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Monday, May 24, 2010

Art and Contracting and being an E-patient

Art and Contracting
Originally uploaded by Regina Holliday
When I was child I lived on a sleepy block on Elm Street in Sapulpa, Oklahoma. My father was a junk man who ran a flea-market stall to earn some cash and my mother worked as a hospital housekeeper. I remember endless days of sorting through piles of junk in the back yard. The sun beat down upon us as my sister, brother and I would sort nails into jars. We go through piles of shoes trying to match pairs. Would sift organic compost and fill bags of this ‘black-gold’ for selling in his flea-market stall. My father was a hard man to live with, but even he could see we would work more productively in the shade, so he began to build a shed.

The shed was a simple affair. It had four posts at the corners and one back wall. It was made from scrap lumber with a corrugated sheet metal roof and a workbench placed against the back wall. It was far cooler to work inside the shed, but the shed was not very pretty.

We lived next to a Church. Parishioners were always asking us to get rid of the junk in our yard and every couple of years a committee would come over asking to buy our house so they could raze the property and expand. Every time they were told no. We planted creeping vines, morning glories and honey-suckle all along our five-foot high fence. But they could still see our junk sometimes, and they could see our shed. Someone from the town came one day and told us there had been a complaint. Had we built a shed without a permit? Dad said he didn’t know he needed a permit to build a shed. Well, ignorance of the law was no excuse. We had to tear down the shed. My Dad was angry. And like the Incredible Hulk character I saw on TV, You would not like to see him angry.

Dad decided to make a statement. He took the wood and scraps from the shed and combining it with even more junk built a modern art installation. It was a cart to Calvary made of trash wood and metal and topped with a large cross and he parked in our front lawn in plain view of the Church. It made the front cover of the Sapulpa Herald. The neighbors couldn’t do a thing about it, as there was no zoning code that forbade junk-art installations. My father had made his point, and my siblings and I went back to sort junk in the simmering sunlight of our backyard.

Many years later, I had the opportunity to help open an art store as a satellite location of The Jayhawk Bookstore in Lawrence, Kansas. I remembered the lessons learned in childhood. I would get the necessary permits. And because we had a tiny budget, I would act as the building contractor. I was the mother of a one year old at the time and was the store manager of the Jayhawk Bookstore, but working with my art dept. assistant Sean Barnes we handled the general contracting for the location. We were on location daily and sometimes nightly. We oversaw and worked with the plumbing sub-contractors and the electrical subcontractors. We finished on time and under budget. Afterwards, the electrical contractor said he had never seen his team work as fast as it had under our watchful eyes. We had learned very quickly that Sean or I needed to be on site to communicate goals and facilitate a speedy construction time-line. We did not know that much about fire-code regulations and ADA accessibility guidelines when we began, but we found out you can learn about anything fairly quickly if you are determined and a have a deadline.

I also had to work within the signage ordinances for business in Lawrence, Kansas. Even Wal-Mart wasn’t allowed its customary large pylon sign in this town. How was I to make an interesting anchor location that sold art supplies with limited signage ability? Well, I could do a really large faux stain glass window painting coving a swath of windows three by fifty feet. This wasn’t additional signage: this was art. The non-traditional use of high windows and paint was covered in the July 2000 issue of CNA (Craft and Needlework Age: a periodical of the craft/art industry).

Yes, I had learned my lessons well.

This morning I woke up to find the Washington Post at my door and on the front page of the Metro section was a picture of mayoral candidate Vincent Gray standing behind a fence. You can read the full article at
The article explained that Mr. Gray has a fence on his property that was built without the proper building permit. Mr. Gray had assumed that his contractor Pete Schultz of Eastern Grounds Maintenance had obtained the required permits. This article had me thinking back to art installations, building permits and what it means to be an e-patient.

Sometimes, when you want a job done right, … you have to actually talk with the people on the team. And sometimes to get the attention you need you have to think outside the box.

It is easy to give up the reigns of our own health care and sub-contract responsibility to our doctors and nurses, but when the day is done it’s our body and our record. We have the ultimate oversight authority in our lives and it is really important that we do not give that up. There is a reason for informed consent. You should know what is being done to your body and decide if this is the right path for you. On the flip side Doctors and nurses need to consult with the patient before building any “fences.” I cannot imagine going to a permitting office and accepting a “verbal” copy of the permit. I want the hard copy, I want to read it and I want to post it.

I know building permits exist for a reason. Can they be used in petty ways to push personal agendas? Yes, but their ultimate goal is to protect our citizens. I love that Atul Gawande, in his book The CheckList Manifesto, compares medicine to the construction industry. He writes, “We add somewhere around seventy thousand new commercial buildings and one million new homes each year. But “building failure”- defined as a partial or full collapse of a functioning structure- is exceedingly rare.” Dr. Gawande continues in the Chapter: The End of The Master Builder to relate that when an error does occur it is the result of a failure to communicate.

I bet Mr. Gray is wishing he had checked on those permits. He has gone through a five-month headache about that fence and after paying for its construction he might have to remove it. What we have here is a failure to communicate. In this case, it could cost a mayoral candidate money and prestige. In the world of healthcare a failure to communicate can cost you your life.

Monday, May 17, 2010

"Apples to Apples" by Regina Holliday

This is a painting of data. This is Apples to Apples. This is my take on what data can look like when presented in a visual form. I took patient satisfaction survey results and clinical care results from George Washington University Hospital and combined them with the allegorical image of a child’s report card.

In this painting the sky is a swirling storm cloud of information. It crosses the field of vision like the data on a computer screen. Scrolling left to right and falling off into a nether-land of statistical confusion. This data reflects clinical care. It shows whether or not the correct medicines were given in a timely fashion. It shows how long people live after a heart attack. It is the background and sets the scene for action.

In the mid-ground are four images. To the left is George Washington University Hospital looming in the stormy sky. To the far right is a tower of children’s alphabet blocks. These blocks spell "H C A H P S". This is the acronym for Hospital Consumer Assessment of Healthcare Providers and Systems. These are the building blocks that help patients make decisions about where they would like to be admitted if hospitalized. Sandwiched between the two structures are two children. The small boy holds out two apples. He would like to show you that you have a choice. You, the patient, can decide where to receive care. Due to HCAHPS, you can now compare hospitals based on patient survey satisfaction results. Next to the boy stands a girl. She is concerned as she shows her report card. The patient satisfaction data is now represented in a report card format. Comfortably average scores are now shocking when depicted by C’s, D’s and F’s.

"Apples to Apples" Close up of George Washington University Hospital by Regina Holliday.

"Apples to Apples" Report Card by Regina Holliday.

In the foreground lies our patient. He is trying to research. Hand upraised in frustration or confusion, he tries to comprehend the data before him. His attention is torn between the offer of choice and the presentation of data.

HCAHPS % by Regina Holliday.

The image itself depicts the importance data access, but as an artist I wanted more. This painting was created en plein air at the site of the hospital it is depicting. I stood within the constant stream of passersby, as if I too, were now a data mote. Upon occasion people would stop and ask a question. I would infer-face with them for a moment before they would walk away. I existed only to bring them the data in a way any patient could understand.

That experience was captured on video by Tessa Moran and Ben Crosbie with music by Paul Hanna and can be viewed below or here.

HCAHPS Visualization from Eidolon Films on Vimeo.

Monday, May 10, 2010

A Birthday and Hornet Day

I have been blessed with a birthday that sometimes falls on Mother's Day. Fred and I joked that he didn't have to buy me many presents as our anniversary was the day after Christmas and my birthday was often on Mother's day.

Last year my birthday was on Mother's Day and Sundays were the days we took the boys to see Fred. We could celebrate both right in Fred's room at the Rehab center. I cut him a piece of cake and we all got in my Mother-in-law's car for the drive to Shady Grove.

When we got there, Fred's eyes were focused on the ceiling. There was a hornet in the room. We had already been dealing with ants coming in through the window and now it was wasps. I went down to the nurses station to complain. They said they would send a janitor. We waited 45 minutes and no one came. The cleaning staff had left for the day. I tried to get it myself a few times, but I was so short I could not reach it.

I went back to the nurses station and asked for help. The nursing supervisor came. She stood on a chair and tried a few sweeps with a newspaper. She only succeeded in making it mad. She then got off the chair and told me she couldn't get it and needed to go back to the nurses station. She left and my family looked at me. My husband looked at me in resigned defeat. My two little boys looked at me with the fear little ones reserve for flying stinging things. My mother-in-law just stared.

I picked up a Newsweek Magazine with the Starship Enterprise on the cover and began to climb. I climbed on chairs and bedside tables swatting at that wasp. I chased it around the room. How dare it invade our fragile peace. How dare it worry my husband who was lying in a bed he could not arise from. How dare it scare my children who would only see their father for a few hours tonight. I climbed and swatted. Finally, climbing across the guest bed, I hit it. It fluttered its last and fell to the floor.

My oldest son Freddie let out a whoop. Three year old Isaac laughed a joyful giggle. I spun around with them in the center of the room as we did a happy dance. Fred looked on with a smile. We had killed the wasp. We could do this one thing to make this horrible time a little better. After our giggles subsided, we stayed a few hours and talked. Fred never ate his piece of cake. It was nine days before he went to hospice and he did not feel much like eating.

Months later, I showed friends the design sketch for "73 cents." They asked about the hornet. They liked the picture, but the hornet did not make any sense. They recommended I leave it out of the final painting.

I told my son Freddie about their recommendation that I remove the hornet. He was immediately upset. "NO, Mommy, NO! You could leave out everything else, but never the hornet." He looked at me with those striking blue eyes brimming with tears and said, "That was the special day. The day you killed the hornet. The day you showed me everything would be alright. Isn't that what the picture is all about? When you see something is wrong, you do something to change it."

Today, I went over to the painting and I stared at the space above he door. There is a Hornet in the picture. Freddie was right. You could leave out anything else. The hornet meant everything.

Tuesday, May 4, 2010

Data Cloud

Data Cloud
Originally uploaded by Regina Holliday
This is the jacket design for Roni Zeiger from Google health. This is my interpretation of Transparency in Health Data Access.

A little Blue

Last week I was teaching pre-school students about seascape paintings. They had already done landscape work so they knew the basic terminology. I reminded them of the summer landscapes we did. I said, “In a summer landscape the sky is blue, and it is the top part of your picture and the bottom part of your picture is grass, and it is green. The grass and sky meet and form the horizon line at some point in the painting.” The kids chorused along with the words blue and green as I spoke. “Today we will do a seascape. The sky will be …” “Blue,” chorused the children’s sweet voices. I smiled upon them and continued, “and the sea will be …” They paused for a moment and shouted, “BLUE!” Then they burst into giggles, because even they knew you would not see the horizon line if everything were blue. We all laughed for a moment and then I began to explain there are many types of blue… 

 There are indeed many types of Blue. This is the month of May. This is the month I was born. It is the month of Mother’s Day. It is the month for rummage sales. This is the month I met all of my health 2.0 friends who have been such a buoy in my life without Fred. It is the month I placed the first painting in the Medical Advocacy Series. It is the month Fred agreed to go to Hospice. This month means many things to me, and a few them have me feeling Blue. I always looked forward to May. As a child, my neighbor Mrs. Johnson would cut a large bouquet of peonies as gift for my birthday. I so looked forward to those flowers. I looked forward to the cards that would come from my aunts and uncles. I anticipated the joy of celebrating my birthday. I remember the day itself was never quite as wonderful as the anticipation of the day. I loved looking forward to things. I still do. I am constantly involved in projects that I spend weeks or months visualizing and anticipating. Oh, I love them when they are complete, but the true joy is in the anticipation in the process. This is the breathless excitement of a child at Christmas, the anticipation of joy. 

 So with great confidence, I can say there is no worse grief than anticipatory grief. This is the grief that drags you down and runs like a 24-hour movie in your mind. This is the grief that makes the last days with your loved one not bittersweet, but anguished. It almost feels like you have turned into a computer with two programs running and those two programs are diametrically opposed to one another. Why did I beg my late husband Fred’s doctors for his records? For the first time in my life, I desperately wanted to be wrong. From what little info I had gathered combined with my internet research, I knew Fred had only a few months to live. I vividly remember Fred’s hospitalist telling me I was not behaving typically as I beseeched him for a prognosis. I should be crying and in denial, as he assured me his wife would be if our situations were reversed. 

 I read about the stages of grief: denial, anger, bargaining, depression and acceptance. I went through these stages at a soul crunching speed during Fred’s illness. I loved him so and cared for him daily and accepted in my heart of hearts he was dying. I felt schizophrenic in my love. How could I accept this? I remember posting the “Get Well, Soon” cards on Fred’s wall with such a sense of sorrow. I remember feeling like I was living a lie every time I accepted someone’s well wishes. I was splitting into two and I wore a mask to hide my sorrow. 

 Of all the types of blue I do think anticipatory grief is the hardest to cope with. 

 This is grief that is very lonely. You are the crest of the wave and everyone else is so far below and it so very scary to know soon you will crash upon the shore. Fortunately, most of life is not lived in a seascape. We are not often surrounded by Blue. I am now a year later in my grief. I live amongst a little bit of Blue. It is often lonely and I miss Fred. I miss our conversations most of all. After art class, I was cleaning up the room. I looked down at all the children’s brushes. The brushes and table were covered with dashes of blue. It was beautiful in its way. I had to take a picture. Next week, we will move on to forest scenes and warm earth tones will abound. The blue tones will slowly be covered up in time, but here and there I will still see them. They will be there to remind me of living life surrounded by Blue.