Non-compliant

The woman looked at me and partially asked in jest, “What exactly does Ted do?” 

I am familiar with this question as I am a friend of Ted Eytan and he is not easy to quantify.  Shall I answer in the traditional way?  He is a doctor.  He works as a Director of the Permanente Federation with a focus on emerging technologies, utilization of social media channels and health information technology that supports patients and their family members in achieving an active role in their health journey.  But grasping the true concept of Ted is sort of like holding liquid mercury between one’s fingertips; for like mercury, Ted is fast and reflective.

In May of 2009, I attended a small Health 2.0 meeting in Washington, DC.  My husband was in inpatient hospice and gave me leave to spend a few hours with some amazing people who were trying to change the world of healthcare.  That day I would meet with Christine Kraft, Susannah Fox, Cindy Throop, Claudio Luis Vera, Nancy Shute, Dave deBronkart (via speaker-phone) and I would meet Ted.  Ted seemed so serene within the group. This was my first health meeting and I brought my husband’s dell laptop computer so I would seem professional.  Then I listened to presentations on ehealth.  At 3:15 I spoke and the room went silent as I recounted the horror my husband and I had faced these many weeks. Ted did what Ted does best, he listened to all I had to say then he asked a question: “What was the worst thing that happened?”

I answered, “Lack of access to my husband’s data was the worst thing.” The group then told me to focus on that.  For the past three years I have and I often have fought for patient data access with Ted at my side.  Recently I had the honor of painting Ted’s second jacket in The Walking Gallery.  This jacket would tell his story and it is entitled “Non-Compliant.”

Ted has been a member of The Walking Gallery for the past year. He has walked all over the US wearing Surgeon General Regina Benjamin’s story on his first jacket. He did an amazing job. So many people know more about our Surgeon General because this man was willing to wear the trials of another on his back.

But this jacket is Ted’s story.  Ted is one of those amazing people who question everything: the status quo, the old model and new trends. Through these questions he purifies thought and distills a million pleas for help into a coherent strategy.

Ted looks to the left when others look to the right. This skill is not without price, and Ted has paid again and again. You want know how you learn to see a problem from the outside?  You learn by being the outsider. You learn by years of darkness. You learn bravery while hiding in closets avoiding fists or taunts. You spend years standing out within a crowd, not fitting in. You learn in the lonely time of introspection that these other children see a different world.

Their faces are not finished yet.

When I was young, I loved to paint and draw old men. My friends wondered at my fascination. I said “I love to draw their beautiful pain.”  Ted has one of the most beautiful faces I have ever seen, and he had it as a child. In this painting, I stand behind Ted. My hand rests upon his shoulder. I too look to the side with a worried glance and question what is coming.  I know how it feels to see a problem from the outside.  I know the darkness that Ted has seen.  Yet we smile. Ted firmly replies to any set back, “Love always wins.”  The child in me holds the child in him. Together we are more powerful than we were alone.

We are the non-compliant ones. Do you know what compliant means? It means docile, willing, obedient, manageable and submissive to an excessive degree. Ted may be a doctor. I may be a patient. In this we are one, out and proud.  We are non-compliant. We question authority.  We question folks who say “That is just the way it is.”  We will not stop asking questions.

In April of 2011, I told Ted we should have a gallery show in the Kaiser Permanente Center for Total Health.  He responded with a twinkle in his eye that they would never let us pound a nail in these new walls.  I responded with a glimmer in my eye, “We won’t need nails we will wear the art upon our backs.”

Now 164 jackets later, I can firmly say a patient art advocacy movement was born out of a moment of shared non-compliance.

Love always wins.     

The Forrest for the Trees: A jacket for Danielle Cass

There are two tiny jackets in The Walking Gallery.  One belongs to my son Isaac, he wears a boy’s size six.  The other jacket belongs to the energetic Danielle Cass.  Danielle works at Kaiser Permanente and she is a manager for the national public relations, media outreach and communications for KP.  Her jacket is tiny, a women’s size small with baby doll sleeves.  It almost looks like a jacket for a little girl.  I understand exactly why Danielle chose this jacket for this painting.  You see inside, Danielle is still a little girl with two wonderful parents.  And those wonderful parents have both been diagnosed with cancer.

Danielle’s parents are retired physicians who dedicated their careers to practicing in public hospitals, conducting health research, focusing on health education to the public and teaching residency programs.

In this picture Danielle’s parents hold her newborn son in the year 2000, before they were diagnosed with cancer.

Her dad is a urologist and introduced mobile lithotripsy to the Midwest.  He was diagnosed with bladder cancer in 2002.  He has endured many surgeries, but still his cancer spreads and his treatment continues, with one complication after another.

Her mother, a family practitioner, opened the first health center for women in the United States in the mid-1980’s.  She also lectured widely about women's health.  Four years ago Danielle’s mother was diagnosed with melanoma skin cancer and advanced lymphoma.  These are two separate non-related cancers, yet she must be treated for both.  Danielle’ mother went through intense chemo, lost her hair, and the lymphoma went into remission. She continues on chemo every two months, and each month has more of her skin removed because of the cancerous lesions.

Danielle’s parents are on a path.  They are on a journey in the deepest forest of cancer care.  All of their years as providers can only help so much for now they are the patients.  Now they are stuck in a non-EMR supported non-integrated health care system.  They are scared and lost deep in the health care forest.  They are bewildered because the multiple providers who engage with them during their journey can’t seem to see the forest for the trees.

In this painting, Danielle’s parents stare into each other’s eyes.  Their gaze encompasses their deep love that spans decades.   But within this love there is also worry and confusion.  It feels as if within a moment they will walk arm in arm, supporting each other on that darkened path with its confusing signs and poorly lit corridors.  Unless you are a patient or have intimately cared for one, it is hard to understand how very scary and disempowering the patient’s journey can really be.

Before them is the forest and each tree is festooned with signs that tell them where to go next.  But often the instructions are contradictory and confusing.  Danielle’s parents find themselves going one way then another without any kind of healthcare GPS to lead the way.

Yes, I understand why Danielle picked this jacket.  She would like to remember a time when her parents were giants, and she was so small.  But that time has passed and the road is long.  It is Danielle’s time to listen to her parents distress and help them in anyway she can.  And she will do it and she will remember.  That experience will inform her life and her job, and help Kaiser Permanente and other health care systems see the forest and the trees.

A Post Script: Six Months Later

This is Danielle with her parents.  She had a chance to show them the jacket in person for the first time.  They were very moved especially when Danielle told them she had worn it on stage.



She wore her jacket at the Social Media Conference at the Mayo Clinic.  She stood out among a the crowd, but there were other walkers there to support.  Both Dave DeBronkart and David Harlow were walking as well.

She wore it again at HealthCamp LA, where she and Mark Scrimshire  led a group through their first unconference.  As they amazed the crowd with the wonderful immersion of open communication that the unconference model affords, they never turned their back on those assembled.  When you where a Walking Gallery jacket you are always face to face, whether it is with Danielle or with her parents.

The Walking Gallery

We are the Gallery that walks.  We are the Patients that wear our stories on our backs.  Soon we we shall to come to a city near you and and create gallery space in moments.  We won’t pound a single nail into the walls to hold the art.  Dozens of people will walk into a space wearing business jackets or doctor’s lab coats.  That alone is not unusual.  But these jackets will be works of art.  Each one shall be painted with the story of a patient or an element of medical advocacy by me or another artist.  These masterpieces will be worn on the backs of government employees, technology gurus, medical professionals, social media activists, CEO’s of companies and artists.  It shall be a great meeting of the minds.

The Walking Gallery exists because Jen McCabe followed me on Twitter on May 30^th 2009.    That was the day before I placed the Medical Facts Mural in Pumpernickels Deli on Connecticut Ave.  That was a day when my Fred was still alive and could speak and eat again because of the wonderful care he was receiving in Washington Home Hospice.  Jen was one of my first followers on Twitter and is such a glorious spark of life.  

On August 20^th she emailed me after I had posted a comment on her blog and asked me if I would paint a series of paintings on the back of her blazers to wear to upcoming health meetings.  I told her I would be honored to paint jackets for her.  Jen responded, “Symbols and talismans mean quite a bit to me, and having things constructed by friends is one way to remind myself why I do the work I do and forego so many of the other things I enjoy.  I'm so happy to have a wearable badge of courage - just wrote an index card for myself to remind me of the importance of patient advocacy by "any means necessary."  Art is another one of those means.”

I finished the second mural “73 Cents” on September 30^th 2009.  It was my feverish obsession in the weeks after Fred’s death.  “73 Cents” was a thing that I had to do.  It soothed my soul; it spoke to me and calmed my aching heart.  It gave me a reason to leave the solitary confines of my mind and my widowhood.  It gave me permission to stand on the street and talk with complete strangers about the grief roaring within me.  I often go to social justice events and hear about the chronically homeless on the street.  I hear workers complain that they find small single apartments for these folks to live in, but instead many return to the street. 

I think I know the reason why. 

It is hard to be alone when sadness is engulfing the mind.  The street is alive, and there the broken congregate and help each other.  Each day I painted I made many new friends, but those who came back and spoke to eye to eye were often the most dispossessed and the homeless. 

Without Jen’s suggestion that I paint jackets, I would have gone home, my Magnum Opus done, to loneliness and grief.  Yes, I was still blogging, but that was not enough.  I had to paint.  I had to spread the word through art.  Jen had provided a new “wall,” and that wall could walk into the Mayo clinic or the National Board of Medical Examiners and remind everyone of those patients who suffer in a system without real time data access.

I would paint and post images of three jackets for Jen:  ”Data Prison” on October 5^th 2009,

“Titanic” on December 14^th 2009

“First Responder” on January 12th 2010.

As Jen and I began to tweet about the jackets, Elizabeth Cohen from Empowered Patient on CNN would see our twitter stream.  She said she would write a piece about the jackets on CNN health as they captured the zeitgeist of the patient data access movement that @ePatientDave had so apply entitled: “Give Us Our Damned Data.” 

Due to Jen’s very public appearances wearing patient advocacy jackets, two other thought leaders would contact me to obtain images they too could wear.  Chiara Bell from Enurgi, later to become part of Univita Health, would ask to have a jacket of her own.  She wanted to show the importance of the caregiver in patient care.  I made for her the “Caregiver’s Clock” a painting that depicts both the family member as caregiver and the professional caregiver caring soothing the terminal patient.

Finally, Roni  Zeiger from Google Health would contact me.  He wanted a jacket that depicted the passionate need for data access felt by the patient/caregiver.  I painted for him “Data Cloud” that recreated my desperate feelings to find out the truth via the Internet.  Roni Zeiger then wore that jacket at the Community Health Data Initiative event on June 3^rd 2010 before a crowd of hundreds including Secretary of HHS Kathleen Sebelius.  Roni would finish his presentation about the Combining of HHS Hospital Compare with Google’s Fusion Tables Cloud Database App, by turning his back on the audience and saying, “The last thing I would like to mention is that, let’s not forget all of these data points tie back to individual people and their stories.  And many of you probably know of the work of Regina Holliday.  She is an incredible woman I met recently.  An artist. She made- I am not a fashion guy, but she made this jacket for me.  Feel free to come up after to get a closer look.  We made a deal.  She would make this jacket for me, if I would wear it at important conferences.   This is the first time I am wearing it.   And it is about the importance of data and the importance of talking about data and the importance of technology in the future if health care.”

So, that is the story of five jackets that I painted to spread awareness.  Five jackets. They bring the “patient” into the room and onto the panel, when no patient was invited to attend.  They remind me of the encaustic mummy paintings from 1^st century CE found in Egypt.  These amazingly real and poignant faces stare out above dried sinew, wrappings and bone.  Their eyes sear our souls and remind us, I was once one of you who lived and played, who laughed and loved before I met this fate.   They transcend the dust and the darkness of the ages, and make the lives lost long ago so very real.  The jackets worn by these brave few do the same for data, and pie charts and graphs. 

When you sit in an audience listening to a power point presentation, and the faces on these jackets stare back at you; it changes things.  It adds an edgy sense reality to dry recitation of data.  It wakes you up.

Perhaps you will have the honor to wear one of these creations.  It can be quite unsettling.  People will stop and stare.  You can now enter a conference and feel like an outsider.  Ostracized.  You can be given the gift of experiencing the disconnected feelings of the ignored patient in the room.   People will point and talk about your back like you are not even there.  You are a “case,” an object, you exist to be described and critiqued.   And after being at a conference all day, you can take that jacket off, and be normal again.  Or not.  You can “come out.”  You can let go of that other title, be it, Techie, Doctor, CEO or founder of a non-profit.  You can cease to be defined as the cog you appear to be in the machine called medicine.   You can be simply patient.  You can tell your personal story and reach your inner center as a patient.

Perhaps my painting will help you.  Perhaps it will be the icebreaker you need to let go of the ubiquitous black suit that blends in at a medical conference.  Perhaps it will be way to open up about why we are doing all of this important work.  We are doing this to help patients heal.  We are doing this so we can all live happier lives.

So… CALLING ALL JACKETS!  CALLING All ARTISTS! I need your jackets, I need your stories.  I need other artists who would like to join a movement.  Never let anyone tell you, that you do not have a voice.  Step up and Speak out.  We get great change by doing great things.    You will be surrounded and loved by others just like you.  It shall be a great fellowship of those deeply invested in patient empowerment.    

And then you shall go forth and wear your jacket at other conferences spreading the word about the importance of patient data access and truly patient centered care.  And sometimes you will be the only “patient” in the room.

But you will be brave and you will be proud, for you are a member of The Walking Gallery.