e-Patient Dave

Power to the Patient!

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Help TEDMED focus on what patients want. Vote.

Correction 4/12: I’m glad to say that there are in fact several patient speakers at TEDMED. There was a massive communication disconnect in the months leading up to this TEDMED, leading to my impression that there were no patient speakers; I hope to find out how it happened. So I’m editing out those points in the post below. The bottom line remains that we should certainly vote to be sure The Role of the Patient is recognized by TEDMED as one of the Great Challenges facing healthcare.

I apologize to anyone misled by what I wrote because of the disconnect.

Please go to the Great Challenges page
and vote for #19, The Role of the Patient.

The top 20 will be selected. At this writing we’re #4 – down from #1 two hours ago.

See other patient-centered suggestions below.
______________________

The event: A number of SPM members are at TEDMED, the big high-profile conference happening this week at the Kennedy Center in Washington. As I’ve discussed with the conference organizers, I have a great concern that the event is conceived from the old-school perspective: it’s about the business of medicine, not about whether patients are getting the care they need.

In the list of 70 speakers, there is not a single patient. We must vote.  

18 months ago TEDMED opened with a spectacular patient story from Charity Tillemann-Dick. This year there are none.We must vote.

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Happy 90th, Dad

Today would have been my dad’s 90th birthday: he was born March 27, 1922. Here’s a picture in his later years.

Dad died in 2005. He lived a full life, for better or worse, from aircraft mechanic in World War II to microfilm salesman to vice president of a division at 3M. He loved his hobbies, puttering in garage or basement – when I was a kid he had classic and antique cars, but dagnabbit he got rid of them before I got my license. (I wonder why?) Then it was boats – he’d learned to sail on Long Island Sound, and taught us on the Chesapeake near Mount Vernon, then on Minnesota lakes, a houseboat on the St. Croix, and then sailing and rowing in Maryland, off the Cheseapeake near Annapolis.

I miss him.

In my college years, and after, I was the ever-rebellious anti-establishment type; he was the ever-positive Dale Carnegie “positive thinking” salesman. Sometimes when I railed against something, he’d ask: “What do you want? What change are you looking for?” (He strongly favored non-noisy / non-polluting forms of boating, but instead of Dad's home made button for his causeattacking, he promoted his positive alternative: the “Société Nauticale de Propulsion Humaine,” with its faux French title and fake Latin motto on the button at left.)

I’d roll my adolescent eyes, but today his words live in the back of my mind, and sometimes come out of my mouth.

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Let Patients Help, Cost-Cutting Edition, Part 3: Shopping for my next CT scan

Since November  I’ve been blogging about what happens when a patient tries to help control costs, in my cost cutting edition posts. Most recently I noted that this stuff takes time, especially since our glorious American healthcare system seems to be set up to block our access to what things actually cost … or at very best, we have no channels and pathways to let us find the information.

Well, ladies and gents, I’m fed up.  I have to get on with life.  I’ve been trying to be a responsible, engaged patient, and if the established channels won’t make it easy for me to find out what I need to protect myself, I will blow the whistle, announce what I’ve found so far, and move on. And we’ll take it from there.

I’m leaving tomorrow for 11 days of work in more sane countries – Switzerland and Holland – so I’m going to report the status here.

A caution and apology at the outset: I expect this will be read by some of the people I’ve spoken to at these companies. A lot of the frustrations I express here are because we couldn’t connect. I am grateful for your effort; you’re just too hard to reach, which is a problem if you’re the only one at your company who can help with this kind of work. I will appreciate your continued effort as we work through this change in American healthcare.:)

Later I’ll blog about the results of my research into my basal cell carcinoma. But for today, let’s just look at the simple (you would think) matter of getting an important CT scan.

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Gimme My DaM Data: The Deloitte health IT guys rock out

Well.

I haz been busy this week, so only tonight did I get around to absorbing this project that my buddy Ross Martin has had in the works for a while.

Remember the “e-Patient Rap” in my “Let Patients Help” talk from TEDx Maastricht? Lyrics by Keith Boone:

"Gimme My Damn Data" coffee mugI wanna be a e-patient
just like Dave
Gimme My Damn Data!
‘Cause it’s MY life to save!

Well, Ross wrote a decidedly non rap riff, set to “Blue Suede Shoes.” He first introduced it (karaoke) at the big HIMSS health IT convention a couple weeks ago, but then he got together in someone’s garage with fellow Deloitters Harry Greenspun and Chris Brancato, with Harry’s son Ben on lead guitar and drums. (Awesome break, Ben!) Dig it:

Better yet, it’s participatory and crowdsourced: they’re collecting clips of you doing a phrase (or more), for the final video! See instructions here.

Lyrics:

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Links for e-Patient Boot Camp #003 (Florida Health Care Coalition)

Here are links to content discussed in the e-Patient Boot Camp Monday, and my keynote and session Tuesday. Thanks to the Florida Health Care Coalition’s board for supporting the boot camp – I look forward to following up with participants!