This series of requests is usually about finding a good online patient group, but what the heck, why not this?
A heart patient named Chris from Long Island contacted me looking for something I’ve sought myself: a tool for organizing one’s records. I hope everyone who helped me with that last summer will be tolerant of my weak memory if I forget to mention theirs – my needs ended suddenly mid-search and I never got around to finishing the hunt. So here we are. This time we’ll record it in the comments!
Chris has hypertrophic cardiomyopathy, the enlarged heart-muscle condition that Hugo Campos has made famous. He’s never heard of Hugo, nor has he heard of the AliveCor, but he sure shares Hugo’s understandable desire to be responsible for his own well-being! That’s what we call being an empowered, engaged “e-patient.”
Here’s what he sent:
… I have been an advocate for myself insofar as I am able to try and garner information and ‘house’ my medical records for easier, access, transmittal and peace of mind. I fervently believe that this is a requisite portion of partnering with a doctor or medical teams to handle issues and provide solace.
As I had mentioned, I was diagnosed with a cardiac issue and being adopted, I never knew of my medical history. I have looked for years to find websites, apps and e-devices to scan, store, and file my medical history into one accessible hub. I simply cannot find one specific rating system or even helpful links that would provide more than a cursory glance into this technological world.
Here are the tools I know of, in alphabetical order, from past discussions:
- CareSync
- Kinergy Health (your doctor has to be a user)
- The Diary
Thoughts, all?? I know this field is advancing faster than I’ve been able to pay attention to it. Help!
Everyone in the “health 2.0” world knows that the Health 2.0 conference is the conference in the health 2.0 world. It’s where everybody has to be, if they want to be known in that high-powered innovator world. Proof got even deeper when, a couple of years ago, they shifted venue from downtown San Francisco to the belly of the beast: Silicon Valley.
It’s 6:30 to 8:30 p.m. at Hacker Lab, 1715 I Street. 
Regular readers know that a large part of my becoming a global advocate has been the vision and influence of Lucien Engelen at Radboud University Medical Center (RUMC) in the town of Nijmegen, on The Netherlands’ eastern border. Way back in 2010 he announced that his upcoming TEDx would be primarily about patients; the TED Talk I did there put my speaking career into a catapult; then he put his own money where his mouth is by launching the 
#PatientsIncluded initiative, saying he would not attend any event where patients weren’t actively encouraged to participate; and he has continued to lead in thoughts and actions, every year since (including 3D-printing my lung metastases last year, below). Lucien is the standard, the exemplar of the “pay me with action” clause of 
For that reason, when he asked me this summer to participate in something even newer – something brand new – I immediately said yes. What was it? A three day event, “Inaugural Grand Rounds,” launching a completely redesigned curriculum at RUMC – redesigned with patients participating in the process. Yes, patients – people with no medical experience – except as “the ultimate stakeholders”; as patients, helping guide how we teach students.