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Saturday, May 4, 2013


Recently, I delivered one of my favorite types of speeches: a speech with Dr. Ted Eytan!  On April 26th, 2013 I delivered a Patient Engagement Panel Speech at The Mid-Atlantic Healthcare Informatics Symposium presented by The Children’s Hospital of Philadelphia or CHOP, as it is known and the Center for Biomedical Informatics, CBMi.  We were invited to present by Anthony Luberti, MD, Medical Director, Biomedical Informatics Education at CHOP and CBMi and Mark A. Diltz, ED. D., Manager, Biomedical Informatics at CHOP and CBMi. 

Did you know I gave my first speech in the world of health on a panel with Ted?  It was “Beyond the PHR: Promoting participation at all levels at all levels: internal and external: patient, family, community.”  5th World Healthcare Innovation and Technology Congress, Washington, DC November 2009. The years would pass and we would present together informally at many roundtables and formally on many stages. We would always be so much the better for our collaboration.  And just like several speeches in our past Ted came to my rescue at this CHOP event uploading my power point deck through slideshare onto his laptop seconds before I would speak.  Just as hours before, I would paint the water ripples back onto his Walking Gallery jacket that the two years of constant use had made faint.

Philadelphia and Mid-Atlantic Bio Informatics 23089

You see, Ted and I, we help each other.   We are doctor and patient/friends and collaborators.   When I speak on the stage with Ted, I feel that optimism of the child within.  Work becomes play and hope springs eternal.   So I shared my speech on toys, data, childhood and abuse entitled “Thinking Outside the Toy Box.” 

Ted spoke of patient engagement and environmental stewardship.

Our Moderator was Alex Fiks, MD from CHOP with a background in urban pediatric care with a focus on HIT (Health Information Technology) integration.  He did a great job of explaining the current HIT landscape.  Also on our panel was Daniel Masys, MD.  His focus was genomics and he redesigned his power point after seeing mine prior to the event. (That was super cool as I have a high school degree from Sapulpa High School and did a speech that compared toys to data and Daniel is an honor graduate from Princeton with 30+ years in biomedical informatics)   His presentation focused on the true ramifications of embracing a learning health system and tracking serendipitous drug response. 

Can you tell how much I loved this panel?  It was a great moment for us and for the hundreds that attended.  After we spoke there was a robust Q&A and I was able to share several important points with the crowd. One is that I have signed a Kaiser Permanente HIPAA waiver so Ted is free to talk about me at whatever venue he chooses. I love to remind folks the default in privacy and security is not lack of access, it is asking the patient what they want.  Some of us want to share!  Secondly, I was able to share the knowledge with audience about Leon Rodriguez and his work in The Office for Civil Rights.  The OCR is helping patients who aredenied lawful access to information and ensuring their rights.

So that was my speaking, but it has been a few years since I have limited myself to only speaking at an event.  I painted as well.  The first painting was entitled “The Story Within.”

The Story Within at CHOP

This painting was based on the morning presentations and in large part was inspired by the keynote of Daniel R. Masys, MD.  In professorial tone, (I am not talking about a stuffy, somewhat patronizing lecture, but instead that endearing combination hesitancy and passion that an instructor will engage in when he truly loves his topic.) Daniel explained the beauty of genomics and compared it to an encrypted code within technology.  So within my painting swirling curvaceous double helixes arise from within the book of our internal code and small children climb the ladder of time. 


The lower half of this painting focused on concerns raised in the presentation “Provider Perception of the effectiveness of Early Warning System for Sepsis in and Academic Medical Center.”  Here the gold tone background has a lovely etching of black brushwork that one slowly realizes is the word sepsis in constant repetition.  A child lies upon this field and what was once a red bookmark in our book of self has become a thermometer reading a fever spike.  A mother cradles the child’s head, as she worries. Is this only the flu or something far worse?  In the Q&A after the presentation I was able to share information about an EMT pilot in rural Maine that will allow EMT’s to do home visits to complete remote testing.  Happily the ambulances there have the ability to test for sepsis via lactate testing.  

MovingThe afternoon painting is entitled “Moving.”  It was largely inspired by a hallway conversation I had with Judy Murphy, RN Deputy National Coordinator for Programs and Policy, Office of the National Coordinator HIT.  She would be our afternoon keynote.  She was telling me about the trials and travails of moving cross-country for her job.  She explained the stress of leaving her husband behind in Wisconsin while she worked inside the beltway.  We commiserated about the challenges of maintaining care coverage as well as data access during a physical move.  As I am moving myself into rural Maryland, I felt her pain acutely. We talked about the need to pack everything and sort later what should be kept and what should go.  That is a very strong metaphor for complete patient access to the Electronic Health Record.  Let me have my data, let me unpack it and let me decide what can be kept and what should be passed on.

So as Judy Spoke of HIE completion and Blue Button capability, I painted a green landscape with small white houses, a large hospital and the roadway spells “HL7.”  Upon the roadways a large moving van has written upon it “HIE moving.”  These are the movers you hire; they handle all the details and get your stuff or your data where it needs to go.  Flying into “the cloud” is another moving truck.  It is an U-Haul with the Blue Button symbol upon it.  See some of us want to carry the load ourselves, our reasons may be varied: be they economic or a desire for control, we still want to download and transmit our data or ourselves.


Finally to the far left a patient on a motorcycle speeds by.  I was live tweeting this event and my friend Keith Boone, or @motorcycle_guy on twitter asked, “Where is the motorcycle?”

Motor Cycle Guy
So we end a day that started by uncoiling the innermost code of the human cell to focusing on the beginning of a girl like me.  I exist because of a motorcycle and a hospital.  My father was in a horrible motorcycle accident in the 1960’s.  In the hospital he met my mother.  They married had three wonderful children.   My father was a hard man who often beat us and taught me by force that we must stand up to injustice.  So I paint, I speak and share the truth that opens eyes and allows tears to flow. 

I loved this day and each person I met.  The greatest compliment I could ever receive came from many of the attendees as they told me my words were moving.

Moving, that is what we must do.  Do not stop; do not give up until we get change in this nation. Data must move and we must be able to unpack it.

the team at CHOP

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