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...
by e-Patient Dave | May 23, 2016
A truly significant moment in the history of medicine happened last Wednesday. I say that after attending almost 500 conferences and policy meetings in the past seven years, and I don’t say it lightly. Something many people think is impossible was presented live...
by e-Patient Dave | Oct 28, 2015
For whose benefit does the healthcare industry exist? For the investors, or the people whose needs are the reason for the industry? Facebook last night was celebrating a small but significant legal victory this week for the “gimme my DaM data” movement (“Data about...
by e-Patient Dave | Oct 2, 2015
Yesterday super-e-patients Regina Holliday, Michael Seres and I spoke on a webcast titled “End-to-End Patient Engagement that Drives Loyalty and Outcomes,” hosted by Liz Boehm of Vocera.com’s @EINHealth Experience Innovation Network. Frankly, we...
by Ileana Balcu | Aug 20, 2015
The site Crohnology, well known patient community for patients with IBD (Inflammatory Bowel Disease), recently started focusing their blog on explaining IBD- focused research to patients. Their most recent blog post describes a study that studied what patients with...
by e-Patient Dave | Apr 10, 2015
Perhaps it’s time for an argument about how we’re doing this. Many of us in the Society for Participatory Medicine have long noted that what we’re up to here is nothing less than full-bore culture change. In my own speeches I often note that culture...
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 | Feb 2, 2015
LADIES AND GENTS, YOUR ATTENTION PLEASE. The famous @HurtBlogger, chronic pain patient Britt Johnson, has announced that she will LIVE TWEET 48 hours of “her chronic life,” MONDAY AND TUESDAY, Feb. 2-3. She has no idea what will happen – might be...
by Nick Dawson | Dec 5, 2014
Guest post by Hugo Campos; introductory note from Society for Participatory Medicine president Nick Dawson Every movement evolves. And as a grassroots social justice movement, the Participatory Medicine Movement is also growing, changing and evolving. Something...
by e-Patient Dave | Dec 3, 2014
Edited an hour later – added Business Impact section at end Healthcare providers who are tracking patient experience and patient satisfaction, take note: a new study reported yesterday in Science Daily provides evidence that we patients really like it when we...
by e-Patient Dave | May 27, 2014
SPM member Richard Anderson @RiAnder has a lot of experience helping to found and develop another organization’s local chapters around the world. Because of a nightmare experience with the U.S. healthcare system, he has decided to work to change that system, and...
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