Who taught you how to be a patient?

On a recent Saturday my son Isaac, Ben Merrion and I filmed a short video about Electronic Medical Records.  Our video was called "Your Medical Record Follows You."  You can vote in favor of it here.



It is part of the "What's in Your Health Record? Video Challenge" from Challenge.gov  There are many videos that were submitted and they address the need for patient medical record access.  This is a cause which is near and dear to my heart.  I urge you to peruse the videos listed.

Our video was about a very special day last year when Isaac and I went to a local clinic to get his eye checked for pink eye.  The clinic was DC Immediate and Primary Care.  I was amazed when we entered the facility.  The receptionist handed my five year-old son a netbook and asked him to begin building his electronic medical record profile.

I was so happy!  I speak about the empowered patient at venues nationwide, but now it was happening right in front of me.

Isaac filled out what he could and I did the rest.  We submitted his profile online using WiFi.  Then Isaac settled into his chair and began researching snakes on YouTube.



Soon it was time to be seen by the doctor.  Isaac carried the netbook into the appointment.  The doctor checked his eyes then we googled "Conjunctivitis" and talked about his condition.



Isaac and I left very happy about his experience.  A couple of months later we went to his regular check  up at Kaiser Permanente.  Isaac sat impatiently on the examination table as his doctor typed information into his medical record.  After answering a few of her questions, Isaac jumped down off the table, walked over to her keyboard and asked her, "When is it my turn?"



Before Isaac and I created a video about this story, I painted a Walking Gallery jacket about it. Here my son Isaac is holding the netbook we used at DC Immediate and Primary Care surrounded by classic toys.

Now, when he plays doctor he expects to see a computer or tablet being used. This made me think of how we teach our children to become empowered patients. Do you remember playing with your Fisher Price hospital? Did you play more with the doctor or the patient? Was the care a balanced partnership? Playing Operation as youngster gave me the impression that surgery is a joke, medicine is about making a pile of money and avoid that buzzing alarm at all costs.  The toys we choose and how they are designed very much impacts the way our children relate with the world around them.  I want to see a doctor's kit with technology included, not a black satchel with an antiquated head mirror.

If you ask to see a toy cash register at Child's Play (the toy store I have worked in most of my adult life), I will show you a register with a working calculator and a pretend credit card function. I would never show you the 1970's Fisher Price cash register with side crank handle and mechanical bell. It is no longer available. Registers are not made like that anymore.  So, why does every doctor's kit I see look like it came right out of 1970? We can do better. We owe it to our children. I respect and revere our youth. They are so capable and flexible in their thinking.

We teach our children through play.  If you watch this video you will see Isaac pulling a little wooden toy dog.  It has a carry pouch on it that is labeled HealthIT.gov. Isaac the patient, pulls this dog along and it follows him. 

7 Different Dresses: Thoughts on TEDMED and Girl's State

Recently, I was invited to attend TEDMED. TEDMED is an annual conference focused on overcoming problems within healthcare. This year it will be hosted in April at the Kennedy Center in Washington, DC. Often described as a “gathering of geniuses,” it is an invitation only vetted event with a $5,000 per attendee registration charge.  Due to this, it is an economic challenge to attend if you are a patient advocate.

I was so excited to have a chance to go. I would be allowed to paint onsite and present the patient view. This was a really big deal. After being invited, I was reminded of an opportunity I had in my youth to attend Oklahoma Girl’s State. You see, I had been in this position before as a girl.  I been invited to an invitation-only event where most attendees where economically far above my station in life.  I knew that the individual voice you bring to such an event can shine far above any preconceived standing within society.  You may be no one of importance when you walk through that door, but the event is created and informed by the voices that attend.

It was spring of 1990. I was a junior in high school and it had been a very hard year. Earlier in the fall, I took my sister and we fled an alcoholic and abusive father. We spent two weeks in a county-run youth home while still attending our high school classes. The other students would look upon us in the crowded hallways not sure of what to say. My mother agreed to divorce our father and a restraining order was placed upon him.

We were poor. Both my sister and I worked part time to pay for our clothes and school extras. Our mother would give as much as she could but she was a hospital housekeeper working at minimum wage, so every dollar was dear. Things were tight and we were scraping by. That spring, I was called to the school counselor’s office. 

“You and Heather Pray have been selected to represent Sapulpa High School at Oklahoma Girl’s State,” the counselor said. I looked at her with surprise as she continued, “Girl’s State is a week of student congress hosted at a university. Girls who have good citizenship skills are selected from every high school in the state of Oklahoma to represent their schools. It is an honor to be selected.”

I left the counselors office filled with joy, clutching the registration paperwork in my hands. Girl’s State! I was so happy, but then I began to read the papers and grew concerned. How could I afford to go? I would need to find transportation to a university many miles away, and according to the paper work I would need a wardrobe consisting of 7 different dresses. Girls wore dresses all week at Girl State.

I had been in Speech and Debate for a year so I owned two performance dresses. Our family attended Church, so I had a very nice Church dress. I could not afford to go shopping for more. What would I do? I was feeling very like Meg in Little Women with no gown for the ball. Fortunately, I was blessed and several of my friends offered to let me borrow their best outfits. Heather Pray and her parents offered to transport us to the college for the week. 

All the economic barriers were surmounted!  I was going to Girl State!

It was quite the culture shock when I got there. Most of the ladies running Girl State had been part of sororities and we were taught an equal mix of student government and etiquette such as the proper way to sit and place one’s feet while seated on a dais in a dress. We were also taught quite a few songs that felt straight out of the 1950’s such as “You got to be a Girl State Gal to Amount to Anything!” and “A Boy and A Girl In a Little Canoe.” The mornings were filled with pep assemblies with camp fire songs and the afternoons were lessons in government. In order to learn about the political process, we created a two party system: the Boomer party and the Sooner party. Soon campaigning began for Sooner and Boomer candidates for governor.

I decided to run. With the help of my campaign manager Jammie Kimmel from Lawton, Oklahoma, I won the Sooner party nomination for governor. We then began the fierce campaign of trying to win governor of Girl’s State. We made campaign posters until late into the night.  Things were going well and then the time came for a debate in front of hundreds of girls. I had never presented before so many people in my life. 

I remember staring into the endless crowd as I answered policy question after policy question. This would be the deciding debate. Then they asked the hardest question of them all: “What is your stance on abortion?”

I paused for a few seconds, while thoughts roared within my mind. Time spun through years of my life. I was a girl who could not afford to be here, wearing borrowed dresses. I was a child who had never had insurance coverage and dreaded every sickness. I was a daughter who fought off rape at the age of nine.  My heart swelled within my chest and I answered: “Regardless, of what I would choose to do within my own personal life, I firmly support the right of a woman to choose medically what happens to her own body.” It seemed the silence that followed lasted for years as blood rushed within my ears. 

I lost the race for the governor, but I had discovered something very important about myself. No matter what the venue, I will be true to my beliefs in supporting rights of those who are oppressed. I will be that poor, abused girl. I will be the patient who suffers while wondering how to pay the rent. I will be the caregiver who watches her loved one die.

I will be all of those things while listening and painting at TEDMED.

Slides and Ladders

Some people think we live in linear time. Those of us who have sat up with the dying ones know better. We know that as the weeks; turn into days, the trudging march of death limps on and the mind escapes. Our loving father or mother might become a child again as liquid fills their lungs and they gasp for breath.  There is a reason so many last words on the battlefield are the endless echo, “Mommy, Mommy Mommy…”

And as our loved one’s mind returns to youth and fairer days, so do we often do as well, seeing vivid memories of days gone by. It is like this outrageous game of Chutes and Ladders that is played upon a deathbed. We progress forward with each a gasping breath to our end, only to fall back in time within our mind to lollipops and summer days.  

This is “Slides and Ladders, “ Linda Stotsky’s jacket story for The Walking Gallery. 

Shall I tell you Linda’s linear life? I can tell you she was a good child. She is a mother of three. She dedicates her life to healthcare. She is @EMRAnswers on twitter. She personally saw to the installation of electronic medical record systems, knowing full well how positively they could impact care. Then she focused on HIE (health information exchange) implementing the first payer based HIE which included e-prescribing in Tennessee to help improve coordination of care. But before she did all of these things she was a loving daughter.

She was a child who loved her uncle I.O. Silver who was a compassionate doctor.  Every time she visited she would sneak down to his office and take a lollipop. At 13 she was a candy striper who helped the sick at the local hospital. As a teen she became a drummer and filled the home with music. 

She had her first two children when she was young, and grew into a woman at their side. “Mother” was the greatest job she ever had. Later she would have another child who was a child of her heart she named Micah from the proverb, “justly, love mercy and walk humbly with your God.” At 14 months they found out Micah had NF1 (Neurofibromatosis-1). It is a mysterious gene disorder that affects one in 3- 4,000 births. Many afflicted with this disease have benign tumors that grow at nerve endings throughout the body. Most often a symptom of this disorder is 7 or more café-u-lait colored birthmarks greater than 1.5 cm. Linda and Micah spent years informing others about this disorder. Micah has a mild case of NF1 and thankfully is tumor free.

When not caring for her children Linda spent years working in the medical field. She was an administrative assistant to a private psychiatric hospital, then a clinical practice manager. She waded through reams of paper and medical records constantly on the phone arranging pharmacy changes and trying to contact patients.

During this time she also became her mother’s caregiver. She juggled taking Micah to preschool and overseeing her mother’s care in the nursing home. Care coordination was non-existent. She became her mother’s walking medical record. Her mother was routinely left without needed medications and Linda would have ask to see the orders and administration record. She was constantly fighting for reinstatement of orders and proper care. 

Linda would often have to rescue her mother “Against Medical Advice.” She would check her out of the nursing home and into a hospital to get her mother stabilized.  The years went by and Linda saved her mother again and again.  Micah got so used to the hospital visits he knew where toys were kept at each facility.

This was their life: preschool, work, home and hospital. Up the ladder they went. Stabilize the patient, and then down they went again. Finally the day came when the doctor said it was time to let pneumonia run its course.  No more saving.  It was time to welcome the old man’s friend.  So Linda sat at her mother’s side for three days and watched her die.  The morphine would drip and the breathing would slow and each of them would visit another time within their mind. 

Why call this Slides and Ladders?  As a child playing Chutes and Ladders it always bothered me that the ladders never rose up to meet the slides; there were so many spaces between.  The game was so long and it seemed an eternity of rolling the dice, plodding along and only occasionally zipping ahead or falling behind.

In death it all combines.  The ladder, the slide, the woman and the child all exist within one moment.  Time stops.   Roles are revered and a child becomes the mother. With such grief she sends her charge into that dark of night, comforted by the milk of the poppy and nighttime prayers.

And the night watch never ends.  As the years go by, Linda relives these days within her mind.  Wondering how it could have been better.  Why not rescue her mother one more time?  Why listen to the doctor?  Again and again she climbs the ladder.  And within her sleep she slides and calls out: “Mommy, Mommy, Mommy…”

Care Innovation Summit 2012: a conference report in three paintings

 It is the function of art to renew our perception. What we are familiar with we cease to see.

- Anais Nin

On Thursday January 26^th, I attended the Care Innovation Summit in Washington DC. 1,000 registration slots for this event were filled within 24 hours. I was able to attend this event as a member of the media. I would report on the event live via my twitter feed, and paint about it.

I set up in the back of the room next to the tech team. The light was so low in the space that I could not tell the differences in purple, black and blue within my palette.  One member of the lighting team came over concerned about the lack of light. He said he would do what he could to make it easier to see.

The room was grand. The stage was so far away that I could see few details. As the light dimmed even farther, I began to paint on patient advocate Katherine Arbanasin’s jacket. She could not be there that day. Nor was any patient speaker.  As I painted this, 40 speakers came and went upon the stage. 17 were doctors, at least 8 were CEO’s, another 8 worked at CMS or HHS and two were nurses. In panel after panel, ideas were considered and feedback sought, but not from any patient.  The closest this summit came to providing the patient voice was Amy Berman, a nurse who has revealed publicly that she has cancer.

The summit was peppered with high energy moments from Todd Park, Aneesh Chopra and Atul Gawande. But the saving grace for patient participation was social media. The event was live streamed and the twitter feed was actively promoted. The hastag #cisummit was listed on every page of the program. I think that was one of the most innovative elements of the conference.

I painted Katherine’s jacket: “Welcome to Change Mountain!”

I am a big proponent of determining the meanings of the words, and when I read the conference title I saw it in word pictures.  Innovation is: to change.  Summit is either a meeting of great leaders or the heights of a mountain. Since patients were not invited, and they are the most involved participants in care, I decided this summit must refer to a mountain…

So high upon the risen stage one figure stands with his innovative light bulb of thought in hand. He appears in silhouette, too far away to make out any details. The bulb in hand is a classic incandescent bulb, the type that has been in existence for over 100 years.

Below the stage a crowd of patients stare upon the viewer. Front and center an old man holds up the Medicare donut hole while other patients try to staunch the flow of funds. This image referred to acting administrator for CMS, Marilyn’s Tavenner’s speech in which she recited a litany of accomplishments of CMS and HHS in the past three years. To the old man’s right hand a woman stands with a Health Reform banner in hand. She fought to support health reform legislation that will go into effect in 2014. She waits stoically for her chance at care as the blood pools at her feet and a small band-aid covers her wound.
 

Marilyn Tavenner went on to speak about a truly innovative use of data capture. To the left stands a man with an open laptop. The screen reads hospital compare.hhs.gov. Here is a site where clinical data is used side by side with patient satisfaction scores to determine where patients can get care.

That is innovative thinking.

Patients can make informed choices using easy to access aggregated national data sets.

To the far left is Katherine herself. She is reaching for the tools of technology so she can participate in this conversation. This is the only way that Katherine can be part of this. She is sick within a system that forces the sick into financial ruin.

Behind the triptych of Health Reform, Medicare and Hospital Compare, is a crowd of patients staring at the viewer. They are listening and using the tools of social media. In a far back row of the crowd, a patient raises one arm with an apple in hand as the other hand clutches a ruler to his chest. He represents the power for positive change if we combine amassed knowledge with proper measurement guidelines. He also represents the many United States teachers who have seen wage increases slip away in ever-spiraling healthcare costs.  

Later in the morning, there was a panel discussion with four doctors and a CEO. One speaker caught my attention when he stated he learned all he needed to know about treating patients from his clients under the age of five.

What wisdom to impart before this crowd!

Unfortunately this inspiring statement was followed by many speeches bemoaning the demands of non-compliant patients. I wonder how different that panel would have been if they had included an actual five year old. I could see a little boy dressed in a small suit upon the stage, requiring speakers to use plain language that anyone could follow. The child would ask the frank and powerful questions that come from a mind pure of thought and free of doubt.

During a break a member of the tech crew tried to refocus an emergency light and point it toward my easel so I could finish the detail on this piece of art. But it was too dim to see clearly within the summit space. 

So, I began work on another jacket. This is EBM (evidence based medicine) a jacket for Trenor Williams, MD.  Trenor is a founder of Clinovations in DC.  He is a kind doctor, who cares deeply about the intersection of technology and medical practice. When I began this painting, I painted a patient holding a light bulb of innovation within the piece, but I re-worked the image to be a dissection T-pin.  An adult male patient, a young girl patient and a doctor hold this T-pin. Whist the patients look at the tool of medicine within their hands, the doctor stares upon the viewer with worried candor. He knows that shortened appointments and little follow-through have replaced the great science that the patients believe is used within their lives.

 Many a doctor spoke upon the stage this day. I heard a deep yearning within them.  They were not demanding another new innovation but instead wanted best practices upheld. How could they implement a scientific method of care if not given time for appropriate charting and repetition of tasks? How can they tell if a care procedure results in good or ill if there are no double checks? In rush to embrace technology, tried and true methods of research using dissection and autopsy have been tossed to the side and we are all the poorer for this lack of knowledge.

Then it was time to break. I went into the hall and grabbed a box lunch. Small groups of like-minded individuals congregated throughout the hall and tweet-ups were staged within moments. I went back to my easel and ate with lighting tech crew from the hotel. We each sat beside our labors. They wore the back garb of any tech team and I ware the black dress of an artist who paints about medicine. I spent my lunch answering their health policy questions based upon the speeches they had heard that day. Then we talked of how it applied to the citizens of DC.

I could think of no better lunch companions.

After Lunch I began my final jacket.  This is Jason Bhan’s jacket: “Not Lovin It.“ Jason is a co-founder of Ozmosis and currently is Medical Director of Medivo. He told me his tale in those last moments of lunch. 

He had always wanted to be a doctor since he was a small child. He went to school and dedicated his education and life path to this goal. He was very interested in public health and was determined to help people. 

Then he began to practice medicine. 

It felt more like McMedicine then the kind of medicine he had hoped to practice. It was bundled and packaged for speedy delivery. The CPOE or CDS model could mimic a fast food register, if used by rote. It was sad how many patients wanted to super-size their prescription with unneeded antibiotics. So I painted Jason thus. He is a young doctor in a fast food uniform. His face is crestfallen, head bowed. The happy meal, once a joyous promise of childhood, now revealed as a vacant box with only heartbreak left inside.

So Jason joined the world of health technology, determined to create a future where patients could be treated while doctors would have a meaningful and fulfilling professional lives.

Those are the messages I heard at the Care Innovation Summit. 

What was the most innovative takeaway of the day? Practice medicine as a child would have you do it.  Be open and honest in the bright light of day, and don’t you dare break those children’s hearts.  Whether patient or doctor, CEO or nurse, we once all played in the same sandbox. If any true innovation is to come of events like this one, it will not come from thinking out side of one box, but instead playing together in this one. 

Bridging the Great Divide

It was time to choose the picture.

Facebook has been rolling out its new Timeline format for a quite a while. Two days ago, I decided to take the plunge and create my new page. Ah, but what picture should I choose?  I settled on the live conference painting: Bridging the Great Divide from Health 2.0 October 2010 in San Francisco hosted by Matthew Holt and Indu Subaiya. 

Upon posting the painting as the “cover” of my page, friends asked to see the explanation of the piece. To my dismay there wasn't a post. Health 2.0 had been hosting a video of my explanation on their site but it was no longer available. It was time to explain Bridging the Great Divide.


(***Thankfully soon after posting this Ramin Bastani came to the rescue.*** 
He uploaded his I-phone recording of the speech in its entirety.  Thank you so much Ramin!!!! So I am inserting the speech into the blog.)

(The speech is transcribed below, the blog explanation is in smal type font.)


"I love Health2.0.  I just love it.  I mean you should clap for yourselves; you are amazing. I go to a lot of medical conferences; I go to a lot of patient centered conferences. I go to a lot of government conferences, I testify, but what I love about Health 2.0 is you folks don’t sit down.  You stand back there constantly researching and tweeting, talking and kibitzing and trying to figure out how to make data work and it is beautiful. That is what innovation is all about.  You refuse to sit still.  It is astounding and it is beautiful.  When Health 2.0 Goes to Washington happened I was amazed. You could tell the gov. folks opposed to the Health 2.0 folks because the people seated in the plush seats oftentimes were governmental. So you are a very amazing crowd.
I have been listening to you for three days and as I have listened to you I created a painting.  That painting is called “Bridging the Great Divide. “ Because a lot of what we are talking about is how do we communicate? How do we bridge communities?  How do we take left-brain thinking and right-brain thinking and combine them? 


So as you look at the piece you will actually see there are two brains.  We have our right brain our very emotional, creative and artistic side.  And that brain is basically a tree of knowledge.  The tree of knowledge has an apple and that apple also is an eye, because knowledge must have vision.  It doesn’t go anywhere if you cannot see what you are supposed to be doing."

(The left side offers a vignette story of Diem Brown and her company MedGift.  Diem was one of the presenters that week and I painted her sadness. Diem was only 23 when she was diagnosed with ovarian cancer. She found herself adrift with no one to ask for help. Wedding announcements and baby shower invitations from here friends were arriving in the mail, while Diem was struggling to pay for chemotherapy wigs and to arrange drivers to her various medical appointments. She thought, “Why is this so hard? Why isn’t there a registry for cancer sufferers like those that exist for brides?” Due to Diem’s valiant effort such registry now exists, and it is called MedGift.)

And then I don’t know if anybody heard the presentation about creating a cancer gift registry.  It was an incredibly powerful concept.  Which is take the most wonderful day in your life: the day you got married, that day you were in that bridal gown and it was so beautiful and combine that with day you found out you had cancer, and your hair was falling out and you cannot pay your medical bills.  How do you get people to help you?  That’s brilliant; let’s create a gift registry for those people, because those people need those gifts so very, very badly.  They need so much help.  So I combined it into a painting.  (Applause) Yes, isn’t it beautiful and tragic?

So if you look at this we also have the coyote.   As Jeff Goldsmith started this whole thing saying his animal spirit is the coyote, but I put it in sheep’s clothing.  Because you do not look at Jeff and think initially he is as powerful as he is.  But then it is like, “Wow, this man is disruptive.”  And you know, that is the kind of inside disruptive that changes things.

Then as you look at this there is a classic radio tower putting out waves and waves of data, beautiful circular waves of data that are going everywhere.  It encompasses all of us.  Also this looks like starry night, this looks The Scream –I got a lot of that.  It also addresses mental illness because under the under current of a lot of these conversations was that people are sad they are not taking their drugs, they are not compliant, they are depressed and how are we addressing mental illness within data access?

As we look at our bridge and it is San Francisco, the beautiful bridge, you know bridging areas bridging geographic regions.  So we have actually all those wonderful dates that we were talking about.  When was the CAT scan developed?  When was the MRI? When was the x-ray developed?  When was Gorilla Glass developed?  Do you know what Gorilla Glass is?  That is the covering tiny micro-thin glass on your droid and it might be on your I-pad they are not going to tell us. It was sitting in a vault in Corning Ware since 1962 waiting for technology to catch up.  And that is what you guys are doing right now.  You’re the catch up.  All of these amazing things are out there that you need embrace and teach us how to use correctly. 

So we have a little baby and you know what that baby is doing?  That baby is crossing what is called the visual cliff.  Can you walk on glass?  Can you take a step forward when you don’t know what is supporting you?  Do you have faith in the technology that you are speaking about even if you cannot see it nor prove it nor say that it is currently effective?  Can you convince others about how it is going to change absolutely everything? 

(Thanks to Derek Wade for his post “When Promoting Transformative Change, Have Faith in Your Convictions”  Prior to Ramin's upload of footage, Derek' quotes pertaining to this sectiion were the only remaining elements of the speech.)

     

So this mobile device has sacrificed its glass so a baby can cross, but it is still doing its job.  It is going downward.  It’s letting go of its circuit board and it is becoming a life raft for all us that at home online, researching trying to get help for our diseases.  That mobile device, mobile technology is going to change everything because those of us who are swimming in waters that we don’t know how to get out of, it’s saving us.  Those people in our society that are the most underprivileged, inaccessible to care, you know what they have?  They have a cell phone, and they are texting and you can reach them.  You can communicate with them, and bring them to be part of this and get rid of this great divide.  

Then as we go deeper in, does anyone have arachnophobia: fear of spiders?  Okay, there is a spider motif within this painting.   As you notice the bridge becomes a web, over here we have a black widow concept.  The black widow is a web spider; she waits for her prey.  She waits for it to come and for many, many years that is why we called it the web.  It just sits there, it does not go out and find people, and we just wait for them to find us.  We have to change that.  That is part of what innovation is.

Over here we have a gentle man who is actually a brown recluse.   They are called fiddle backs.  They are hunter spiders.  You don’t hear them coming and they are coming, and they are going to get you if you do not watch out.  One of the things is watch out.  Things are changing; embrace the innovation that is coming.

But also we heard some amazing things about sex in the last couple of days.  So we have our qupid.me device and a beautiful woman without a face.  Showing you what he has for you.  And that is a lot of what we do with those mobile apps.  How can we communicate, how can we bring her into this communication.

(The babe is trying to reach for a beautiful woman without a face. She in part represents the story that Ramin Bastani founder of Qpid.me told at the event. He was part of the unmentionables session. His service provides texts detailing a list of current STD’s or the lack thereof within a 12 month window. He called it with boyish good humor "a modern, flirtatious, I'll show you mine, if you show me yours."  She beckons with her heart in her hand as if to say: “Here know all there is to know of me and see if you love me still.”) 

As we go deeper in, I heard a lot about privacy. So I have this apple peeling around Deborah Peel.  And she has got a statue of Liberty and it is off it is smoking.  The light is dead.  And she is holding a lock instead of a book.  That is what privacy is about; it is about closing down information and making it not accessible to us. 

(Deborah Peel symbolizes the many conversations about the importance of privacy in health. But privacy over knowledge is not desired by all. Many of us want know about our health and share that information with others. )




Then we have a brain on the other side, the analytical side.  I have been hearing a lot of ROI, ROI… You know it is more than that.  Return on Investment is a nice thing, yes, but we are talking about saving people’s lives.  I heard a decent amount about pills too, about pharma.  And how are we going to make sure people are medically compliant and take their drugs.


I do want you to look at this there is not a hell of a lot about medicine in this painting.  And there is not a lot about patients.  There was a lot of talk about innovation and data and access, but we are not necessarily talking about where that is taking us and how are we going to help people.  I want you to think about that really strongly.  

Because the reason we are doing all of this is to help those patients, to help those people, to make this time in their lives that is absolutely the absolute worst time in their lives better.

(This painting was purchased by Ron Gutman founder and CEO of Health Tap during the auction at the Health 2.0 event in October 2010 and post about it can be viewed on their site called Bridging the Great Divide. The post explains the intent of the piece that we must bridge the right and left brain thought.  We must use the tools of technology to save lives.   I hope every day he and his team are inspired by it upon their wall as I will be inspired viewing it on mine.)

The Waiting Place

Oh, the Places You’ll Go, Dr. Seuss

“You will come to a place where the streets are not marked.

Some windows are lighted. But mostly they’re darked.

A place you could sprain your elbow and chin!

Do you dare to stay out? Do you dare to go in?

How much can you lose? How much can you win?”

Sonnet 116, William Shakespeare

Let me not to the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove:
O no! It is an ever-fixed mark 
That looks on tempests and is never shaken;
It is the star to every wandering bark,
Whose worth's unknown, although his height be taken.
Love's not Time's fool, though rosy lips and cheeks 
Within his bending sickle's compass come: 
Love alters not with his brief hours and weeks, 
But bears it out even to the edge of doom.
   If this be error and upon me proved,
   I never writ, nor no man ever loved. 

A few months ago I spoke to Ross Martin at an ONC event. Ross has a background in medicine and was an OBGYN before devoting himself to healthcare policy.  He sat a conference table with a pile of paperwork before him.  Although his shirtsleeves were rolled up, he still looked professional in his dress shirt with matching tie. 

We were both very tired from a long day.  I had painted two jackets and delivered a keynote.  He had been there as a representative of Deloitte and just finished his final meeting of the day. I knew of Ross, although I did not know him personally. I had seen his HITECH: An Interoperetta in Three Acts and The Meaningful Yoose Rap. I was so excited to see another artist address the intricacies of Health Information Technology within their chosen medium. I asked him that day if he would write a song for our upcoming healthcare data-sharing puppet show at Health 2.0: “The Rainbow Button Initiative.” He said he would. I also asked him to join The Walking Gallery.  He said he would do that as well.

Then he began to tell me the story of how he met his wife Kym. In 1999, Ross was attending his first Ballroom dance competition. He did very well. Then he met this lovely woman with a long and gracious neck, a dancer’s neck. He wanted to dance with her that night. He taught her quite a few of the slower dances and they talked till 2:00 am. Kym told Ross so many things that night. She told him of her challenging childhood and of her diagnosis of a type of cancer called Hodgkin’s Lymphoma at the age of 17. Kym explained that due to the impact of her cancer treatment, there was no way to know if she was rendered sterile and that if she did conceive, she faced a higher potential risk of developing melanoma. She told him everything and stripped all the protections away from her soul letting Ross see her in all her tragic beauty.

After the “Ball,” Ross began to court Kym. Both had been in prior failed marriages. At first they were timid in their love; as a heart is want to do once it suffers a burn. But after several dates and six weeks of courtship, Ross asked Kym to marry him. She said yes. They did not set a date, instead deciding to enjoy a long engagement.  

Then the tempest struck and they were sent spiraling. A routine test led to a diagnosis of a return of Kym’s cancer. Ross and Kym began the process of additional tests and went to see several specialists. Ross had many contacts in the medical community and they went to the best doctors in the field. It was 1999 and the internet was only taking its first steps toward medical transparency. But even then, one could find out that a reoccurrence of Hodgkin’s Lymphoma was dire news.  

After two weeks of appointments, additional tests costing over $10,000 and spending those timeless days in the waiting place, Ross and Kym were told that most likely the cancer had not returned. The doctor told them an image had been overzealously read.  It was scar tissue, not cancer. The facility had no access to Kym’s older films from years before. If a HIE (Health Information Exchange) had been in place and such files had been stored and transmitted, Ross and Kym would not have spent two weeks in torment in the waiting place wondering if a death sentence loomed above them.

With this reprieve fresh in their minds, Ross and Kym decided the time for waiting was over. Two months later they married on the beach in Hawaii. It was beautiful and magical, and was soon followed by more joyful news. Kym and Ross realized that Kym had conceived a child on their wedding night. Nine months later their son Taylor was born.

So I painted this jacket for Ross “Love is an ever-fixed mark.” 

I was inspired by Ross’s story and Shakespeare’s sonnet. I saw their love as a lighthouse on the beach, and ever-fixed mark. They are a fixed a moment in time, a moment of love eternal.  Hodgkin’s Lymphoma cells float across the sky, as they dance.

But a marriage of two minds should have two jackets, so I also painted a jacket for Kym: ”Knowing the Score.”

In this jacket a lovely Kym looks upon the viewer. Her long neck is beautifully displayed and if you are familiar with the disastrous effects of Hodgkin’s Lymphoma you know what can happen to such beautiful necks. This is a disease of the lymphatic system.  The lymphatic system is a network of conduits that spread throughout the entire body ending in nodes. Nodes are found in many places but are very prominent in the neck.  Painless swelling of lymph nodes is a very important symptom in this type of cancer. If left unchecked, this disease spreads throughout the body and leaves a disfigured mound of flesh in place of a graceful neck. I also chose to depict the lymphatic system as a networked series of circuits. That network spreads throughout Kym’s body and connects with the code behind her.

Ross is playing on his guitar and as his fingers strum the chords a stream of code descends. Ross is doing everything, and I do mean everything, he can to promote positive change in the world of healthcare. He will wear a suit and head to meeting after meeting to promote a better understanding of HITECH, EMR’s and data sharing. In his free time, he will write about it, sing about it and create videos to elucidate the topic.

Behind them both is a Dr. Seuss sky.  “Oh the Places You’ll Go!” is a favorite book of Kym’s.  I thought that telling.  It is book that warns us that many people get stuck in the waiting place of indecision. It is a book given at graduations, but it is also a book about confronting death.  You see Ross and Kym made a choice.  They decided to stop waiting.  They decided to live and love and do everything in their power to help others do the same. 

All Fields Required

The lobby in my building is under renovation.  It was pretty to begin with, but the management of the building has decided to make it glorious.  Now, when a friend comes see me or a potential tenant waits within the lobby they are surrounded by beauty, comfort and welcome.  The management of my building understands that first impressions are important and affect the entire experience.

Design matters.  Words matter.  The equivalent of my welcoming lobby to a webinar or conference is the registration page.  Have you taken a good look at your registration page? The way organizations and events design their registration screen reflects their view of the attendees.  I filled out quite a few registration pages in the last two years and have come to dread a simple phrase: “All Fields Required.” 

“Please list your terminal degree.  Please list your medical facility.   What is your position in your organization? How many beds are in your hospital?”  As I stare at the blinking cursor, I wonder if they even want me here.   Where are the questions for patients? 

And try as I might to make my high school diploma and patient experience fit within the field for terminal degrees, I cannot.   I must give up and contact the conference or webinar and beg for a manual entry. 

It seems as if the event organizers are saying:   “Yes, you can be part of our event but patients must enter through the back door. “

Time and time again, I have heard organization say they want to include patients, they want to address disparities, but yet what has been done to include us as an intrinsic part of the process?

When I am in a meeting, be it a webinar or a physical conference, I am there as a patient activist.  I may be tweeting, blogging or painting, but I am there to fulfill the honorable duty of representing the individual patient voice.  I will ask the hard questions, I will make myself the fool, if only to voice the concerns of those countless ones who suffer beside me.  I have neither an organization to represent nor clinical job title that could interfere with my singular purpose of voicing the patient view within the healthcare discussion.

And I am angry.

I am frustrated that my compatriots and I beg to attend conferences and events when we should already be included on the master list.   Often we are invited as only an afterthought.  If we truly wish to see patient-centric care in this nation patients must be included in the design phase and not as part of the epilogue. 

I will take the phrase of the establishment and twist to include a new meaning.  If we are to change healthcare, then indeed “All Fields Required!”

I want to see artists and poets, mechanics and clerks at conferences.  I want them to stand before the crowd as the patients they are and bring the voice of truth and pain.   I want to see a board of directors with a single mother that is caring for a sick child.  I want to see ivory towers leveled and those precious white stones used to pave a path for the sick, injured and suffering. 

Indeed, I demand you use that phrase to plant seeds.  There is not a patient among us who could not be a fertile bed for ideas and solutions to the current problems in health care.  Leave no field fallow within this debate.  You want to create measures that track adverse events and medical errors?  Involve the patient.  Ask Trisha Torrey who would have caught her diagnosis before Chemotherapy; no one caught it but her.  Ask Alicia Cole who realized the spot on her flesh wash not a black dot of a sharpie marker, but instead the threat of imminent death.  She would tell you it was her mother who saved her life.

I dare you.  Live by your words.  Make all “fields” required.