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 Google Alert that,when clicked,brought tears to my [...]
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 wrote,“Just had the biggest arrhythmia ever. I’m trying to recover [...]
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 doctor the data,to understand what episodes happen in Hugo’s heart,[...]
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 call to action,for patients to have access to their [...]
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 front page of Silicon Valley’s newspaper –a 900 [...]
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 also the items below …
———- Forwarded message ———- From:Joe Graedon Date:Sun,Jan 22,2012 at 5:01 [...]
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 than in the heart?
SPM member Hugo Campos (Twitter @HugoOC) [...]