Time to Leave the Island

This is #NHITweek, that would be National Health Information Technology Week, to the twitter illiterate.  I had the honor and pleasure of painting once again in the great hall of Health and Human Services as some amazing people from ONC, The Office of The National Coordinator for Health Information Technology spoke at a meeting entitled “Consumer Health IT Summit.”

So much has happened and many things have changed in the four years that ONC has worked on Meaningful Use and consumer engagement.  These changes were visually manifest in the fact that half of paintings in the room were worn on the backs of jackets rather than hung on the walls of these hallowed halls. 

Members of the Walking Gallery showed up in large numbers! Keith Boone, Casey Quinlan, Don Fluckinger, Matthew Holt, Donna Cryer, Mary Anne Sterling and Nick van Terheyden were some of those who walked wearing their powerful stories on their backs.  It also made my heart glad to see so many past and present federal employees wearing their jackets at an event at HHS.  Todd Park, Lygeia Ricciardi, Joshua Seidman, Peter L. Levin and Farzad Mostashari all wore their jackets while talking about the future of medicine and technology.

It was a lovely day because I designed the gallery so this kind of visual storytelling could become part and parcel of any health policy dialog. In the past, Individuals have questioned my decision to paint 236 jacket paintings basically for free.  I responded to them saying I designed The Walking Gallery this way so even federal employees could tell their stories.  The gallery accepts all who wish to walk, the gallery jackets have no monetary value and the walker wears them to at least three events of their choice per year.  All of these rules were designed to allow reporters, providers, patients and federal employees to be part of this movement toward truly humane healthcare.

I asked Farzad if he would join us in the gallery several times before he acquiesced last year.  Farzad is an amazing leader in healthcare and would not do anything that would be considered out of bounds in his role as a federal leader.  I assured him that I designed the Gallery so men and women such as him could join.  (I even had an opportunity to talk the ethics lawyers at HHS and they assured me I designed The Gallery in such a way that federal employees could participate.) Last year at a similar consumer meeting Farzad removed the jacket from his back and I painted it on the spot.  

This is Farzad’s jacket: “The Three Stages of Meaningful Use.”

In this painting, Farzad stands wearing his famous bow tie with a smile on his face as three waves shaped like the letter “M” descend upon him.  This represents his life’s work at ONC and his guidance of the implementation of a truly “Meaningful” Use.  In his hands he hold’s a blue button in a pose of reverence.  Last winter Farzad shared with us the story of his Thanksgiving.  After the meal was finished, Farzad asked his parents if they would like to see their blue button data.  As they were on Medicare, Farzad was able to log on and get the download in its raw form.  Then he remembered the presentation by Bettina Experton about I-Blue Button app by Humetrix.  So he called her on Thanksgiving.  She answered his questions and Farzad used i-Blue Button for his family.  The next day his father’s eye hurt.  They could have gone to ER but Farzad knew full well the chance of seeing an on call ophthalmologist in the ER on the day after Thanksgiving was slim to none.  So they used ZocDoc and were able to get an appointment that morning.  When Farzad’s dad saw the doctor he was able to bring up his medical record on his smart phone because of i-Blue Button.

This week at this consumer event Farzad gave us his last words of wisdom as he prepares to leave office.  He told us we were the misfits.  We were the ones who were early adopters or rode our bikes to work in a city of automobiles.  We would have to spread the vision of HIT and consumer empowerment to the wider world.

So I began to paint “Time to Leave the Island.”

In this painting a Blue Button doubles as the Island of Misfit Toys from the classic stop motion animation Rudolph the Red-nosed Reindeer.  The Text “All Misfits Welcome Here” is inscribed upon the button.  Farzad springs “out of the box” and fist bumps with Leon Rodrigeuz (as a polka dot elephant from OCR, Office for Civil Rights).  Leon told the crowd about the support OCR would provide in helping patients access their records and re-affirmed the OCR’s stance that data withholding from patients is just as bad as illegal disclosure. 

To Farzad’s left in the painting is and elf version of e-Patient Dave holding his granddaughter.  Dave treated us to a fast-paced speech that encapsulated all of the strides in the participatory medicine movement these past four years. He ended on that most important note; getting to live, getting to hold this child was why we do what we do.   To Dave’s left a doll version of Lygiea stands with a smile on her face and a Blue Button on her lapel as she helps patients enter the ongoing dialog.

Above the island flies the plane that could not fly, now bedecked with a streamer saying “Checklists Patients Included.” The alludes to both Atul Gawande’s campaign in the wider world of health to embrace the use of checklists and Lucien Engelen’s campaign to improve patient inclusion in medical conferences.

Around the island patients fly or swim propelled speedily along with hashtags on twitter. They are spreading the messages from this day around the world. 

I finished the painting as Farzad closed the day.   I take his advice to heart.  We misfits need to fly into the world of business, research and pop culture.  We need to open minds and hearts.  I know so many of us will miss Farzad heading ONC, but I for one can’t wait to see what he does beyond the island. 

Master of Ceremonies, Backstage at Meaningful Use: Josh Seidman's Jacket

For 12 years I worked at the toy store Barston’s Child’s Play on Connecticut Ave in Washington DC.  Over the years I helped so many local folks.  My customers included many of the great people I work with now, but then I only knew them as really nice customers.  These days, I know them as Eva Powell at the National Partnership for Women and Families, Christine Kraft at Perfect Sense Digital, Claudia Williams with the ONC(Office of The National Coordinator of Health Information Technology) and Susannah Fox with Pew Research.   Another customer was Josh Seidman with the ONC who leads the Meaningful Use Division.

Now, these wonderful people see me dressed in skirts and business jackets speaking on the stage, but once upon a time I helped them wearing old t-shirts, sneakers and jeans with holes in both the knees.  There is a really good reason for the holes.  At Child’s play we kneel to help you.  We kneel constantly to talk with our young customers or to price product and display it upon our shelves.  We even interview potential new-hires seated upon the floor.  So when I see holes at the elbow or the knee, I know I just met someone who works.  Someone who does hard physical labor.

Last week, I had the honor to paint four jackets for The Walking Gallery while attending the 2011 Regional ONC Meeting in Philadelphia.  I started with the one I brought along belonging to David Sides from Cerner.  Then I cornered Anita Samarth from Clinovations, I got one of her jackets.  Then I asked Josh Seidman for his.  During a break he rushed back to his hotel room and brought down his spare jacket.  As I mounted the jacket upon the easel, I could not help but notice Josh works very hard. 

Both elbows had the tell tale holes left behind by long hours at conference tables.  Yes, Josh labors on Meaningful Use often as a servant leader.  He is quiet and thoughtful.  His head is often ducked in thought, and he thinks so carefully before he speaks.   I have presented twice with him on panels and he always has something profound to say.   He maybe the Master of Ceremonies at Meaningful Use, but he is humble and his jacket has holes in the elbows and that means so much to me.

But his story means even more, because Josh is a Father and Josh is a Son.  And Josh knows in a very real way the power of patient and caregiver access to the Electronic Medical Record.  This is Josh Seidman’s jacket:  Master of Ceremonies, Backstage at Meaningful Use and I painted this as Josh spoke on stage before the assembled crowd.

Last fall, Josh wrote a personal blog: Meaningful Use Expert’s “Virtual Bedside” EHR review

 about his long distance experience with his Father’s hospitalization.  Josh’s father was admitted to the ICU 500 miles away in Boston.  With consent, Josh was able to log into the hospital patient portal.  He was able to view lab data, active/inactive medications, x-rays, cardiology reports, ECG’s and blood cultures.  After discharge, Josh was able to view the discharge summary as well.

The portal was not perfect, it could have been more user-friendlier, but it was access.  And as I Josh can tell you, family members and patients suffer great emotional anguish if they have no access to timely communication during a hospitalization.

Also, there were important pieces of information left out of the portal.   There were no progress notes nor CT scan results nor any way to provide secure messaging to the care team.  But the access that was available was better than being alone in the dark worrying.

So in this painting, Josh is backstage and the curtain is drawn.  He sits upon a circus stool.  He is wearing the Ring Master’s uniform.  He has a slight smile with tired eyes.  He is working on a Laptop trying to access needed information.  Beside him stands his father.  Writ large upon his Fathers chest are the elements of his clinical record.

To the far left stands a circus elephant stoically, patiently supporting the laptop computer with his trunk.  Here is the elephant in the room.  This is the emotional elephant that is such a large part of information access.  But it is also the patient/consumer/caregiver as the elephant. 

A major aspect of this meeting was the continual mention of engaging the consumer.  And like a good advocate friend of mine said recently, “I don’t want to be engaged, that is after the fact, I want to be on board from the beginning.”

You see, I could have written any clinical fact on this laptop screen, but I didn’t.  Because the most important part of timely access to the EMR was summed up in four words, “I love you Dad.”   And that day Josh wasn’t the Master of Ceremonies of Meaningful Use, he was just backstage, part of the cast and crew sitting in darkness and praying for a little light.

I saw Josh heading home on the slow train to DC.  He was wearing his jacket.  He was leading with his patient story.  This is the true vision of patient participation.  Thanks Josh for all you do.  You help all of us who are wearing thin within our advocacy, by all you do and say to support the mission of the Patient Voice in Meaningful Use.