Measures

Yesterday I gathered my easel and my testimony, and descended into the conference room depths of a hotel in Silver Spring, MD.  I walked into a room defined by a U shaped conference table and row upon row of empty chairs.  This was the meeting of NCVHS or NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS QUALITY SUBCOMMITTEE HEARING on Measures that Matter to Consumers.

Matt Quinn, on behalf of Drs. Blackford Middleton and Paul Tang co-chairs of the Quality Subcommittee, asked me to testify from the patient view at 2:45pm.  I arrived at 9:00 am and began to paint.  Those assembled were pleasantly surprised that I would be painting the meeting.

This is my painting “Measure for Measure.”

This painting is bisected in two directions.  The floor is a spiraling turbulent flow of ideas while the blue wall in the distance is an upright expanse of bar charts and tombstones.  It is divided again by the two opposite sides of the conference table.  One side consisting of experts clothed with authority; on the other side patients sit half naked in their gowns. 

Several thought leaders in the world of healthcare and industry provided the expert testimony: Joyce Dubow from AARP, Christine Bechtel from National Partnership for Women and Families, Lynn Quincy from Consumer Union, James Sutton from Rochester Community Health and Jake Flaitz from Paycheck.

Christine Bechtel was amazing. 

She presented from the patient view.  She told a narrative account of the hours she spent trying to get a simple answer from her current doctor.  She chose this provider based on his decision to use an EHR system when few providers were doing so.  Sadly, rather than realizing the ability to use this technology for expanded consumer access it was being utilized as a glorified paper record.  Christine decided to try to find a new doctor online using available public data sets combined with her immense knowledge and skill from her work in the world of HIT.  She spent over 8 hours on it and was still not successful.

Joyce Dubow told us that the average patient has not the background nor resources of Christine and asked us to imagine their challenges.  She spoke of the importance of providing patients “just in time” information in order reduce the stress of the cognitive load.  I wonder how much the process of medical education would change if we encouraged "just in time" information access among providers as well.

Next up was Lynn Quincy.  She works in the division of Consumer Reports focused on healthcare.   She stated that shopping for health insurance was a gateway for patients to understand quality.  She also mentioned a surprising finding on their internal surveys.  When asked whose advice would the consumer seek before making a choice on a policy, many respondents said they would ask their mother.

James Sutton and Jake Flaitz presented together so I combined them into one man in the painting.  They had some very interesting things to say about public private partnerships and the ability of such partnerships to improve overall health of the citizens of Rochester, NY.

Soon we broke for lunch, and I put aside my brushes to enjoy a meal with Jim Hansen from Dossia.  Jim is a great voice in HIT and we spent much of lunch talking about the sad state of autopsies in the US. 

When the hearing resumed, we heard from Heather Smith from American Physical Therapy Association, Dr. John Hough of the National Center for Health Statistics and Matt Stiefel from Kaiser Permanente.  Heather told us quite a bit about functional mobility measures. She is the young blond woman in the painting.  Dr. John Hough addressed us with perfect elocution as he described in depth the International Classification of Functioning, Disability and Health (ICF). He stated, “The overall aim of the ICF classification is to provide a unified and standard language and framework for the description of health and health-related states".  John showed a man with a hook hand trying to draw with chalk upon a blackboard.  He explained how IFC could depict this ability in a code while I depicted it in paint.

During this panel one member stated that our current search for measures reminded him of the time before people understood the concept of temperature.  We were still trying to figure temperature and should not be focused on which thermometer was best. 

We do not know what we are measuring.  

Then it was time for my panel.  The panel had several speakers including Dale Shaller from Shaller consulting, who works with AHRQ and Susan Madden and Rick Siegrst from Press Ganey.  Dale spoke first and explained his work with CAHPS since its inception.  I was so excited to sit beside him as several of my paintings focus on HCAHPS data.  He went on to explain a data trial they had complerted with a group of patients to determine which information patients wanted to use to choose a doctor.  Did they want structured data, patient comments or a combination of both?

Next I was speaking and this is my power point. 

Measure For Measure

View more presentations from Regina Holliday

I connected measures important to patients using quotes from Shakespeare.  I bombarded the group with a massive list of concerns gleaned by crowd sourcing my power point on SlideShare.  I accompanied the measures with powerful painted images supporting our concerns.  I may have been the only patient on the panel but I was trying to speak for the many who were not there.

Susan and Rick from Press Ganey spoke next.  They spoke about the large data sets they had amassed with their clients using CAHPS scores, natural language processing and sentiment analysis.  They pointed out that the analytic tools used in the retail and travel industry could be used in the world of medicine to help the patient experience. 

During Q and A most of the questions focused on Susan and Rick’s use of sentiment analysis.  The committee was also very intrigued that Dale’s explanation that when CAHPS data was combined with patient narrative comments, the narrative comments were considered of greater value than the CAHPS quantitative data. 

The panel looked perplexed, “Why would patients pick narrative over quantitative data?"

The committee then asked me a few questions. If I were to choose one Shakespearean character as a perfect patient whom would I pick?  I said, “The Shrew from The Taming of the Shrew because she questioned authority for most of the play.”

They commented on the powerful imagery in my slide deck and asked where it could be found.  I said most of my work was available on Slideshare and Flickr.  They also mentioned that perhaps art therapy could be a type of measure and we spoke about the powerful emotional release while painting and discussed how that could help patients.  I added that it could help providers as well, “I was at Avatar, a survey company, last year and we painted with a room full of providers.  They each painted their patient story and all was silent as they worked and the room was a holy space.  Many of the images were simple as they were created by untrained artists, but they were true and powerful.”

That was it. 

I had made 12 separate points in my speech covering patient created content, timely data access, disability, mental health, patient education, medical error, autopsy rates, health literacy, non-compliance, failure of the law to regulate, data aggregation and the demand that patients be included on panels.

The committee focused on Shakespeare and painting.

And that dear readers, is focusing on narrative over dry statistical content. 

This is the reason my sons ask me to tell them a bedtime story rather than a bedtime math problem.  The sooner we harness the power of the patient story and show we value "soft data," the sooner we will be able to grasp the value of quantitative data as well.
  

“Truth is Truth to the End of Reckoning

I do math homework with my son and we labor through problem after problem.  We work through all the steps until he finishes and then I make him check the answers.  It takes more time, but all the effort was for naught if we do not check the answers.

I think medicine in the US, as it relates to autopsies, could learn a thing or two from my son’s math homework.  In the last 20 years people did not stop dying, but we stopped checking on the reason why.  

In 1970 the Joint Commission dropped a requirement that hospitals perform autopsies in 20% of cases in order to maintain accreditation.   Since then autopsy rates have plummeted. In the United States hospital autopsy rates of 60% in the 1950s fell to 12% in the early 1990s and less than 5% in nonteaching hospitals.

The current rate of autopsies is at 2%.

There are several reasons for that.  Many hospitals have stopped offering autopsies altogether, the majority autopsies now conducted consist of state funded examinations due to probable wrongful death.

Private autopsy services are available but are mostly cost prohibitive. Going rates for autopsies range from $3,200 -10,000 dollars.  For complex investigation that involves multiple board certified doctors and investigators the price can quickly jump to $ 50,000.00 which is an impossible price for most families.  Even the bargain basement $2,000.00 autopsies and are far out of reach of many consumers.  Sadly, the most affordable autopsies are conducted by the least qualified.  Autopsies are done throughout our nation by gynecologists, internists, veterinarians and chiropractors.

Insurance does not cover autopsy in most cases. Death is a universal phenomenon yet it is not included as a step in our final process of care.  The average family now pays from $6,500 to 7,200 for funerary expenses.  Years ago the cremation rate was only 22% now it is at 54% as consumers must decide how to spend their money.  For this post I interviewed a funeral director that said in virtually every case where the family enquired about autopsy they quickly gave up when they realized the high cost. 

And the cost we are paying for a lack of access to affordable autopsy has an even higher price to our society.  Studies find that there is disagreement between pre and post-mortem diagnoses in almost 30% of cases. Think about that. As we delve ever deeper into the concept of evidence-based medicine we must reinstate a statistically significant autopsy rate.

When my late husband Fred was sick, I enquired at hospice about an autopsy.  Fred had a bone biopsy but the sample was too small to determine which type of kidney cancer he had.  I wanted to know so I called 1-800-Autopsy as was recommended by hospice.  They did not return my call.  After asking around I found out the price would be in the thousands, far more than we could pay with a funeral looming ahead. 

I gave up.

Today I spoke to on the phone to Vidal Herrera, the man behind 1-800-autopsy. He explained that the franchise of the company my call went to was most likely the Florida branch that folded around the time of my call.  Vidal is a kind man who has been trying to provide forensic care for people for the last 40 years.

After a back injury in 1984 for that ended his career in the county coroner’s office, he created a company to perform private autopsies.  There is a desperate need for trained pathologists in this nation.  Men trained like Vidal are a vanishing. A pathologist resident used to be required to perform 100 autopsies, currently it is 50.  And “perform” is rather loose term as most of the autopsies are rotations in wrongful death cases, where the student is not allowed to touch the body but still receives credit.  So we are facing a shortage of trained individuals.  In the current system, funeral directors are expected to do due diligence on the names they recommend for performing autopsy, while have no monetary incentive to do so.

On top of that we must deal with the sorrows and concerns of the grieving family. Since 911 1-800-Autopsy no longer flies to the body, the body must be shipped as cargo to the lab from locations across the country.  Families worried about a quick resolution and a funeral will often fold when confronted with this additional burden.

But this blog is about medicine and art.

All of this research on autopsy had me thinking about Leonardo da Vinci.  Many consider him the greatest artist of all time, but I wonder if he would have been as great without the 30 plus human dissections he completed within his lifetime. 

Vidal is an artist too he created this poster, but his preferred media is more in line with his profession.

For a number of years he was providing props for pathology in films and television.  Then he was asked to make a coffin couch.  He thought the request was a joke at first, but then he found that the person was sincere.  He created a team of artisans and they went to work and created the coffin couch.  Not long after he began showing the resulting artistic furniture in Los Angeles art walks and fairs.  Many people were impressed and said they would love to view his studio.  He responded, “I don’t have a studio, I have a lab.”

Vidal is hopeful that he will be able to fund scholarships to help future funeral directors with the funds raised by coffin couches.  I was very happy with symbolism inherent in his art that brings death back into the “living room.”  Once upon a time death was part of life, and not banished from the home or the halls of medicine.

Vidal is trying to help us appreciate the great knowledge death can impart if we embrace the journey.

Vidal also mentioned that he was asked to speak for the first time this summer at the annual funeral directors conference.  He had not been asked as the man who has tried to keep autopsy available for private citizens. He was invited as an artist who makes art out of death.

I could relate, sometimes to be heard you must try communicating in a new media.

"Earth Momma" a jacket for Matthew Browning

This a guest blog by Matthew Browning explaining his jacket story...

I was asked well over 50 times, maybe over 100, at HIMSS12 about my incredible Regina Holliday Jacket titled “Earth Momma”. As a member of “The Walking Gallery” I dutifully stopped, each and every single time, to share the story behind this powerful and provocative piece of wearable art. I wear it proudly, share it proudly and and eternally grateful for the voice it has brought to two very poignant moments in my life.

My response became consistent over time, building the story that lead to this jacket and finishing with the pictures of the people involved in these artworks. Due to the incredible responses received when relating this story, I have decided to write it down so that even more people may learn from it.

My name is Matthew Browning, I am a nurse, a nurse practitioner to be precise. But more, so much more than that, I am a husband, a father, a human and a caregiver to people, industry and our environment. I do not tolerate inhumanity, abuse, bullying or elitist disregard from our healthcare system, our industry leaders or our government. I champion the underdog, empower the patients and care for all equally from the indigent to the VIP. My story of “Earth Momma” goes as follows:

Hello, and thank you for asking about this jacket. It was painted by Regina Holliday, a well-known patient advocacy artist, who paints vignettes of a patient story on the jackets  and labcoats of doctors, CEOs and patients. I am one of the fortunate few who have two   of Regina’s jackets, and this one depicts the story of my wife, Phoebe, and our second birth story. My first jacket is called “Both of Them” and it depicts the very traumatic story of our first birth experience, the birth of our son AJ, 9 weeks early while we were traveling in Florida. We live in Connecticut. In THAT jacket there is an image showing the moment that my wife is being wheeled into the operating room. See, we presented into an ER in Florida on a Friday night because my wife wasn’t doing well, shortness of breath, swelling and just not doing well. We figured they would adjust a med or two and off we’d go, but no, they determined that she was pre-eclamptic and that they were going to “take the baby” right then and there. I was able to impress upon them that, as I say when telling this story, that she was a very complicated patient and if they cut her, they’d likely kill her, and we needed her history and chart from Yale’s High-risk pregnancy clinic in Connecticut. At 5 am on a Saturday morning we received an inch thick fax which informed, impressed and instilled a modicum of fear in the delivering surgeon. She wisely increased the team size and off to the operating theatre we walked. Now the scene from “Both of Them” shows the gurney being wheeled away with my wife on it and the Doctor turning to me, saying to me, “I have two very complicated patients here and if things go bad in there-Who’s my priority?” I explain while relating this story, that my knees went weak, I lost my breath and responded “Both Of Them”!

(Readers can see that story here http://reginaholliday.blogspot.com/2011/06/both-of-them.html)  (I’ve learned to add here- and they are now both doing very well :-)

I continue- So we are part of “The Walking Gallery” and there are about 130 of us. So, this past fall, at Matthew Holt’s Health 2.0 Conference in San Francisco, Regina called for “The Walking Galery” members to please show up and wear our jackets. well, sadly, I had to tell her “No Way!” “this would be totally inappropriate” and explain that this was only due to Phoebe being only a month away from delivering our SECOND child and I just could not, in good conscience, wear THAT jacket- No Way!  So, I explain, that Regina in all her wisdom simply suggested that I come to Health 2.0 and strip so she could paint me another jacket. I thought she was kidding, so when I saw her at Health 2.0 she said “take it off” and I said ‘Huh”? Regina said, I told you bring your jacket and I’d paint it... Whew! I was relieved, yet couldn’t part with one half of my only custom made suit, even for such an awesome artwork. However, I asked around and found out Macy’s had a clearance rack two blocks away, and lo and behold, destiny stepped in and had one that was a perfect fit! I presented that jacket to Regina who asked me to update her on the current story and I explained. “OMG, she (Phoebe) is doing so good! We have this huge organic garden, our own chickens for eggs, we are exercising, have a world-class medical team that collaborates and has all of her data, they check her like every two weeks and she is just beautiful, glowing, radiant- a real Earth Momma”

And so, I say as I spin around so they can REALLY look at the jacket, THIS one is called “Earth Momma”. Many are momentarily speechless, some in tears, some in awe but EVERY single person who has heard that story, and seen this jacket, is never the same. I then implore them to look up “The Walking Gallery” on Google and to keep their eyes open for other jackets from it, because EVERY one of them has a powerful patient story behind it. I thank them for their interest, show them pictures (of AJ now almost 4 years old and Beaumont now at 4 months) and I depart with a little bit of their love, their understanding and their hearts as a part of me- and I leave a little bit of my family, our story and Regina’s love with them. I am honored to be a part of Regina’s art and I am so very privileged to have Regina’s art, vision, compassion and love as a part of me. That’s my story, and I’m stickin’ to it. Peace and Love, Matthew (and Phoebe and AJ and Beau)

PS. Here is a interview while I am painting Matthew's jacket it is about data access, but I thought it a cool addition to the post...

Warning! Patients Accessing Data Can be Habit Forming

"Why does a widowed artist focus on HIT (Health Information Technology)?

I have been asked a version of that question in virtually every forum where I speak. I can speak comfortably on the subject of end of life care, hospital hygiene, appreciation of the artistic view within medicine or the toys that teach us how to be patients. But no matter the subject, I will always stress the interpretation of health information technology as the most vital element to support patient engagement.

The core of my advocacy mission is to provide patients and caregivers access to read and contribute to their electronic health record in a real time fashion and thereby be a integral part of the health care team. I decided to focus my advocacy in this direction because I thought it was most likely the greatest opportunity to change the current paradigm of patient care.

With the passage of HITECH and implementation of Meaningful Use, a great sea of change flooded into medical practices throughout our country. This created a window of possibility to change our perception of the role of patient and caregivers within the arc of care.

We live most of our lives within a pattern of behavior formed long ago and are defined by our habits. Even our cognitive functions devolve into well worn pathways within the mind. But a few times within a life we find ourselves truly tossed about by waves of change. Perhaps the moment of change centers on a move to a new city, the birth of a child or the death of a loved one, regardless of the cause, the life changes are so extreme that we may break the bonds of habit. Why not have patient portals in the EMR? Why not involve patients in EMR workflow design?

It has not yet become a habit to leave us out.

We are in the eye of the storm and we can yet change the outcome. Health Information Technology is a pry bar or wedge that patients can use to open up healthcare silos and join the conversation.

Those are my thought as I prepare to speak today at HIMSS12.

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.