e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Time trip: “Participant-Entrepreneurs: Innovating Toward Better Health” (May 2010)
Susannah Fox's post about this two years ago pretty much went over my head: I didn't get how important it was. But at this month's White House conference on patient-generated data, I met Nikolai Kirienko, who was the central specimen in her post. The start:...
Eve Harris reviews Joe and Teresa Graedon’s book
Thanks to member Eve Harris that pointed our her review of Joe and Teresa Graedon's 2011 book "Top Screwups Doctors Make and How to Avoid Them". From Eve: My blogpost " Better Care, Fewer Worries" links to the SPM monthly intro this way: "I'd like to teach every...
The government seeks patient voices again – this time about info WE put in the record
Shortcut: to respond to this Federal request, go to this post on the government's blog. Update 9 a.m. 6/19: Josh Seidman, author of this post, says there's no specific deadline; these comments will feed into HITPC )the Health IT Policy Committee), which deliberates as...
Regina Holliday announces “Partnership WITH Patients” conference
Yesterday, in an email to our Society's membership, Regina Holliday announced an amazing event that will happen as summer ends. It arose out of an episode with the "Partnership For Patients" program, whose title many of us felt revealed a too-paternalistic attitude....
Who owns your data? Why?
I've received an interesting request: Women Executives in Healthcare, a Hartford professional organization, will hold a meeting this fall themed around "Who owns your data?" And they asked, what are patients' top five issues? Of course I have plenty of opinions, but...
Watson: a love story
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...
Unpacking self-tracking
I tweeted a stat this week which garnered some sharp critiques: 1 in 4 U.S. internet users track their own health data online - @pewinternet pewrsr.ch/khtiMB #healthdata — SusannahFox (@SusannahFox) June 5, 2012 Please help me improve how Pew Internet measures...
SPM Rolls Out Participatory Seal Program
At Health Datapalooza today in Washington, DC, the Society for Participatory Medicine announced the live beta launch of our Seal Program. The SPM Seal will be awarded to clinicians and to patients who make four simple, achievable, but powerful participatory...
ONC Meeting with Patients at the White House
Member Keith Boone about the meeting at the White House with ONC and Regina Holliday, e-Patient Dave and others: http://motorcycleguy.blogspot.com/2012/06/secret-white-house-meetings-with.html Discussions were about giving data to patients, security, privacy,...
Monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine
This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here's how to become a Society member, individual or corporate. Our publications: This blog...
Nancy Finn: Are You Getting What You Paid For and Is It Worth the Money?
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...
A powerful e-patient story – parents search for what ails their son
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:...
