Society for Participatory Medicine
e-patients.net blog
found on the net
Living N=1
If you haven’t listened to the Patient Voices series on The New York Times site, let me be the first to recommend it. I spend quite a bit of time writing up survey data, working with moderately large respondent pools (N=2,253 is the number of people who completed my last health survey; N=609 is the [...]
Read Morepatient networks
Patient Communities: Which Way Forward?
If you were designing a disease treatment system from scratch, bringing together clinicians, patients, researchers, and advocates, what platform would you use to take advantage of the community created by this umbrella group? This isn’t just some health geek SimCity exercise. I was actually asked that question recently, by people who have lined up the [...]
Read Moree-pts resources, medical records, policy issues, pt/doc co-care, Why PM
Reflections after a specialist visit *without* OpenNotes
Next in our series on my experience with OpenNotes, a project sponsored by the Robert Wood Johnson Foundation’s Pioneer Portfolio. This item has nothing to do with OpenNotes itself – it’s what I’m seeing now that I’ve started accessing my doctor’s notes. In short, I see the clinical impact of not viewing my record as [...]
Read Morepositive patterns, pt/doc co-care, reforming hc, research issues, understanding statistics, Why PM
Must-hear: four Journal of Participatory Medicine contributors discuss how we know what we know
Last night I got word of an unexpected treat: an hour-long conversation between some real experts about participatory medicine. It’s on Andrew Schorr’s Patient Power site – he and his team are powerhouses as well, and they produced a special hour-long audio program. I encourage you to start playing it like a radio program, as [...]
Read Morekey people, net-friendly docs, pt/doc co-care, Why PM
Blowing your mind with Doc Tom’s seven laws of self care
Regular readers know that our founder, “Doc Tom” Ferguson, was an absolute visionary who saw that patients have a much bigger role in their own health than most people realize – at least in our culture. The white paper at top right of this site is the culmination of his life’s thinking. Through some obsessive [...]
Read Morekey people, net-friendly docs, positive patterns, pt/doc co-care, reforming hc, Why I joined, Why PM
Why Victor Montori joined the Society for Participatory Medicine
Next in our “Why I Joined” series is Victor Montori, MD of the Mayo Clinic. My wife and I met him in May; he’s high energy, with boundless optimism. And as you’ll see, he feels very strongly about patients being at the center of healthcare. The civil rights movement has not finished its job. In [...]
Read Morefound on the net, positive patterns, reforming hc, trends & principles
We’re quoted in PBS Newshour online
Our Susannah Fox (and her research) are quoted in a piece yesterday on PBS Newshour’s online edition about the HealthCare.gov insurance research site. There’s also a small quote from me.
Read Moree-pts resources, pt/doc co-care, research issues, Why PM
Essential e-patient topic: understanding the challenges of pathology and diagnosis
Two posts have brought into wrenching relief one of the more difficult topics I’ve encountered in healthcare: the challenge of understanding diagnosis, especially when difficult pathology is involved. It started with When a biopsy cannot completely rule out cancer, a post by pathologist Jeffrey Sparks on the KevinMD blog. Separately, Every Patient’s Advocate Trisha Torrey [...]
Read Morekey people, medical records
“Give Us Our Dammed Data” – Regina Holliday
17 authors with weapons in hand stare down upon the viewer. The three panel painting measures 60 inches by 144 inches. It is a very large painting, and yet it is crowded with those who have been hurt and those who have suffered. Every one of them is an author. Nearly everyone in the painting [...]
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