The Power of Naming Names

What is Bellin Health? That question was asked of me last night as I ate dinner with my friends and fellow members of The Society for Participatory Medicine. I was sitting at a table of people very dedicated to the concept of patient centered care and the e-patient movement. Ted Eytan, MD from Kaiser Permanente, Susannah Fox from Pew Research Center, Danny Sands, MD with Cisco Systems, and Christine Kraft from Perfect Sense Digital all looked at me as I explained my visit to Green Bay, Wisconsin to meet with a hospital system so dedicated to patient-centered care that it named their roll-out of a new EPIC EMR system after a patient.

I tried to paint a picture of words describing what I saw at Bellin Health during their Strategy Day Away on March 11, 2011. I knew my language was not enough to describe the experience. So I am very glad I also painted a picture while at Bellin.

If you Google Bellin Health you will find it described as an “Integrated healthcare delivery system consisting of primary care clinics, hospital services, and mental health care. Located in Green Bay, Wisconsin.” If you click upon that link you will see this picture:

It is a nice screen shot, but it does not capture Bellin Health.

And if you research further, you may find out their CEO is George Kerwin, and he has been their president since 1992, and he joined the organization back in 1971. But you will not know that this gentle and gracious executive meets guests in his office around an unassuming round table, not a large cherry desk. Nor will you find that George Kerwin was one of the forces behind the Bellin Run, a timed race that has become one of the top 10 largest 10k races in the nation. Nor indeed, will you find that when George began at Bellin, he was in charge of housekeeping.

If you search even further, you may even find the name Betty mentioned. And here is where things get very interesting. You see, Bellin Health has these Strategy Day events a few times a year, and unlike some organizations that view such days as a break from the daily grind, Bellin uses them to determine how well they have served their patients. This process led them to someone very special.

Bellin Health wants you to know about a patient named Betty Bundy, a wife, mother, grandmother and great grandmother. On Christmas of 2005, Betty Bundy fell. A few months later, she realized that she had lost her sense of balance and went to her doctor. A MRI was ordered, and the results determined Betty had had a stroke. In 2009, she had an extreme feeling of vertigo. The decision was made that she needed to go to the ER. The hospital treated her the same as they had three years before. They gave her multiple tests and could not find anything wrong, and they sent her home on a Saturday. Within an hour she was back, having almost collapsed trying to go home. Upon her return to the ER she was back to square one with a new doctor and staff. There was no coordination of care between the two visits. The entire protocol began again. She was sent home again on Sunday. On Monday she called her primary care doctor and was told to come in, and by this time she could not walk. She managed to make it to the doctor’s office. He took one look at her and said she needed to be in the hospital. She was transported by ambulance and had a heart attack on the way.

As Betty puts it, “I was inadequately treated. One should not have to fight and go through that type of crap to get into a hospital. When I came back and was having the same symptoms, only intensified, somewhere along the line someone should have looked and said, ‘uh-oh, we better go a little bit farther than we’ve gone. We better not go in the same route.’ My whole history was available if they had bothered to look or to ask. I think a central repository of patient history is vital. Those personnel that I do see on a systematic basis need to know that I have these other people working with and on me. It’s got to be a teamwork affair. So when you centralize that, when that information is available, it doesn’t really take all that much time to determine who this person is medically.”

What makes Betty’s story even more interesting is how Bellin Health discovered her. You see, Bellin Health has an award-winning stroke program. By the all the traditional measures of care, Bellin Health was providing excellent service, but they wanted to know how their patients felt six months or a year later. When the staff decided to follow up with several patients after a Strategy Day Away, they found Betty. And she gave them an earful. Now, many hospitals would have turned a deaf ear or blind eye to her complaints. Not Bellin Health. They asked her to join their patient advisory group for the stroke program.

She had so much to say and add to the conversation that they were inspired to ask her if she would be the face of a new electronic medical system at their facilities. They met it literally. They used her stylized visage on a logo for the installation of the new record system and called it Betty. At other hospitals I often hear disparaging references to new system implementation. It is the new “big monster.” It is the reason for frustration and work flow disruption. It is hard to hate an EMR named Betty. As the staff says this name, they are being reminded. This is being done to create better patient centered care. This is Betty’s story; this is the patient’s story.

They did not stop there. As they have been working through the installation, they have been including patients in their meetings about the entire process. I had the pleasure of viewing such a meeting as Team Leader, Anne Hale, took me on a tour on March 10.

The organization had procured an old retail store in a local shopping mall. In the empty sales space a large crowd had gathered and was working through workflow set after workflow set. The room was filled with all the different staff of the hospital from data techs to nurses to patients.

The space was filled with dedication, energy and freshly baked cookies. These folks had learned something that Ted Eytan and I tried to impart at a recent health care round table in DC. In order to think outside the box, sometimes you must remove the box. Whether you sit in a circle in the Hall of States building in DC or in a huddle in low-tech empty store in Green Bay, the informal friendliness is real life. When we talk health, we are talking about applying it to real life situations.

I also met with the amazing Kari Barrett, RN, who is involved in Patient and Family Participation and Femi Cole in Communications. We had a great conversation about the power of nametags. I mentioned my painting The Onion and the Orchid.

I told them how giving me a name tag that just said “visitor to room 6218” was dehumanizing and took my personhood away. Just as giving my husband Fred Holliday the moniker “the patient in room 6218” was also dehumanizing.

I mentioned that I include speaker’s nametags into my paintings as they let me reclaim my name -Regina Holliday. I also shared information about the wonderful nametags they print at LeBonheur Children’s Hospital in Memphis, Tennessee. They print your name and face on those tags, thereby showing a concern for security and respect. I am very proud of my LeBonheur nametag.

As our conversation continued, Kari shared that even the members of their patient advisors have nametags that are as professional as the staff tags. At that point, I shared one of my greatest concerns with institutional hospital nametags for staff. I call it “nametag flip.” It is the accidental or purposeful flip of the tag so that the patient cannot view the name of the provider. It drives me crazy. There is an easy fix for this. Even the folks at conferences like Health 2.0 know to make the tag double sided so the name always faces out. Femi mentioned it might be one-sided because of a magnetic strip or perhaps it was cost prohibitive.

Then Kari mentioned it could be done as it already was done. Every patient advisor’s tag was double sided, so no matter where they went or if their tag flipped you always knew who they were and that they were patients or family.

I had so many wonderful conversations and saw so many great things at Bellin, but I was there to paint and speak. So on the morning of March 11, I began to paint the words that I had heard spoken at Bellin Health, and those words became the painting Quilting Bee.

And as we already at 1,500 words… the explanation of that piece shall be a post for another day.

The Last Puppet Show

Fiction and drama can teach us how to live, how to die and how to say good-bye. If you only 2 minutes to say goodbye to your little sons, what would you say? What would you do? When Fred needed to say good-bye to his sons he said it with puppets.

Do you ever think about who teaches you how to die? Who teaches you how to advocate for those you love? If you are young and live within a peaceful land, you may have rarely experienced death.

If reality has not taught us, then we can rely on fiction to do the job. Fred always loved to quote a line from Grand Canyon. “That’s part of your problem, you haven’t seen enough movies. All of life’s riddles are answered in the movies.” –Davis (Steve Martin) I couldn’t agree more.

I knew I was inspired to advocate for Fred in a hospital by watching performances by Shirley Maclaine and Sally Field. Who can forget Terms of Endearment or Steel Magnolias? Shirley’s character advises every e-patients as she cries out, ”It’s past ten. My daughter is in pain. I don’t understand why she has to have this pain. All she has to do is hold out until ten, and IT’S PAST TEN! My daughter is in pain, can’t you understand that! GIVE MY DAUGHTER THE SHOT.”

Did you know Fred Holliday, PhD. was a puppeteer?

When he was in school many years ago he was under the direction of the Puppet Master Gerald Snelson. Fred was part of traveling puppet show that would visit the local schools. Professor Snelson gave us what was one of our most treasured wedding gifts. He gave us the entire puppet set from his production of Brave Little Tailor. These are not small hand puppets. Think Jim Henson style puppets. They are amazing.

Those Puppets helped us through the years. When we were still newlyweds we persuaded a few friends to entertain the crowds at Grantsville Days festivities using these puppets in a show of our creation.

When our son Freddie was only 4 years old he was invited to a birthday of his good friend Jack Taylor. Two days before the party I received a distress call from Jack’s mother Theresa Taylor. Her party entertainer had cancelled. Could I help? I had to work at the toy store. I couldn’t help, but Fred could. Fred resurrected the puppets once again and off he went to present a one man puppet show before a room of active little boys. He was a hit.

For many years the puppets stayed in our closet as we worked many hours at many jobs. Then in spring of 2008, our family was at a crossroad. Fred was very tired and stressed. He felt he could no longer work long hours as an adjunct professor and video clerk. I was also very tired of working long hours away from him and the boys. So we came up with a plan. Two things could happen. In the fall of 2008, Fred could get a fulltime position at a University or we would take the puppets out and become a Birthday Party entertainment team. I would do the art projects with children and Fred would do puppet shows. In honor of this plan, I gave Fred a Frog puppet for his 38^th Birthday.

Fred was very proud of his new puppet. It sat upon the desk as a promise that life would get better. That summer the crossroad was reached and a future chosen. Fred was hired at American University. The Frog puppet was put away, as we went down a different path.

In the spring of 2009, Fred became very ill. While hospitalized he discussed with me how he would like to say good-bye to our boys. He would do it with puppets.

The Frog puppet would get only one performance. Fred had intended to do several puppet stories, but he was so sick in hospice and time ran out. So there is only one good-bye. Fred was an amazing puppeteer; he could make you believe his hand was a puppet. But I am glad he had this chance to use the Frog… to walk the other path for a few minutes. I am glad I can share with you and my boys his last performance.

Participatory Art

Hello, we are going to talk about your goals today. My name is Regina Holliday and I have years of experience working on procedures such as this one. I may be a professional in this field, but I deeply value your insight and vision as a positive outcome depends on your ownership of the task. I came to speak to you about your ideas. What do you want during this process? Is there a certain concept that excites you? What do you bring to the table?

Does that sound like the words of Participatory Medicine? Well, in this case it is participatory art. For the past two years I have been going into classrooms in Washington DC and talking to the students about what would they want to do for their class auction project.

This was a rather disruptive concept.

I got the idea to do this from two different sources. I was inspired by the give and take relationship in the Responsive Classroom movement and the Participatory Medicine philosophy of the e-Patient.

When I first began asking children what they would like to create, I was told by many teachers and parents that children needed to be told what to do. I was told that they were not educated enough or that they were too wild and flighty and their ideas would have no merit. It would be better if the teacher and parents just spoke amongst themselves and then just made the children paint.

For many years I went along with this model. I would go in a class and we would do the picture we were told to create. Then I saw the joy of students in a responsive classroom model, and I felt the auction art method must change.

So now I go into a class and we discuss the pros and cons of each project. We talk ROI (Return on Investment) and we speak of history and art while the children decide what they would like to create. It is an amazing process and because the children own the concept they are excited, engaged and empowered. I was honored to help create 20 projects using this method at CCBC Preschool and Murch Elementary this winter and I am overjoyed with the results.

4^th grade

In Asha Mathur’s fourth grade class, the students were brimming with ideas. We had an in depth brain storming session. And the children decided they wanted to do a two-sided piece. On the face side the students created a silhouette of the school with trees and students. It is the “Murch of the Now” and is held within a physical structure of the school. In the shadow box side, the students created their version of “Murch of the Future.” I find the “Murch of the Future” amazing, as it has no physical building that is defined as “school.” Opportunities to learn are everywhere. These 4^th graders have grasped a concept that many of the elders do not comprehend. In a cloud-based learning system, the sky is the limit.

While creating this sparkling future vision, one child piped up with a question. “If we are creating a picture of the future should we be painting trash and pollution?” I responded, “It is your choice. You can create a sparking future or one filled with waste. You are the young. You are the future. And the painting you create will help define the future that you live in.”

While saying those words, I went over to the chalkboard. I began to draw a series of upstroke lines culminating in a puffy rounded-shape. I asked the children what I had drawn, they responded, “A tree!” I said no, “That is a mushroom cloud. And when I was a child that was an image that everyone understood and it was a possible future. But you see a tree, and that is beautiful. That is the future you see.”

Mr. Paterson’s 4th grade class was inspired to paint image after image of Stickman on their own fantastical safety signs. You know stickman he shows up as a common pictograph human telling you where and when to walk, which floors are slippery and which restroom is the appropriate choice depending on your gender. I was so excited to see their creative uses of such ubiquitous image. Not long after working with these creative students, I had the opportunity to speak with a QIO (Quality Improvement Organization) and the CEO's at a hospital. I told them about the immense power of the simple patient safety sign. The patients are watching, the children are watching. If we place simple images in the corridors of medical institutions, the visual message will be understood and acted upon. Thank you Mr. Patterson’s class for focusing on this important topic in our society.

Ms. Finberg’s class had already begun their project of decorating two birdhouses, but I helped them the painting aspect. Children painted a photo of their likeness on two birdhouses created by a Boy-scout troop. It was a wonderful example of re-cycling and using objects in new ways.

3^rd Grade

Ms. Hsu class decided to paint about Literature. The Painting “Flying Books” depicted the way your mind can soar when you have the ability to read. The children could focus on a specific character or book within their picture. I was amazed that most students were creating books without titles. They were depicting the power of literature and story to change lives and open minds and knew that topic to be too large to be constrained within one title.

Mrs. Friedman’s class seemed exuberant, yet, fractured in their vision when I came to speak with them. They wanted to speak about places and themes of babies and memes. As I poured over the images they captured, I wondered at what they had created. This was not typical auction art. I realized the concept throughout was Internet memes. They were especially focused on the use of baby images throughout viral advertising. I think this piece is one of the most edgy auction art pieces I have seen. These children are thinking. They are making a statement. In their depicting image after image of babies selling products, how can that not be a statement on auction art itself? Hmmm… Thank you for your message. I take it directly to heart. And thank you Orly Friedman, you are teaching children to ask some very important questions.

Some students in the third grade classrooms also worked on a teacher appreciation project. They spent the majority of their recess creating a lovely flower vase piece that would become the foundation for a teacher appreciation card later this week. The third graders seemed to be having so much fun that some kindergarten students and fifth graders joined in as well.

2^nd Grade

Ms. Maravi’s class wanted to create an elaborate and multilayered approach to a forest scene. The students created their own Robert Frost inspired poems. Then they painted birch trees that incorporated the poetry. They also created crawling bugs and flying insects that completed the scene. I love that these piece when seen from a distance, seems so simple. When you are up close the poetry becomes apparent. Recently, I gave a speech about health and decided to close with a poem I had written. Another speaker, came up to me afterwards and told me had inwardly groaned at my words. Not a poem, he thought. He had succumbed to a belief that an original poem by an amateur is painful to listen to and adds nothing to the presentation. He admitted he was wrong. Thank you students in Ms. Maravi’s class you get the power of poetry.

In Ms. Schafer’s class they were concerned about the environment and decided to depict a rain forest scene. The children created brightly painted animals and insects within a forest of the brightest green. It was such a pleasure to work with Ms. Schafer again. She had been my son Freddie’s second grade teacher. She is an amazing advocate for her students. In April of 2009, I had last worked with her. Fred was so sick, and I finished assembling her class project at Fred’s bedside. It was so good to work with her again and to do so with a happier heart

1st grade

Ms. Werner’s class wanted to work in a variety of mediums and concepts and I came into their process when it was well underway. The wanted silhouettes, quotes, and drawings. We combined all three by creating a rainbow of possibilities. The entire class combined all of these concepts into a free-spirited vision of themselves.

Kindergarten

A Warhol portrait piece was the inspiration for the class project of Ms. Bogan’s class. Using the bright colors of the sixties pop art movement, they painted photographic self-portraits.

Pre-K

Ms. Emily Stewart’s pre-k class is quite active. My son Isaac is one of the student’s in this class, so he was very excited when I appeared to discuss their auction art. We discussed many options that the class could work on. They could paint a DC landscape or perhaps an underwater fish scene. They decided they would like to paint themselves as cowboys. So, each child created a painted faux tintype. These images were then combined to make a wall covered with old wanted posters. It is a great piece and I would not have thought of it in million years. There is an amazing result that occurs when you are willing to listen to children or patients
.

Later this week, I will go back and work on one more project. In the frantic effort to create the auction art and follow many email threads, one class had been left behind. Murch has a dedicated Autism classroom. The three students in that class had not been asked what they would like to create. On Friday, I went in and asked them. They will be painting a piece about food, animals and music. It should be amazing.

That is the power of art. It can give a chance to use your voice and that is Participatory.

The Writing on the Wall

I have not posted recently and that is partly due to a great deal of art I have been doing with the children of Northwest DC. I love to work with children and to see the pure art they produce. It is such and honor. I am also working on a book and that has taken up a lot of my time to write. That book is 73 cents. It compares my childhood of abuse to the Fred's experience of being a patient while I experienced being his caregiver.

As I was flying to Memphis to present a speech before Methodist Healthcare, I wrote a poem that I thought I should share with you.

The Writing on the Wall

When I was only six years old, I drew upon the wall.

So sad, so small and all alone, I smote my cares on stone.

The other children swarmed and skipped

Like ants, they’d come and go.

I stood silent, chalk in hand and wrote upon the wall.

The teachers would pass me by and talk amongst themselves.

The children laughed and ran and played

And left me to myself. So, I would draw, and sculpt and scratch

The art would sooth my soul.

I left the best of me as powder on a wall.

At seven years, I learned that walls are hollow things.

That fathers beat and children greet whips, with tears and screams

That gentle hearts can’t help but bow before the rage.

Those walls give way to fists and boots, while drywall cracks with age.

I wrote my sorrow on page and dropped it in the wall,

Hoping it would speak for me,

If I could speak no more.

Seven years old, I might be and slow and sad and small,

But even I could read the writing on the wall.

At seven years and thirty, I’d find the wall again.

I’d remember in my sorrow that bricks could be your friends.

That cinderblocks and stones can calm

That paint can make amends,

So, I painted all my grief out and smeared it on a wall,

And the children watched in wonder,

And a world would hear my song.

Sometimes within our sorrow, sometimes in grief and rage,

We can write our testament with gigabytes and paint.

When was only six years old, I drew upon the wall,

So sad, so small and all alone, I smote my cares on stone.

But I no longer paint alone.

For others hear the call.

Thank God each night my friends log on

And read the writing on my wall.

For more background related to this post, see "Rescue Me".