by e-Patient Dave | Oct 30, 2012
As noted in today’s earlier post, we’re starting a series of posts by SPM members who participated in last weekend’s PCORI workshop. Kelly Young (@RAWarrior) is one of the smartest e-patients I’ve ever seen anywhere. Aside from her technical...
by e-Patient Dave | Jun 5, 2018
Great update 20 months later: UCSF Hospital announced Jan 10, 2020 that they’ve made radiology images available through their MyChart portal, and Dr. Mark Kohli tweeted that it’s due to the speech that resulted from this blog post!  Here’s their...
by e-Patient Dave | Aug 3, 2017
I’m taking the extraordinary step of rerunning, verbatim, an entire post from 2014 about this important development. Why? Because tomorrow an update is coming, and to fully appreciate the news, you need to appreciate the background. Here’s the original,...
by e-Patient Dave | Feb 11, 2015
This is a great week for SPM, for our colleagues at the Stanford Medicine X conference, and for everyone else who’s been working for years to shift medicine’s thinking about the role of the patient: Yesterday the BMJ (formerly British Medical Journal)...
by e-Patient Dave | Jul 15, 2014
I’m saddened (really saddened, as I write this) to report that one of the titans of our movement, Jessie Gruman, died unexpectedly yesterday at home in New York. She had long been sick, but the demise was sudden. In addition to the mountain of work she produced...
by e-Patient Dave | Mar 5, 2014
Significantly expanded, below the video, an hour after the first post. Peter Frishauf, member of the editorial board of our journal, has brought what is to me the most exciting news for participatory medicine since the OpenNotes project. Importantly, this news may...
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 e-Patient Dave | Oct 30, 2012
All: I’d like to collect a list of all blog posts about this PCORI weekend, from SPM members (our Society) and anyone else. Please write to blog@participatorymedicine.org, and disregard the auto-reply that you’ll get. __________________Â This post started...
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 Jessie Gruman | Jun 16, 2011
RA Warrior Kelly Young inquires in a post on Dr. Howard J. Luks’ blog. Dr. Bryan Vartebedian of 33 Charts adds his answer in a post on Better Health. What do you think: Are there lines that patients shouldn’t cross?
by e-Patient Dave | Dec 1, 2010
Social media brings unexpected connections, which lets us combine thoughts and forces. This summer we connected with “Rheumatoid Arthritis Warrior” Kelly Young (see her great post here, Learning to use my mother-of-a-patient voice), which led to being...
by e-Patient Dave | Sep 17, 2010
One of the essential enablers of participatory medicine is that the internet brings patients together with information and with each other. Sometimes those connections seem improbable, such as when an acute cancer patient finds much in common with patients who have a...
by Eric Bersh | Feb 14, 2023
Throughout my time as a psychotherapist specializing in end of life diseases, primarily cancer, I have spent many hours talking with both patients and medical teams about the importance of authentic communication and end of life planning. I see this kind of planning...
by e-Patient Dave | Jan 26, 2020
Many people are asking if they can add their stories or their signatures. Please do so in comments! We’ll copy signatures into the body of the post as time allows. We, the undersigned, are patients, family caregivers and advocates who are desperate to receive...
by Susannah Fox | Mar 6, 2008
The Health 2.0 conference was an opportunity to learn about an amazing array of emerging technologies and, for me, to connect them to a bigger vision of what’s happened and what’s next. Here is the text of my remarks, annotated with as many links as I can...
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