by e-Patient Dave | May 28, 2012 |
Quick update before I go out and play: SPM member @AfternoonNapper just notified me that two more of us, Katherine Kelly Leon and Sharonne Hayes MD, are also on NPR today! Patients Find Each Other Online To Jump-Start Medical Research I awoke this holiday morning to a...
by e-Patient Dave | May 19, 2012 |
KQED blogger and SPM member Eve Harris has written a great brief piece on Hugo’s desire to access the data from his implanted defibrillator, beginning: Hugo Campos was apologetic about postponing a scheduled interview with me two weeks ago. In a midday email he...
by e-Patient Dave | May 10, 2012 |
SPM member Hugo Campos has had much coverage here and in the media (NPR, SF Chronicle, San Jose Mercury-News) for his desire to see the raw data coming out of his implanted defibrillator. The vendor, Medtronic, feels that its responsibility is to give Hugo’s...
by e-Patient Dave | Mar 16, 2012 |
Beyond question, the “gimme my damn data” rock star of 2012 is ICD patient Hugo Campos. (See our past posts about him, including his TEDx Cambridge talk and other media coverage.) I just learned about this well produced short version of his story and his...
by e-Patient Dave | Jan 30, 2012 |
Well, SPM’s resident ICD patient is getting quite a lot of attention these days! First a feature in MIT Technology Review in November, then his TEDx video was released this month, leading to a spot on NPR’s On The Media on 1/20, and now he’s on the...
by e-Patient Dave | Jan 22, 2012 |
Read to the end… Our man Hugo Campos (see Friday’s post) is becoming a media star! TEDx, then MIT Technology Review, now NPR’s “On The Media”! From SPM co-founder Joe Graedon, of People’s Pharmacy, on the SPM listserv – see...
by e-Patient Dave | Jan 20, 2012 |
We often say here “Gimme my damn data,” referring to our sentiment that data about our health is our data, about us, created for our well-being. And as the saying goes, “Nothing about me without me.” And where, we might ask, is that more vital...
by e-Patient Dave | Oct 6, 2012 |
I’ve often said that we won’t really be making a dent until our conversations show up in the popular culture – outside health and technology circles. Well, I just spotted a great example: yesterday Janet Gallin, host of the San Francisco talk show...
by e-Patient Dave | Jul 31, 2016 |
A large part of the Society for Participatory Medicine’s work is culture change, and that requires pointing to the cultural roots of today’s situation, so that well-meaning people today can understand how we got here, and how absurd today will look in the...
by e-Patient Dave | Jun 17, 2016 |
This may be THE most important, articulate speech I’ve seen about profound progress in patient power – and why it matters. This talk by Mark Wilson about OpenAPS, at last Friday’s DiabetesMine D-Data ExChange 2016, contains a metaphor that’s...
Epic, Using Scare Tactics & Paternalism, Opposes ONC RuleJanuary 28, 2020
Patient/caregiver letter supporting proposed HHS rules on improving flow of our dataJanuary 26, 2020
Why I Joined SPM: Brad PowerJanuary 11, 2020
Apparently Only Doctors Can Help on Twitter?December 15, 2019
“My Data and Me”: Brenda Denzler’s amazing story at #FHIRDevDaysNovember 24, 2019
Recent Comments