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Wednesday, September 18, 2013

Finals



Surely, you remember those days.  The sleepless nights filled with cramming knowledge into tired minds preceded days of testing.  We walked around in a caffeine-fueled daze; our pencils sharp prepared to fill little bubbles with darkness or scrawl endless essays.

And so it went, through junior high and high school.  The finals would come, time and time again. We would be tested.  We would pass or fail.  And if we passed, there would be more tests.  College finals were a little different; we would download the content of our minds in essay fashion into a little blue book.

I hated to write in a blue book, as my handwriting is abysmal.  But beautiful or not, everything I knew was laid bare for my professor to see.  I would pass or fail based on what I had managed to impart between these blue pages.

Do you know Peter L. Levin?  If you follow health policy matters, you might know he led health record innovations at the VA.  His official title was Senior Advisor to the Secretary of Veterans Affairs.   He was the executive sponsor of the Blue Button personal health record.  He worked with White House on technology initiatives under both presidents George H.W. Bush and Bill Clinton.  He co-founded a semi-conductor design firm.  He is the co-author on 50-plus articles on wide ranging topics from GPS to engineering to cyber security.

But most all, Peter is a professor. 

He joined The Walking Gallery in his favorite tweed jacket.  He usually wears this jacket once a week and has for the past ten years.  This is Peter as himself.  All titles and accomplishments aside, Peter is a teacher and he cherishes those around him.

This is Peter’s jacket: “Finals.”

"Finals" a jacket for Peter Levin

In this painting, Peter stands beside a rolling lecturer’s chalkboard.  He is telling the class about the wonders of the Blue Button.  In front of him and sitting on a desk is a member of his team: Jim Speros, Special Assistant to the Chief Technology Officer in the Office of the Secretary of Veterans Affairs.   

What is the Blue Button?     

A few years ago, there was a meeting convened by the Markle Foundation.  In that meeting attendees were talking about how important it was for patients to able to easily access their medical record.  Someone said, “Why can’t there just be a blue button you push and you get your data?” 

Blue Button was born.  The U.S. Department of Veteran Affairs adopted it first.  It is a clickable icon that allows a patient to download their personal health records in a digital form from a secure website.  The VA, Medicare and Tricare offer this service to thousands of clients. In June of 2012, a White House meeting convened proposing an expansion of Blue Button to other agencies, venders and insurers.  Many organizations pledged to adopt this needed innovation. 

The Blue Button does have its detractors.  This button allows for a data dump in a pdf or ASCII file.  The data is not organized in a way that is easy for a layman to understand but is human readable. 

The data down load reminds me a great deal of my old blue books.  It isn’t pretty, but it is the information needed to pass the test.  And when we talk of patient data access this test is about life and death.

Peter stands at the chalkboard lecturing to the class.  He smiles as looks around the room.  But he stands at a rolling chalkboard and everything can change in an instant.  Have you ever lectured using one of these boards?  They are double-sided.  They are designed to easily flip over, allowing the instructor to write on the either side.  Such boards will surprise you.  I have found myself writing furiously on such a board only to watch it spin and turn.  My writing will be replaced by another lesson.  And so we go from Blue Button to blue alone.

Blue is such an important color.  For much of history, the color was synonymous with darkness.  (Only recently, and only in America, do we sometimes associate it with healthcare.)  Every new artist learns the lesson of blue when mixing color.  To have the blackest black, the deepest shadow you must add blue.  So we have sorrowful music and call it the Blues.  When people fall into depression, we call it the Blues as well.

In this picture Peter holds the hand of his uncle Ronny.  They grew up together as though brothers, with Ronny only ten years his senior.  Peter loved his uncle Ronny and watched him battle with depression and mental illness through adolescence.  Then Ronny died from cancer in his 20’s. 

Peter and Rony

To the far left of the painting a young girl stands. That is Amanda Andrews on her first day of second grade.  She seems so happy here.  She seems so happy in so many pictures over the years.  But in the summer in her 16th year of beauty and youth, Amanda killed herself.  Her mother Kristen Andrews, is a friend of mine on twitter and works for Kaiser Permanente.  She was at work at the time.  She was in a meeting about health as her daughter died.

Jim Speros and Amanda

In the foreground on the far right is Misha Head.  I had the honor of being Misha’s supervisor at the toy store Barstons Child’s Play for a number of years.  Misha had the best laugh.  It would fill a room with joy.  Often that laugh would hide a deep well of sorrow.  Misha moved away from DC and decided to go back to school.  She wanted to dive back into the world of blue books and chalkboards.   But one day the well of darkness within her grew greater than her laughter.  She killed her herself 2011.

Misha

Finally we have Jim.  Such a nice man, so kind to all of us in every meeting I have attended in on health policy. He sits upon the desk prepared to speak to us, prepared to move boulders out of the way of progress.  Jim had such a nice smile upon his face to hide his sorrow.  Peter was his friend and Peter was his supervisor.   Jim killed himself last fall.  Peter never saw it coming.  Just as Kristen could not imagine she would lose her daughter during summer vacation.  Just as I cannot believe I will never hear Misha’s laugh again.

Blue Button

We sorrow, and then wonder why they did not share their deep despair with us.  Why do we live in a culture where we can talk of Blue Buttons but not blue feelings?

8 comments:

  1. Using protocol or other barriers to avoid people who ask for help may give us momentary relief from the challenges and costs of caring for others but ultimately it places our culture where we are now: millions of human beings whose health is not valued and supported. This is our shared chronic illness.

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    1. The problem is an even deeper one. How do you know someone needs help when they do not tell you?

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  2. We fear disclosing the depth of our sorrow to our friends lest we end up being "button-holed" mentally ill

    We hide our the loss of our ex-boyfriends to "death by suicide" within a dark blue blanket of loneliness so that we don't suffocate anyone else..

    We try to reach out to therapists who tell us they don't take "Blue Cross for Govt employees" as it pays them less than Medicare.

    We drown silently in the blue ocean of despair watching how profits and power drive healthcare unable to raise our hands above our heads to signal for help.

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  3. When the dam of our silence breaks, it will do so with tears.

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  4. Regina,
    Once again you weave the threads of patient engagement and healing with a national health crisis. Your ability to synthesize issues never ceases to amaze me. We've talked about this before.. the dam should break, the tears should flow and only after can we start to rebuild health in all its myriad of meaning. I believe in the historical metaphor of floods washing clean.
    Anonymous.. if you are anywhere near PA I don't do insurance :) and I see your hand.

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  5. Thank you Amy. We must do what we can to bridge that silence.

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  6. Such a sad,complicated story. My brother suffered from severe depression most of his early life into fatherhood. After an almost fatal, botched suicide attempt, he finally recieved the help he needed. He too was silent. He shared with me years later, he was ashamed of his illness,hopeless that he couldn't help himself out of it, and tortured by a pain so deep that he just wanted it to end. We were fortunate that he was eventually able to find the right fit of doctors,therapists and hospital that were able to help him find his way back. Today he is healthy,vibrant, joyful Father and husband. Until we as a society, remove the stigma and judgement that is associated with this illness-no amount of healthcare will dry our tears....

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    1. Thank you for sharing a deep personal story of your own on this topic. We need other folks to do this too so we can defeat stigma.

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