Power Suit

The other night at dinner my youngest son Isaac said from the depths of his seven year old wisdom, “A human is the only animal that wears clothes.”  He then went back to chewing his food as I nodded in agreement.  Clothes and the adornments we place upon them say so much about the person.  They can place a person on an economic scale and give a sense of belonging.  Clothes can mark us as different and rebellious.  If an outfit is strong and becoming it may be called a “Power Suit,” as though the clothes can make the man.

I think its works the other way within The Walking Gallery.  Recently I painted a jacket story for Ian Eslick.  Ian plans to wear that jacket for his dissertation defense at MIT.  Ian is really smart, as in getting a doctorate from MIT smart; but Ian does not flaunt his mental abilities.  He speaks from a patient view as he talks of data aggregation and the possibilities if we harness the power in patient reporting within scientific research.

The painting for Ian is entitled: “The Highest Double.”

In this painting, I placed Ian, his mother-in-law and his two twin daughters.  They are playing a game of Mexican Train.  Have you played Mexican Train?  I love it.  I love it because it looks so hard at first but it is so easy.  Someone had the brilliant idea to color code the dominoes.  Each color is also a number, so seniors, children and parents can all play.  I learned to play this game with my in-laws.  I told my boss at the toy store we should carry it.  He brought it in reluctantly.  He said it wasn’t a very hard game, why would anyone want to play it?  I told my boss it had some good addition drill and it was fun, but most important of all anyone could play.  So if you look closely at these dominoes you will see they begin to morph from regular dominoes into patient reported diagrams.  How can a chronic condition be affected if we remove one agent of causation and compare outcomes?  What if we start comparing patient populations and look for doubles?  Look for patterns? Think of that train of knowledge. 

You see Ian is looking for that highest double.  He is looking at entire patient populations just as you or I would look upon a pile of dominoes.  He is looking for the match, the pattern, the train.

You might notice coins are laid upon this table (you also might notice they equal 73 cents).  My family uses coins as markers when we play Mexican Train.  If a coin is placed upon my domino track, I am unable to play on it and it becomes a train held in common.  Anyone can play on it.  In the game upon this table all trains are private.  Ian has a train and his two daughters have trains.  That final train with its foreshortened perspective facing the viewer; whose train is that?  It is yours.  It belongs to all of you who look upon Ian’s jacket.  You are welcome to join this game of data. 

Ian wants you to play.  

Data Mote: A jacket for Susannah Fox

I knew Susannah Fox in my life before.  I knew Susannah as a really nice Mom who would shop for her children’s toys without an edge of hurry or impatience.  I knew her as a woman long of limb and filled with sunshine. I would see her walk within my store with a sun hat on her head and a smile upon her face.  I would sell her toys, and she would buy them with gracious kindness and then depart. 

That was my idea of Susannah Fox.  I did not know her name.  I did not know her job.  I only knew that she was kind and was a good mother.

On May 27^th 2009, I would meet Susannah again.  I would meet her in a small health 2.0-group meeting that was my diving board into the world of patient advocacy.  She would talk of pie charts and graphs.  She would list statistic after statistic based upon her research at Pew as it applied to patient populations.  She would take all those individual stories and combine them and compress them into the statistics or “hard” data.  

As the months past, I grew to know more about this new Susannah.  I would watch her choose her words carefully.  I would watch a woman who said important things always supported by the facts.  I would see a powerful woman who would often step back into the shadows, like a fair witness or an impartial observer.  She did not advocate, she only told the truth.

This is Susannah’s Jacket: Data Mote.  It is as serene and concise as the data she presents.  There is no mess or unnecessary details in this picture.  It is all angles and planes.  It is all shadow and light. 

In this painting we can see the silhouette of Susannah behind a Japanese Screen.  She is presenting a speech.  She is telling the world the results of the newest Pew research as it applies to health.  She is doing it in shadow.  The data itself gets the spot light.  Susannah is just the vessel from whence the data pours. 

On the right side of the painting a human figure stands.  This is the data mote.  This is the faceless patient.  All unique identifiers have been removed.  She/he/it has been scrubbed.  This is clean data.  But this creature seems rather sad as it holds onto the screen that shields Susannah from view.   I do not think it shall peek though, as its head is lowered in submission.

Behind this figure is a window.  In that window, shines beams of sunlight through a cloud.  This is cloud technology and social media and it is changing things.  This cloud with its bright shinning sun is changing the data space.  Our data mote now has a long shadow.  Perhaps that shadow will tell us more about this creature than we would ever have known before.

I love to think of data.  I love to paint what data means.  But sometimes the way we collect it and scrub it makes me sad. 

When I painted Apples to Apples last year, I looked at quite a few data sets.  I was saddened to see areas where data could not be reported because the population that had the disease or injury was so small as to be identifiable by a hospital data set.  This applies especially to rare disease.  And I thought of Fred.  Kidney cancer is considered a rare type of cancer.  Was Fred’s clinical outcome scrubbed, because to use it would have identified him?  And then I wondered had anyone thought to ask him his wishes?  Did he want to be included regardless of possible identification, if it would save lives?

I went to a Health 2.0 Meet Up in Bethesda not long ago where I asked about data donation.  Can you imagine going to the DMV to renew your ID or your Drivers license and the staff would ask you two questions?  Of course the standard, “Would you like to be an organ donor in the event of your death?”  But what if that was followed by, “Would you like to release the content of your EMR/PHR for the purpose scientific study?”

Can you imagine a world where HIPPA was used in a different way?  I sign a HIPPA release.  I give permission to share my information.  Some folks phrase this as “waiving my rights.”  I disagree.  I am using my right to share data.

I wonder how much our appreciation for data would change, if weren’t quite so clean?  Humans are messy.  Our lives and loves are messy.  Not everything is black and white within medicine.  To make a place for the patient story in the world of HIT, sometimes we have to use names.  Sometimes we have to make personal. 

I think Susannah does her best to make data sets personal, given the limitations within the current form.  I am glad I got to paint this jacket for her and to sign it as an “Adult between the ages of 18-49.”