In Case of Emergency

I bet you will never guess my favorite literary genre.  Here is a hint: Siobhan Champ-Blackwell’s Walking Gallery jacket- “In Case of Emergency.”

Yep, that’s right, I love post-apocalyptic fiction. 

I have read all the classics: Earth Abides, On the Beach, Alas Babylon, Lucifer’s Hammer, The Postman, The Last Ship, A Gift Upon the Shore, Malevil and of course Stephen King’s The Stand and The Dark Tower Series.   I especially enjoy children’s post-apocalyptic literature.  I have read all I could find of that wonderful sub-genre.  My childhood was blessed with titles such as Z for Zachariah; Children of the Dust and the terrifying picture book by Raymond Briggs entitled When the Wind Blows.   Currently, we are living through a renaissance of sorts in children’s literature that describes the world after catastrophe.  Books such as The Hunger Games by Suzanne Collins and The City of Ember by Jean DuPrau have attained best-seller status.

I am glad that such books are available.  They taught me a very important life lesson: no matter how bad it gets, some people survive and they must never give up.  As a patient advocate and the caregiver of the dying this has been a mantra I live by.

When I heard Siobhan wanted to join the Walking Gallery I decided to paint disaster upon her back.  Siobhan recently moved to DC after joining Aquilent in September 2011.  She had been working in Nebraska and has over 13 years of experience in library and information science.  Her job at Aquilent focuses on disaster health information goals of the Disaster Information Management Research Center at the National Library of Medicine and for the Bethesda Hospital’s Emergency Preparedness Partnership. 

So upon Siobhan’s back I painted an androgynous figure bathed in flames, to the figure’s left tornadoes spiral in the distance.   To the right a mushroom cloud forms.  The torso of this figure is a turtle’s shell.  It reminds me of “See the Turtle of enormous girth, on his shell he holds the earth,” from Stephen King’s The Dark Tower.  This figure holds our hope of survival in his hands.

It is a book.  The book functions as a life raft.  The book is open and the title can be easily read: “In case of emergency.”  But I worry so for the patient who stands upon the page.  She is trying to row with a blind-fold on whilst all the life preservers float away within the rushing flood.  To her left a baby is trying to crawl off the raft unseen by our blinded patient.

I cannot help but think this book was opened far too late and I worry so for the figures on the raft. 

Siobhan is one of those amazing people who help create plans to overcome disaster and helps disseminate that information to us all. 

She did exactly that when she spoke before my Cub Scout troop in November.  She stood before first through fifth grade boys and spoke of fire, tornadoes and floods.  She spoke before children wearing this jacket and inspired them all.  She knows something I knew as a child, children are resilient, natural survivors if we only let them open the book and learn what to do in case of emergency.

The Turtle's Path

Last winter I presented a speech before Centers for Medicare & Medicaid Services (CMS): Quality Net Conference in Baltimore, Maryland, on Thursday, December 2, 2010.  That day I met two very important people: one was Dr. Charles Denham and the other was Carolyn Scott, V.P. of Performance Improvement & Quality, Premier, Inc.  She gave a great presentation. 
And my speech followed her performance.  Not long after the event she told the staff of Premier about my speech and suggested they contact me about delivering a keynote. Karen Holtz, Director of Collaborative Execution soon called me up.  I told her I would be honored to speak.  But in addition, I would love to paint onsite. 

On Monday at 2:00pm, Carolyn Scott gave a marvelous speech.  She began with a slide that that combined a Nascar Race with the Logo of Quest.  During the entire conference the motif of a race would be repeated throughout. As she spoke, I immediately I began visualizing her words.  I call her painting “The Turtle’s Path.”

In this painting, a blue sky is filled with a crimson sun.  It is the magic hour.  It is sunset or sunrise, but any picture taken now will be amazing.  The Sun within the painting swirls with the emotional intensity of the crowd listening to Carolyn’s speech.  Below this sun, three data lines rise forming the horizon.  This is the chart depicting Case mixed adjusted cost per discharge.  

The first line is the national trend from Carolyn’s Slide Set.  This line is green with a series of triangles.  On these triangles I painted little eyes and they represent the dollar.  



The next line is the compare hospitals that have not adopted Quest.  Blue diamonds represents this line. There are five diamonds on the line that have descended from the playing card: the Nine of Diamonds.  This card is often called the Curse of Scotland as legend has it as it represented the coat of arms of Sir John Dalrymple, First Earl of Stair who authorized the Glencoe Massacre in 1692.  Finally, there is the red line representing Quest hospitals.  This line is a series of squares with hearts upon them.   These hearts represent the great care Quest hospitals wish to provide for their patients.

Amidst these data lines, a mountain rises.  This is the logo for Quest.  A river pours down the mountain into the foreground of the painting.  In the center of this river is a Turtle.  Carolyn used an info-graphic in her slide set that looked just like a turtle so I painted it as one. 

This turtle swims upstream against the current.  This turtle represents all of those hospitals that are trying to make things better for patients.  



Beside the flowing banks of the river are rabbits wearing stethoscopes and they are asleep.   They are the providers who come out of the gate running, leave the conference inspired, but six months later have nothing to show for it.  The Quest providers are the turtles and at this point there are over 250 turtles.  As one Quest member from Hawaii explained, the Turtle is mighty and wise.  Or as Stephen King writes in the Gunslinger Books, “See the Turtle of Amazing Girth, on his shell he holds the Earth.”

And speaking of Stephen King, I spoke after Carolyn.  I spoke of Fred and our love, Buffy, toys, art, Stephen King and Autism.  I spoke of electronic medical records access, end of life care, the speak-up campaign, hand washing and The Walking Gallery.  I ended with my poem “The Wheals on The Bus.”  The audience cried and laughed.  And just like the last time I spoke with Carolyn, the audience rose to their feet.

The next speaker was Blair Childs, Senior Vice President, Public Affairs, and Premier Healthcare Alliance.  His speech was entitled “Pay-For-Performance: Are you prepared?”  He had a lot of interesting things to say.  Later in the evening I debated with him about patient participation and it’s meaning in within public policy.

On Tuesday June 14^th, I was so excited to hear Julie Kennedy, RN, Coach, Studer Group speak about HCAHPS in her Plenary Keynote.   I would get to paint about HCAHPS once again.  This is a painting about her speech and it is entitled: “Generational Health Care.” 

Julie began her speech talking about her medical pedigree and credentials.  I began to be frustrated as insistence on credentials and academic language can often create barriers for patients.  But Julie began talking about an entirely different type of credentialing.  She is part of five generations of medical professionals.  So in this painting is her Great-Grandmother a midwife, her Grandmother an herbalist, her mother a nurse, Julie a nurse and her daughter who is in training to become a nurse.  Each body is depicted as rising rectangles: they are a bar chart.  One of the key elements within Julie’s speech was the realization that every bar chart and graph represents real lives and real deaths.  As she stated, “Remember… the Numbers have Faces.” 

In Julie’s daughter’s hand is a smart-phone with a HCAHPS app displayed.  She is helping create a culture of always.  This is the heart of rounding.  HCAHPS coupled with core measures will create better patient outcomes.  Hence the smart-phone is framed with a heart and surrounded by a halo of apple cores.

In the lower left side of the painting, lips exhale the word “excuses.”  Julie continued her speech by saying a culture of always was possible and the common excuses were not acceptable.  To often she hears “We don’t have time for that” or “We are short staffed.” I depicted this in the painting with an image of a stopwatch and a very tiny nurse.

To the upper right of the painting is an eye.  This is the patient’s eye, the caregiver’s eye, and the nurse’s eye.  This is the oversight that makes rounding and HCAHPS work.  And finally, the number 83 is painted upon the canvas representing the amount of lives saved at another facility’s due to their decision to embrace harm avoidance protocols.

Next, I attended a break out session on UTI’s.  I very much wanted to attend this session as Fred suffered greatly from lack of proper urinary track care.  This session was called “HARM: Using Lean Strategies to Reduce CA-UTIs” it was presented jointly by Laura Bell, Assistant Vice President and Genia Odom, Director Process Management East Alabama Medical Center.  This session inspired the painting  “Avoiding CA-UTI.” 

Again the bar chart motif repeats within this painting, but this time it almost appears to be a fence separating the provider from the patient. In the center of the painting a woman stands.  Her bladder and kidneys are clearly depicted.  During the speech an info graphic resembling a Venn diagram was used.  On that diagram were the words:  strategy, epic capability and culture change.  I turned the Venn diagram into a triskelion symbol as I thought it more in line with the kind of culture change that Laura and Genia were promoting.  

During their speech they showed a wonderful poster depicting the proper placement of a catheter bag on a hospital bed.  During the Q&A, I asked them “Do you place that in every patient room that a patient is currently using a catheter, so that the patient and caregiver can insure proper use?”  The answer was no.  They had not thought of doing that, but because a patient was part of a Q&A they are thinking about it now.

A speed networking session began at 11:00am and continued until 12:30pm.  It was brilliant!  It was like speed dating, but between facilities and providers and from that session, I created my favorite piece from the conference:  “The Three Iris Eye.” 

There are three different irises because each person met a great number of new contacts during this session.  The pupil in the center is a camera lens.  Hopefully, some of the participants will utilize their photographic memory and remember the brilliant ideas of their peers. 



Each session was over in a matter of minutes and the sound of a revving engine would encourage each pair to separate and find another match.  So in this painting there are two Nascars one is painted with the logo for Christus St. Vincent Regional Medical Center and the other is Saint Louise Regional Hospital.  As I painted these two different yet similar logos, I thought about the race we had talked about for the past two days.

As I painted I thought of my favorite Bible verse that for the past three years has graced my Facebook page, “Do you not know that those who run in a race all run, but only one receives the prize? Run in such a way that you may win.” 1 Corinthians 9:11

The wonderful folks at Quest may be turtles, but slow and steady shall win the race.  And trust me I have watched them speak and have painted their souls.  They run is such a way that they shall win.

Speaking at Microsoft

Just a Girl:
The Power of the Story in Patient Art Advocacy by Regina Holliday

Presented at Microsoft Connected Health Conference on Wednesday April 27, 2011 as part of the panel "The Power of Consumers, Researchers and Patient Advocates in Healthcare".

 Where does a story begin, and where does it end?  This is Frederick Holliday II, my husband, a college professor, and all around great guy.  I am Regina Holliday, just a girl and store clerk and art teacher.  We were regular people who met in a painting class at OSU and fell in love.

 What is your favorite story?  Mine is Mother Hulda.  But my husband loved Buffy the Vampire Slayer, and he loved it so much he wrote his dissertation on it.  And he loved the Dark Tower by Stephen King so much that he died in its shadow. 

This is our story.  We wed in 1993 and had two wonderful sons. On Christmas 2007, we took our only formal family portrait. It was a hard Christmas.  Fred was working three jobs, and so was I.  And Freddie, our eldest son, had just been diagnosed with autism.

Our New Year’s resolutions for 2008 were:

• Medical insurance for the whole family.
• Get little Freddie into a special needs school. 
• Fred gets a job in his field. 
• Spend more time together as a family. 
• Get a two-bedroom apartment 

 And our prayers were answered.  That summer we got everything but the apartment.

In the fall of 2008, Fred was very tired.  He went to his doctor and was diagnosed with hypertension.  In January, February, and March of 2009 Fred was in constant pain.  He visited two emergency rooms and was sent home.  He visited his doctor’s office many times and was given pain pills but no diagnosis. 

Fred was hospitalized on March 25  for tests. Then at 11:00 am on March 27, Fred called me while I was at work selling toys.  He said “Reggie, the doctor was in, and he told me I have tumors and growths in my abdomen and a 3cm tumor in my kidney. Please come as soon as you can--I am so scared.”  I got to the hospital within 30 minutes, but the oncologist had already left town for a medical conference and would be gone for the next four days.

I asked everyone involved in Fred’s care for information.  “What was the diagnosis? What were the treatment options?” Then I would research Fred’s condition online.   

After weeks of hospitalization and little data access, I went down to medical records to ask for a copy of Fred‘s entire electronic medical record.  I was told it would cost 73 cents per page with a 21-day wait.

Some folks upon hearing our tale have said I must have not tried very hard to get the record.  But at the same time I was trying to get a copy of the EMR, I was also trying to get a galley of an unpublished Stephen King book. As I researched Fred’s condition, I grew concerned that he might not make it to the fall.  So I emailed the store book buyer and she emailed the rep, who emailed the publisher, who got approval from Stephen King.  Fred had a copy of Under the Dome within 4 days of request and seven months before it was published. 

On Saturday April 18, 2009, Fred’s oncologist said, “We’ve decided we’re sending you home on a PCA pump.”  The doctor left, and we burst into tears.  Fred turned to me and said, “Go after them Regina; try to get me care.”  After five days of attempting a transfer to another facility, Fred was sent with an out of date and incomplete medical record and transfer summary.  The new hospital staff spent the next six hours trying to cobble together a medical record using a phone and fax machine.  I eventually got a copy of the record, and I read it in about three hours.  The document was filled with errors as well as actionable data.  I felt we must do something to change things for other patients.  For even with all its errors, it was instrumental in helping me provide care for Fred in the last 56 days of his life.   So I took Fred’s data and painted it as a 5x6 foot mural on the wall of a local deli for all of our neighbors to see.

Next my new friends in the world of Health 2.0 began blogging about our attempt to change the system.

How does social media affect medicine?  Fred was hospitalized in five facilities in eleven weeks.  He only had WIFI access in two locations.  As I could go home and log on, I was able to use the Internet for research and support.  Neither of us were able to communicate with medical facilities using Internet portals.

I got on Twitter on May 3 to talk with health 2.0 blogger Christine Kraft and kidney cancer survivor e-Patient Dave.  Within one day we were in email contact and spoke on the phone.  By ten o’clock on May 4, I was talking with Dave’s oncologist about my husband’s cancer care. 

I joined Facebook in the fall of 2008 to organize our son’s birthday party.  In the months during Fred’s hospitalization I would use Facebook as an information clearing house.  Hundreds of friends and family would log in to check Fred’s medical status.

We fulfilled our final 2008 New Year’s resolution on June 11, 2009.  We moved into a two-bedroom apartment so I could care for Fred in home hospice.  He died six days later on June 17.

On June 21, I wrote a blog entitled The Battle Begins.  I vowed I would take on a medical system that had treated my husband so poorly and I would do it as an artist.  Six days after Fred died I was on a ladder painting the mural 73 Cents.

I learned about the power of art advocacy.  I made new friends and contacts in social media and spoke to reporters from all over the world.

A quote by Simon Schama describing Guernica is included in the mural and asks, “Shouldn’t art stick to what it does best- the delivery of pleasure?  And forget about being a paint brush warrior, or is it when the bombs are dropping we find out what art is really for?” 73 Cents became part of the national health care reform debate.  And just like the internet, it advocates 24 hours a day, and you cannot tell a wall to shut-up.

On Tuesday October 20, 2009 we dedicated the mural by singing songs from Buffy the Vampire Slayer.  We sang my next question, “Where do We Go From Here?".

In Buffy, there are many foes to conquer.  Is the Big Bad in medicine overall spending on health care?  Or is it lower life expectancy due to lifestyle?  Or is the Big Bad what happens if patients are kept blind, deaf, and dumb?

Last December I attended the IHI patient summit, and I learned about the Triple Aim.  I heard about the IHI fellow’s campaign “What can you do by next Tuesday?”  I thought of Tuesday nights watching Buffy with Fred.  It reminded me that “just a girl” could save the world.

How would the girl in me change things?  The way patients are treated reminds me of child abuse in the 1980’s. No one talked about it.  Then we heard of Adam Walsh and saw faces on milk cartons.  We were given permission to speak out about abuse.  There were hotlines we could call, and those hot lines saved lives.  I know.  I used one myself. 

We must give patients and caregivers permission to tell their story and provide platforms to spread their tale.  We must ask them to speak up.

What can a metro rider do to support change?  Be as diligent in a hospital as in transit. Expect to be told realistic wait times in hospitals.  Promote the use of smart cards, instead of dependence on paper transfers.

How would a toy store clerk promote better care?  Compare POS system adoption to EMR adoption and ask, “What are we waiting for?”. Ask "Why do we have complex toys like the 20 Q ball, but we don’t have CDS for patients?".  Think outside the box on what helps people to heal. 

How would a mother of a special needs child create change?  Demand that the level of inclusion that is part of the IEP process become the norm in medical settings.  Use the right to data access within Meaningful Use, like a parent uses the right to records access in education.  Support tools such as EMR avatars to overcome “face-blindness” by helping people, autistic or not, recognize faces and facial expressions, including pain.

How would a preschool teacher promote positive change?  Discourage using a changing table for food consumption and wound care supplies.  Firmly encourage hand washing in a hospital just as she would in her school. 

How would an artist, story teller or poet promote Patient-centered care?

What does street artist Shepard Fairey have to say?  “The more stickers that are out there the more important it seems.  The more important it seems the more people want to know what it is.  The more they ask each other.  It gains real power from perceived power.”

Or as Christine Kraft would say, “I can tell you something about stories: They drive engagement.  What we don’t typically consider (and this is why stories are so controversial) is that stories are legitimized by an audience, not a storyteller.  That is why some stakeholders resist--they don’t want to legitimize a story, a rad idea or tribute or pain, by giving it a platform. Enter the web, the blog, the phone, the community, the email thread we’re on.  Stories. You know them when you see them.  And sometimes you need to see them to believe them."

So, what would you do to change things?  What would you do as a wife or a mother, a sister or brother, a co-worker, or friend to change things for them?

I would like to close with this poem that ties it all together. 

And remember sometimes a wheal is a welt.

The Wheals on the Bus

By Regina Holliday

3-17-10

The wheels, the wheels: they are a turning,

And past abuses do impress upon this fight.

And thoughts of riots, rights and rulings,

Spin in circles in the shadows of my mind.

I go to sleep at night and think of coding.

Is our savior high within the data cloud?

Is access to our care, as great as knowledge?

Where shall peacefulness be found?

Does freedom lie within a soup of letters?

Do PHR’s and IEP’s and EKG’s and HIT

Open doors to our gaining knowledge?

Is ARRA an acronym, or is it a primal roar?

Arghaa! Arise! An EPI pin, to stimulate

The growth of understanding,

That we are all Patients in the End.

Here, I take my stand. I can do no other;

For past abuses do inform this time,

And, two by two my Luther’s tell me

To demand my data rights ,

To be resolute, that separate is not equal,

And that no man,

Should stand

Between me and the Word.

Is 1135 a page in the Annals of Oncology about Kidney Cancer?

Or is it Volume 113 of Pediatrics no. 5 in 2004: “The Genetics of Autism.?”

Or is 1135… simply, “JESUS WEPT.”

I will see you in Galilee, Galilee, Galilee

I will see you

In the ring, the circle, the circuit,

And the wheals they are returning….

The wheels on the bus go round and round,

Round and round, And Rosa parked.

She refused to give up her seat at the table.

ICD-10, Do you intend, to save me from my coding?

Do you entreat, that we retreat?

And expect the patients, now informed and comprehending,

To sit idly by awaiting your instructions?

Physician Heal thyself,

And let empowered patients speak,

And draw attention to those that seek

A better and healthier tomorrow.

"Just a Girl"

View more presentations from Regina Holliday

The Quilting Bee

There are some brave people in this country who invite me to attend their conferences and meetings. They invite me to speak while not knowing which things I will say. They invite me to paint while unsure of what the final image will be. They know that when a patient or caregiver comes to the table the paradigm will change. And for many people, change is very scary.

Before coming to Bellin Health, I had a conference call to discuss the upcoming event. We talked briefly about what I would paint. I explained that I paint the things that I see and hear and that can result in good images or negative images based on the words and the culture I am depicting. I could feel hesitation on the telephone line. The folks at Bellin wondered what kind of picture they would get. Would it be bright? Would it be happy? I told them, my paintings reflect the words you say channeled through an artist’s eyes. If you want a bright painting you just need to be true and genuine, I only paint the things I see and hear. There was a moment’s pause. They agreed to my onsite painting, believing their culture would show as brightly as the sun. And it did.

This is Quilting Bee. The day I arrived at Bellin Health I was able to tour an allergy and asthma clinic that installed an Epic EMR system 10 business days before. I got to be privy to their last onsite meeting with the Bellin Epic installation team working in concert with the clinic staff. I often get to sit around a table and talk data and tech, but this was the first time I did that with only women present. As Anne Hale and I left the building I remarked how much the dedicated women around that table reminded me of a quilting bee.

You have probably heard the word bee used this way before. It was once very common to unite a community in a common task to help each other. There were barn-raising bees, spinning bees, quilting bees and spelling bees.

The quilters in this painting are patients, informatics professionals and doctors. They are stitching P for patient into the blocks. One patient looks in wonder at her painted nails. This image is referring to a story one of the IHI fellows told us. A young girl was asked what was the best thing that had happened while she was in the hospital. She answered, "The day they came in and painted my nails."

Some blocks are quilted with the with the letters for HIT, BETTY and EMR, because that is what these quilters are building. Other blocks refer back to the slave quilt code used during the civil war. One block is a shoe-fly representing the message that this is the one you should follow. One block is the cross roads representing this is a point of decision upon the path. Another block is the North Star that points the way to freedom. These blocks create a message to patients: this is a safe place.

Other blocks in the quilt represent the companies that Bellin Health works with such as EPIC, The Green Bay Packers and Georgia Pacific. The square depicting the logo for Dominoes Pizza is actually alluding to their old 30 minutes or it’s free campaign. This refers to a speech given by one of the IHI fellows who mentioned that ambulances in the UK were so determined to get a patient delivered in the “right” amount of minutes, often did not deliver them to the most appropriate destination. Dominoes Pizza changed their policy because of the negative public perception of driver collisions due to the time constraints. People were injured or dying because time limit for a pizza delivery. Imagine giving up your entire motto and branding campaign, to save a life. That was the choice that Dominoes faced and it sounds like it is one the NHS is facing as well.

The matriarch at the head of the quilt is Betty Bundy. She is a stroke survivor and the face of the new Epic EMR rollout at Bellin Health. The yoke of her shirt is the IHI triple aim. It is displayed upside down. When Betty was seen at Bellin no one connected the dots in her care. Later, when the stroke team began to get feedback about her experience it allowed healing to begin.

The center of this painting is framed by two figures. On the right side of this painting stands Everett Davis. As the conference day began I learned about Everett Davis. He worked at Bellin for 44 years. He would sweep out the stairs and everyday he would say, “Have a Good Day, My Friend.” He died on September 2, 2010. In lieu of flowers a memorial fund was created at Bellin. So, in this piece he holds his broom. On the left side, wearing clothes from the 1970’s, stands the Bellin Health CEO George Kerwin. In 1971, he started at Bellin as the head of housekeeping. He is facing Everett with a mop in hand. Both figures stand at the same level looking eye to eye across an expansive plain.

Above and behind these two figures are a series of connected silos. I often hear at HIT events about the need to “tear down silos.” The Oklahoma gal in me is quite upset. We don’t want to tear down silos. Silos are important. They store grain before transport. We need to connect the silos. So, out of each of these silos a telephone pole rises above and transmits data.

The wires themselves suspend and pierce three items and wrap around the figures in the scene. One item is a heart. It represents the love we feel for families and heartache we feel watching patients suffer in pain. Next is a clock. Ann Hale mentioned in her speech that as we bring patients into councils and work groups it is very important that we respect their time.

Finally, there is the compass that alludes to the North Star above it. During the afternoon session Linda Roethle and Randy Ronsman spoke about the new partnership between Bellin Health and NorthStar. The NorthStar group spent a year looking at options and navigating the waters of care and decided a partnership with Bellin would help patients in both geographic regions.

The wires then extend out and connect George Kerwin and Everett Davis. One coils down to Betty Bundy and allows her to communicate by phone with the Bellin Health stroke team. The final wire becomes the thread that allows the quilt to be to be connected in the health information exchange.

The Silos end in a Dark Tower. This symbolizes the Beam Project. On March 10^th I met with Nan Bush from the Bellin Foundation and Allison Gyrzen from the Bellin’s Cancer Team and the Beam Project. Allison has a degree in art education and works at Bellin creating and implementing an arts for healing program called the Beam.

As she described the mosaic work the patients and family members have created as they work their way through recovery, healing or grief, I thought of Fred. I thought of the window stickers we had made with him to adorn the windows of his room. The light shown through those stickers as if they were stained glass, they helped make a clinical room sacred. We had painted things that would make Fred happy. Fred was a huge Stephen King fan and his favorite tale was the Dark Tower.

This sticker was put in his window in hospice and stood for our unending love and reminded us both that no matter how bad things seem as it is written in the Dark Tower, “All things serve the Beam.”

Thank you Bellin Health for inviting me to Green Bay, Wisconsin. I will spread your tale far and wide. Everything happens for a reason. And Stephen King was right, all things do indeed serve the Beam.