e-Patient Dave

December 4, 2015 By e-Patient Dave Leave a Comment

“Let patients help reinvent radiology” (my first Periscoped speech)

Tuesday night in Chicago I gave a 28 minute talk for Philips customers at the huge (56,000 people) radiology conference, RSNA. The leading-edge social media guy at Philips, Noah Harpster (@PhilipsLiveFrom), broadcast it live using the free Periscope live-streaming app (owned by Twitter), and boom, here’s the archive. Unpolished, raw, live. Free. (Email subscribers, if you can’t see the videos below, click here to view the post online.)

This is the first time I’ve spoken to radiologists. This talk has very little about my cancer story, and a lot about the impact on professionals of two things:

When assets digitize, things change fast
Information makes new things possible

I also pulled out some props – including a 3D printout I had done locally of my lungs (my bronchi and metastases). I told you that when things digitize, new stuff becomes possible.

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December 3, 2015 By e-Patient Dave 16 Comments

Screw you, Facebook. And your ignorant “real names” policy. I’m outahere.

Facebook has become a bunch of ignorant d*cks lately, and the missing letter is not “u.” I’ve had enough.

I awoke Wednesday to find that my FB account had been locked out – I couldn’t sign in until I prove that I am who I say. Right: like who thinks I’m not actually what my Facebook page has always said, “e-Patient Dave” deBronkart?

Then that night, talking to my wife, I discovered (see image) that my whole Facebook page has been taken down, until I stop this fraud and prove I’m really the guy who calls himself “e-Patient Dave”!

You see, since last year Facebook has been running this giant anti-fraud, anti-bullying project called their “real names” policy. Noble idea, but it’s so poorly implemented that there’s a Wikipedia page about it, including this:
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December 2, 2015 By e-Patient Dave 5 Comments

Washington Post and that viral coffee mug: two important posts on the e-patient blog

Google doctor mug — Photo: facebook.com/TheEmergencyMedicineDoctor

A quick note to draw your attention to two posts this week.

First, the coffee mug at right has gone crazy viral on Facebook, with over 100,000 shares in the first few days. It’s a great big mudpuddle splash, smack into the changing e-patient reality compared to how many doctors were trained. Yes, there’s junk on the internet and some people (including some patients) are loco. That does not mean patients should just shut up and expect the doctor to know everything. So, on the e-patient blog I posted this explanation:

The truth about that “your Googling and my medical degree” mug

Second, yesterday’s Washington Post had a great, well researched and comprehensive piece about medicine listening to patients. Reporter Susan Allard Levingston interviewed and cited many people I know and several I don’t, including my doctor Danny Sands, Mayo’s Victor Montori, ACOR, SmartPatients, Inspire.com, PatientsLikeMe, the BMJ’s patient partnership program that I’m a part of, and more. My post about it:

Washington Post nails it about patient-clinician partnership

The timing of this clash couldn’t have been more perfect to illustrate the topic of my Grand Rounds as Visiting Professor at the Mayo Clinic last March: We are at the cusp of a profound paradigm change in medicine.

The whole concept of what “patient” can be and do is evolving – but most people don’t know it. Many patients and many docs think patients couldn’t possibly know anything useful; that is no longer the case, and culture clash is happening.

Honestly, this is the work of evangelism – spreading the word, making the case. And you know people are starting to notice when “the empire strikes back,” as illustrated by that coffee mug piece.

Please:

If you don’t yet know about the Belgian health department’s anti-googling campaign (taxpayer-funded!), and you don’t yet know about the British teen who died because her docs told her to stop googling, go read that coffee mug piece. Then read the comments from patients who helped their docs make a correct diagnosis. Then skip over to the Washington Post piece, and read about “the real reality.”

And spread the word! Culture change only succeeds when people spread the word. Thank you!

November 22, 2015 By e-Patient Dave 9 Comments

e-Patient Request: software (or anything) to organize one’s records?

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!

October 24, 2015 By e-Patient Dave 2 Comments

Speaker Academy #26: To hone your skills, eight great TED Talks

Screen grab of TED public speaking playlist — Before public speaking…
If you’ve got a presentation to give at work or school — or are perhaps getting ready to speak at a TEDx event? — we recommend these talks to help get you pumped up.

Thanks to college near-classmate (a year behind) Larry Fagan MD for this, which was in turn pointed out to him by one of his students, Sarah Aerni. (I met Larry for the first time last month at the Stanford Medicine X conference!)

All told these will take 80 minutes. If you’re not willing to spend that on being a better speaker, you’re not a cadet. :) The roster of talks:

Julian Treasure: How to speak so that people want to listen A whole lot of practical skill in these ten minutes. (If you don’t care about “so people want to listen,” you haven’t been paying attention to this series.)
Amy Cuddy: Your body language shapes who you are. Guaranteed to make you laugh and think.
Joe Kowan: How I beat stage fright
Melissa Marshall: Talk nerdy to me <=oo, I haven’t even watched this (as I write, here) and I’m already in love
Simon Sinek: How great leaders inspire action <= he spoke at the TEDx where I did
Sebastian Wernicke: Lies, damned lies and statistics (about TEDTalks) <= I used Sebastian’s thinking in planning my talk
Megan Washington: Why I live in mortal dread of public speaking
Clint Smith: The danger of silence – a five minute talk with 263 comments. Why?? Pay attention and think.

Enjoy, and learn.

This is the latest in the Speaker Academy series, which started here.

Next in the series: #27: Impact speakers! Get the “Official TED Guide” to speaking