks ago, except it wasn’t about a person. I fell hard for Watson, IBM’s hot new outboard brain. I’d...
by Kathleen O'Malley | Jun 1, 2012
SPM member Nancy B. Finn shares some recent research findings that confirm what many of us suspected about the value patients get out of health care in the U.S. When we go to the supermarket or the store to make a purchase, most of us are concerned about getting what...
by Kathleen O'Malley | Apr 26, 2012
SPM member Ken Farbstein sent us this invitation to help persuade the Office of the National Coordinator for Health Information Technology to include printed summaries of doctor visits in the ONC’s definition of meaningful use. After our pets go to the...
by e-Patient Dave | Apr 19, 2012
What news to wake up to – SPM’s “resident artist” Regina Holliday is in Newsweek. It’s not a happy story – nothing about her story is – but it’s good to see such things getting the visibility they deserve. The article,...
by e-Patient Dave | Apr 11, 2012
Correction 4/12: I’m glad to say that there are in fact several patient speakers at TEDMED. There was a massive communication disconnect in the months leading up to this TEDMED, leading to my impression that there were no patient speakers; I hope to find out how...
by Kathleen O'Malley | Mar 28, 2012
Guest blogger, e-patient and SPM member Nancy Finn takes on the tough topic of how to reduce the cost of health care delivery. With all the talk this week about Obamacare and whether or not the Supreme Court will declare the law constitutional, partially...
by Susannah Fox | Feb 3, 2012
#whatifhc in #TheWalkingGallery Note: This is two posts in one — scroll down to read Regina Holliday’s point of view. From Susannah Fox: For me, Twitter is a free-wheeling space where people dance with ideas. Anyone is welcome to jump into...
by e-Patient Dave | Jan 24, 2012
Another potent guest post by SPM member Alexandra Albin, @MsAxolotl. If this doesn’t give you a sense of who is “the ultimate stakeholder” in health matters, nothing will. Remember, “patient” is not a third person word. Your time will...
by e-Patient Dave | Jan 7, 2012
We often note here that quality improvement in hospitals seems excruciatingly slow to happen, and engaged patients and families need to keep their eyes wide open, because sometimes a fix doesn’t require being a genius. For instance, see the cartoon at right...
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