Monday, June 4, 2012

Crashing a Party

June 5th Update: Click the link for a summary of what happened at this Not so Secret White House Meeting with e-Patients.

Today I get to do something really cool with my eldest daughter Abigail.  She's been learning from me how to be a patient for some time now.  Today, she's sitting in a room in the White House Conference Center with Dave DeBronkart, Regina Holliday, Hugo Campos, Farzad Mostashari, Todd Park, Peter Levin, Lygeia Ricciardi and quite a few other notables.  Literally a who's who in the zoo of patient engagement at the international and national level.  How she and I got to be here is an interesting story.

It starts with a reunion of The Walking Gallery that is happening this evening.  When I found out when it was, and checked calendars, I realized that this was the opportunity I had been waiting for.  So I reserved two places, and got my daughter and I airline tickets to go.

Abby had started following Regina on twitter the day she saw my jacket.  She's been wanting to be part of the movement ever since she heard Regina's story. The story behind 73 cents is that powerful.  My family and I made a point to stop by the mural the last time we were in DC together.

When I told Abigail she was going, she was thrilled.  She began designing her jacket a couple of months ago.  And now she's showing off her latest piece of fashion at the moment, which is hot off the racks from the most fashionable patient designer in Washington DC, to some of the biggest names in the movement in the US.

We had a minor edit to the design last week though.  A few days ago, an e-mail about one of her parting comments gained quite a bit of attention over at  So much so that Abigail and Regina decided that it needed to be added to her jacket design for Epic Win! which you see to the left here.

Abby tells us a bit about her jacket:  "There is this imposing figure, saying "I'm going to fight for this.  It's important."  The Eagle represents America, we fight for what is right.  The owl is about wisdom and understanding.  He's got a box of medical records next to him that he's getting ready to read.  The swirls just keep going.  This is not a battle that is going to end.  We're not going to give up until we've got it right, until we've got what we want.

Check the box was just something I said at the time without thinking about it.  I didn't really know what it could mean.  But it was a really cool idea.  What if you really could do this, to say "I want to be engaged, help me do this!"  Check the box is about patients wanting to help, to take care of themselves.  Choosing to be engaged."

Abigail is here to learn.  She spent an hour on the phone yesterday with Dave and I talking about Patient Engagement, and Healthcare Standards.  We brought Dave's world and my world together on the speakerphone, while my daughter listened on, fascinated and confused.

But how did we get here?

A few weeks ago I got an e-mail that started off something like this...

On behalf of the White House, the Office of the National Coordinator for Health IT within the Department of Health and Human Services, and the Department of Veterans Affairs, I invite you to participate in an expert roundtable that will propel patient access to health data forward by identifying and prioritizing areas where technical standards and best practices are needed. ...

It was signed by Todd Park and Farzad Mostashari.

I was thrilled... then disappointed when I recalled that I had no travel budget for this trip, and it was probably too late to get an exception.  But then I realized that I would already be in DC that day with my daughter.  I explained the situation to Farzad via a Twitter DM, and asked if she could come to.  She was offered a seat as an observer, which I'm been given to understand are very hard to come by.  So Abby is "crashing the party".

How did I get here?  I'm not exactly sure, but it might have something to do with a discussion I had with Lygeia at HIMSS on educating children, or it might have been some work on Query Health, or it might have been ... who knows?

It's nice for me to not have to crash the party.  But just in case, I think I'll print out a copy of my invitation...


P.S.  Do you want to hear something really funny?  Abby knows what the National Coordinator does, but when I had to explain "Chief Technology Officer", she didn't quite get it.  But when I told her who his boss was, she thought that was pretty cool.


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