Regina Holliday's Medical Advocacy Blog

Bridging the Great Divide

2012-01-30T09:43:00.000-08:00

It was time to choose the picture.

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

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

This painting is defined by the same inescapable energy that is present at every Health 2.0 event. The sky swirls with spiraling blue ribbons of sacred communication. These swirls also allude to conversations on mental health with spirals reminiscent of Van Gogh. The blue waters of the bay are a choppy disconnected counterpart to the sky.

The painting is divided, depicting the two hemispheres of the brain. To the left of the painting we see the right hemisphere showing color, archetypal narrative and the individual patient story. To the right side of the painting is the left hemisphere’s analytical mind. Here a cool expanse of gray matter is covered with the term ROI (Return on Investment), dollar symbols and pharmaceuticals.

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

In this part of the painting, the bride is depicted as a cancer patient. The best point in her life is combined with the worst. The sorrow is palpable. The cancer bride's hair is falling out, and strands are held within her hand. She is reaching for the apple of knowledge. Within that apple is placed an eye. Knowledge without vision helps no one. The apple, the tree and the bride form a classic image. If we have lost paradise in search for knowledge, then do not deny us access to that knowledge. We have paid for it with our very lives.

Above the right brain is a radio tower sending out a swirling pulse of communication. Beside the tower is the futurist Jeff Goldsmith. He is the wolf or the coyote. He looks upon us dressed in sheep’s clothing. He is the often violent spirit of change that rumbles and grows just under the surface of normality.

Between the two brains is a gulf of swirling water that is spanned by a bridge. This is the Golden Gate bridge in homage to the San Francisco location of Health 2.0. Midway across the bridge a baby crawls. The child is fearful for at this point the bridge becomes glass. He must cross the “visual cliff.” The babe must crawl upon glass, but this is no ordinary glass. This is the glass of the smart phone: Gorilla Glass. Thanks to Derek Wade for his post “When Promoting Transformative Change, Have Faith in Your Convictions” we have a quote from my speech: “Gorilla Glass… was sitting in a vault in Corning ware since 1962, waiting for technology to catch up. And that’s what you guys are doing right now, you’re the catch-up. All these amazing things are out there that you need to embrace and teach us how to use correctly…

…Can you walk on glass? Can you take a step forward when you don’t know what’s supporting you? Do you have faith in the technology that you are speaking about, even if you cannot see it, nor prove it, nor say that it’s currently effective, can you convince others about how it’s going to change absolutely everything?”

Below the babe and the glass shield of the smart phone, the other parts of the phone are separating and descending into the turbulent waters. First the screen falls, then the circuit board, finally the phone casing floats upon the choppy waters. There it rests to form a life raft for a figure in the water.

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

If you look at her dress you will see the hour glass of the black widow spider and the metaphor deepens. She is the spider in the web. Known to eat her own kind, she lies in wait for her prey. The bridge around her is no longer supported by reassuring girders, but instead the threads of the spider’s web. She is health1.0: still, static and oh, so very dangerous.

To her left behind the babe, a boy plays the violin. He represents the fiddle-back or brown recluse spider. Potentially as deadly as the widow, but oh so very different, for where you see one recluse you know there are hundreds. They live communally under the busy paths of life hunting and scavenging, never tied down by a web. They are mobile health and health 2.0. Growing up in Oklahoma I saw thousands of recluses and I saw very few black widows. But I know if left together within a mason jar, the brown recluse lives, not so the static web-dependant spider.

Finally to the far right stands Deborah Peel as an icon to privacy. She symbolizes the many conversations about the importance of privacy in health. But privacy over knowledge is not desired by all. Many of us want know about our health and share that information with others. So I posed Deborah Peal as a Statue of Liberty with a torch that has gone out and her book is replaced with a lock. Her lower body has become the peeling apple. Here the apple of knowledge so eagerly sought by the right brain is being peeled and discarded by the left.

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

The Waiting Place

2012-01-23T15:53:00.000-08:00

Oh, the Places You’ll Go, Dr. Seuss

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

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

A place you could sprain your elbow and chin!

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

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

Sonnet 116, William Shakespeare

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

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

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

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

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

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

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

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

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

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

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

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

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

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

All Fields Required

2012-01-20T12:54:00.000-08:00

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

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

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

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

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

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

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

And I am angry.

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

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

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

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

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

A Shining Light in the Darkness

2012-01-13T13:21:00.000-08:00

Kevin Adomayakpor stood beside me as I painted at mHealth 2011 in Washington DC. He had been a speaker the day before and Christine Kraft had heard his speech: The Intersection of Mobile Health and Public Health – Towards Greater Understanding and Collaboration. Christine was so impressed that she brought him over to my easel after his performance. He told me about the work he was doing with OneWorld’s “Learning about Living Project.” He was helping youths in Senegal to be empowered in their sexual health using the tools of mobile technology. Questions that could not be easily asked to the adults could be answered in a non-judgmental way by the computer or cell phone.

Kevin was far from his home of Senegal. He could not just run home and hand me a spare jacket in order to join the gallery. He handed me his other jacket and told me about his journey. He told me quite a bit about the youth of Senegal. He told me about the HIV rate and the misinformation that many young people learn from their peers. He told about the hope for a better future through mobile technology.

I painted this for Kevin: “A Light Shining in the Darkness.”

In this painting, a young woman looks up with uncertainty within a darkened room. She is preparing to text a personal question. Her face is filled with worry. It is hard to talk about this subject and if it were not for a service like “Learning about Living Project” she would have nowhere to turn.

The room is darkened, but there is one light above and to the right of the young woman. People might think it is a window. But this is a silhouette of a phone that shines as brightly as a sun. It can light her path. It can give her hope.

Like many people today, my smart phone has become a central part of my life. It is my alarm clock, my calendar, my camera, my calculator and it even lights my path at night. But imagine what the phone is to this young girl from Senegal.

It is the difference between life and death.

This was the last jacket I painted at mHealth 2011. I could think of no better way to end the day. This is what mobile health is all about.

Time to Care

2012-01-11T19:49:00.000-08:00

When I was a little girl I would stare for hours at the wooden clock upon the wall. I found it quite intriguing. The clock was a little house with a bird that would dip its beak outside its window and cuckoo upon the hour. A little wooden boy and a little wooden girl would meet in front of their doors and share a kiss and then depart. The clock seemed magical and full of hope. The sun would always rise, the birds would always tweet and the girl and boy would always kiss.

But life is not like wood-work clocks with metal pinecone counterweights. Life is unpredictable and sometimes you wake up to find the time piece is still ticking but the boy is lost forever.

And that is how Chiara Bell found me, a lonely widow with a broken heart that refused to stop ticking. She found me with a tweet, asking for a jacket painting like the paintings Jen McCabe wore. I painted her “Caregiver’s Clock.” I painted soul crushing pain upon her back. Here was a clock with no hands to sooth you.

Time passed and Chiara tweeted. I saw her walk away from her first company in order to build a second. She told me the new company would be called Careticker. She wanted to create a company that would make it easier for patients to plan discharge transitions and would allow active communication between the care team and approved family members via text messaging. She asked me to paint once again and I was inspired by the name of her new concept. I asked her, “What do you know about the origin of the ticker tape machine?”

The ticker tape machine was the first digital electronic communication technology to be used in the home. It utilized paper and telegraph lines to print out stock quotes, and like an erratic clock, it ticked; hence, the name ticker tape. It revolutionized trading, for suddenly, one did not need to be on the trading floor to make decisions in a close to real-time fashion.

So I painted this canvas for Chiara. In the background, spool upon spool of ticker tape cascades. To the far left, a family vignette includes a wealthy mother, loving daughter and family nurse as they quietly read the stock quotes spooling amongst them. To the far right, a modern mother rests in the comfort of her home with her little son beside her. She is reading a text from the hospital as a nurse responds via Careticker. A large image of a smart phone unites the two scenes with streaming texts on the care condition of the patient.

A few months later Chiara came to DC to attend the mHealth Summit. I asked her if I could share her booth space. Chiara was presenting in the start-up pavilion and Greg R. Itzenson from our host StartUp Health, offered me my own space beside Chiara. So that is how I came to represent and the Walking Gallery and paint on site at the m-Health Summit.

Over three days I painted five jackets. One of the jackets was for Chiara Bell. It is called Careticker and it is a happy jacket. Here the clock of my childhood is transformed. The background roils with spool upon spool of tape. To the left is the red-hued past filled with a lack of data access, to the right is a blue serene future.

Centered is the clock. Its pendulum swings back and forth, as we totter to the future while lapsing into the past. The classic cuckoo door is wide open and the bird has been replaced with a triumphant patient. Center on the clock face is a smart phone. Here is communication in real-time. Here is a new world of care.

So Chira Bell has two jacket paintings focused on time: the pain of time that has stopped and the joyous flight of time when we are with our loves. That is just and that is right. For I know the origin of the word “clock” it hails from the Celtic “clagen” meaning “bell.” If there is anyone I would trust to ring the bell, either in peals of rejoicing or tolls of warning, it is Chiara Bell.

Steampunk Health

2012-01-10T18:12:00.000-08:00

What is Steampunk?

If you do not count sci-fi geeks and cosplay fans among your very best friends, you may not know about this literary/fashion sub-genre. The steampunk aesthetic arouse from science fiction novels of the late1980’s to early 1990’s. A hallmark of the form is an intermixing of Victorian era technology with a futuristic world. In the world of steampunk, giant floating airships replace airplanes and robots powered by steam can be wound up like clocks. That explains the steam part of the moniker. But along with the futuristic Victorian technology, there is grimy coal-stack poverty within the form. In steam punk fashion, the make do, miss-match dichotomy of distressed smart phones with clock work gears gives one a sense of unease. There is something really wrong with the picture when antiquated forms are indiscriminately matched with modern technology, hence the term is steampunk.

What is Steampunk Health?

Well, that is the title of Ben Merrion’s Walking Gallery Jacket and anyone who looks around the world of health today will see futuristic technology surrounded by anachronistic systems of old-fashioned medicine. Ben Merrion is the Literacy Outreach Specialist for DC Public Library. He has extensive experience as a teacher of adult learners and very involved in social justice in DC. He is even one of the artist members of The Walking gallery having painted the sumi-e style “Holistic Medicine” for Christian Liu.

But this is Ben’s jacket and he wanted to focus on adult literacy and steampunk Daleks. Now some of you might wonder what health advocacy has in common with adult literacy or steampunk Daleks. Well as e-Patient Dave de Bronkart recently tweeted, I am good at pointing out connections and will show you the way.

In this painting, Ben Merrion is dressed in a steampunk fashion. He wears glasses that are affixed with mechanical trifocals. With a concerned countenance, he holds out his hand containing a jar of prescription medicine. The label can be clearly read… if you can read. It states: “1 in 5 District residents can’t read this.” That is a pretty powerful statistic if you apply it to health literacy. How can a patient be medically complaint, if they cannot read their care instructions or warnings about possible side-effects?

Behind Ben, a line of steampunk Cybermen stretch into the distance. Above these cyber figures is the statement: “Uncooperative patients will be assimilated.” If you know your Doctor Who you are very familiar with these cyborgs that vanquish all human emotion and replace it with cold hard logic. If you look closely you will see that upon each cyberman breast plate a there is a FICO logo next to a small capsule. This image harkens back to an epatient.net blog and discussion from the summer.

In June Alex Albin’s post “FICO’s new Med Compliance Score: #FAIL” was cross posted on epatient.net. The blog post explained FICO’s decision to track patient medical adherence via third party data sources. FICO was planning to use a combination of retail purchase history, geo-credit profiles and income wealth indicators to compile a data base that could be used as a tool to judge patients. With this tool providers and pharmaceutical companies could easily tell which patients were prone toward non-compliance.

Yes, the tool could tell you who might be non-compliant and give providers the data needed to guarantee a pool of adherent, assimilated patients. But it could not tell you why they were not taking their medication.

Toward the lower half of the painting is a steampunk Dalek. Dalek’s are also cyborgs and are an arch-nemesis from Doctor Who. They have had every emotion removed except hate. Their pepper-pot form and catch phrase, “Seek, Locate, Exterminate!” permeates pop-culture. The traditional catch phrase has been replaced in this painting by: “Seek, Locate, Medicate” and alludes to a statistic from May 2011 in the Wall Street Journal. 1 in 4 children are on chronic prescription medication in the

United States

So, let me clue you into a few things. The number one blogging key word search term for patients is uncooperative. If you attend medical conferences you will repeatedly hear we are non-compliant. If you listen to specialist like Ben, a large portion of the adult population in this city cannot read at all, let alone complex instructions. And if one in four children is prescribed chronic medication, we aren’t dealing with a compliance problem; we are facing a massive level of over-medication.

So, I think Ben has one of the most appropriate jackets in the Gallery. I really hope he wears it everywhere; for I am steamed about these statistics. And as far as a punk is concerned, I know from years of selling fireworks what a punk is for.

Punks light fires.

DEStiny

2012-01-08T13:10:00.000-08:00

You might know her as @Cascadia on Twitter and see that her tweets cascade in a continuous stream of warning. You might know of her from her time with Group Health and judge her by the values of that organization. You might know her as that questioning voice on a web conference call stridently defending patients, and picture her within your mind as an avenging hero with sword in hand. You might have seen her comments and questions posed to the Society for Participatory Medicine list serve. Her intellect and wit is quite apparent as her comments appear on topics ranging from emergency room design to the Open Notes project supported by the Robert Wood Johnson Foundation.

Or you might see Sherry and think of Lilith.

Do you know of Lilith (Adam’s first wife)? In Judaic mythology Lilith is the one Adam casts away. Lilith questioned, Lilith refused to be subservient and was cast out from the Garden of Eden. That sounds a bit like the Cascadia I know.

This is “DEStiny” a Walking Gallery jacket for Sherry Reynolds.

Sherry/Lilith is the center of this piece. Her right eye is large and all seeing, magnified by the glass before it. She is here to observe the story as it unfolds and through her questions act upon the scene.

In October, I saw this tweet from Sherry.

When I clicked upon the link I watched a story unfold describing the horrible side effects of the drug DES (diethylstilbestrol).

In the 1970's Sherry was only 12 years old, the medical community discovered the disastrous result of fetal exposure to DES. This drug had been commonly prescribed to help maintain pregnancies. Young girls were being diagnosed with a rare vaginal cancer that had never been described in youths. Traditionally, onset of this rare disease occurred in women over the age of 60.

A diligent mother of one of these girls asked the question that led to a flurry of research. She told her daughter’s doctor she had taken DES during pregnancy and asked if there could be a correlation. This alert physician immediately interviewed the other mothers.

They had all taken DES.

Dr. Robert Hoover, director of National Cancer Institute Epidemiology and Biostatistics Program, was very involved in the study of DES and explains the sad ramifications of the millions of prescriptions of DES. DES was discovered in 1938 and was the first synthetic estrogen. It was prescribed shortly thereafter to combat complications of pregnancy. According to Dr. Hoover, in the early 1950’s, there were four clinical trials done to determine the efficacy of DES in preventing complications of pregnancy. It was determined that DES did not prevent adverse outcomes in pregnancy. Unfortunately, while the use started to decline, it was not stopped.

In the early 1970’s studies began tracking the adverse effects of DES on the mothers and their children. In 1971 the

government ordered doctors to stop prescribing DES.

The discontinue use recommendation occurred 20 years after DES was proven ineffective in clinical trials. Sadly, the product continued to be sold for another decade in Europe.

In the late 1980’s-through early 1990’s, Dr. Hoover approached the authors of the prior studies. They agreed to put the data together to form a large study compiling all the adverse outcomes that became the paper: “Adverse Health Outcomes in Women Exposed to Diethylstilbestrol.” It contained relative risks and cumulative risks.

Dr. Hoover pointed out one of the most important lesson of the study: Do not prescribe a drug that has not been proven to be effective, especially not in pregnancy.

Oh, but how we have paid for this lesson. It is estimated that over 4 million American’s were exposed to this drug while in the womb. Many of the daughters are infertile, and/or have rare cancers. Many of the sons have testicular cysts. The grand-daughters are reporting late on-set of menstruation.

But one of the saddest elements of this tale is Dr. Hoover’s comment that when he enters a class to quiz medical students about their knowledge of DES, no one raises a hand to answer his questions.

So this is why we need our Lilith’s and our Sherry’s. We must ask questions, look for answers and find scientifically supported results. Sherry is not the kind of gal who eats the apple without question.
And I cannot see her open her mouth in obedience while a doctor pours an unproven concoction down her throat. Sherry makes the establishment uncomfortable.

She has seen so much through the magnifying glass of experience. She was a volunteer firefighter and paramedic during college. She worked within the AIDS community at the height of the disease and watched so many friends die. She has worked in Health IT for many years and frequently volunteers her time to advocate for patient and consumer rights.

She does all of this as a cast away. She helps create advocacy positions that others fill. She advocates for better health outcomes for our country’s children whilst having no children of her own.

Can you imagine the bravery of Sherry? She is the one who speaks of things not spoken of. She is the one who labors all alone to tell us about DES and so many other tragic things. She is the lonely oracle of the mountain, the center of the heart tree, and what she tells us may be hard to hear, but she tells us all the same.

It is her destiny.

In Case of Emergency

2012-01-06T14:15:00.000-08:00

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.

Washed Away

2012-01-05T21:46:00.000-08:00

I’ll admit it. I am afraid of the garbage disposal.

I think I shall blame that phobia on Stephen King, as I read Firestarter at a very impressionable age. There were many visually terrifying scenes within that book, but I think death by garbage disposal was the most gruesome.

How does one die via garbage disposal? Well, in Stephen King’s work, one of the main characters in the book has a little telepathic ability he calls “the push.” He can push other people within their mind to do things or see that which he wishes them to see. Unfortunately, the poor recipients of “the push” often develop an echo that becomes a ricocheting thought. That ricocheting thought then begins to tear up the poor victim’s mind. The pressure and confusion becomes so bad that death by garbage disposal seems like a good option.

The first time I lived in a home with a garbage disposal was at my Aunt Hilda’s house as a young child. I found the bright yellow enameled sink with its dark steel maw a disturbing juxtaposition. But this dichotomy existed in a happy house, and I could ignore my fears. After all, Aunt Hilda would just laugh and cook and rarely turn the disposal on. Almost every summer of my life I have visited Aunt Hilda’s house. But theses last few years Aunt Hilda had not been there, instead my mother has been staying in the pretty yellow house.

Aunt Hilda had been living in a nursing home as Alzheimer’s destroyed her mind, just as assuredly as a garbage disposal destroyed the contents of its darkened chamber.

I visited her only once this summer whilst in town, and that visit only lasted minutes. Aunt Hilda was methodically chewing food spooned into her mouth by her loving sister Aunt Minnie. She hadn’t spoken in years. But she could still remember how to swallow.

I left her in the nursing home and went back to her house stared into the maw of the garbage disposal.

Then I began to paint Mary Anne Sterling’s Jacket: “Washed Away.”

Do you know Mary Anne? She is the CEO of Sterling Health IT and was the 2010/2011 HIMSS Institute for e-Health Policy Executive in Residence. I have seen Mary Anne at many health IT events in DC over the past two years. She is usually the quiet one in many discussions, biding her time and then surprising us all with her astute analysis and eloquent delivery.

Her dedication to creating a better healthcare system is very personal. She watched her father die a long slow death from Alzheimer’s.

She began caring for her parents while in her twenties. Her father began to suffer the first signs of dementia in his early 70’s. So began their hellish family odyssey. The years and years of care dragged on. The family liquidated all assets to provide care for the father. Twenty years passed by in decline as his ailing wife tried to care for her dying husband. Time passed and Mary Anne’s father had no idea that this beautiful young woman was his daughter. And still her father fell deeper and deeper into darkness. He was placed in a nursing home on Medicaid while Mary Anne struggled to support herself and her aging mother.

Mary Anne struggles so, and thus I painted her. One hand reaches out bravely trying to hold her father’s hand before he is washed away, before he is torn to shreds by a disease as unforgiving as a steel in-sink-erator. She fails in her endeavor and her father dies in 2001, at the age of 95.

In her other hand she holds her mother upon the ledge. She is supporting her physically, emotionally and financially. Her mother looks upon the scene with confusion as mild cognitive impairment has begun to cloud her mind.

Behind and above this scene of tragedy is a window. It is a beautiful summer day and only glass separates these figures from the bright sun and soft breeze. Only glass as hard and restraining as steel separates those stuck within a nursing home bed from the freeing breezes of a summer day.

I painted this in my Aunt Hilda’s kitchen in Oklahoma. A little over a month after I painted this, Aunt Hilda died. I am glad Mary Anne has worn this jacket to events this past fall. As she wears it, the story of her father lives on and so in part does my Aunt Hilda.

Profiles

2012-01-03T09:59:00.000-08:00

Sometimes the most beautiful art swells from the most incredible pain.

I have created art since I was very small. I have cherished the blended line of graphite. I have felt my spirit soar as a swirl of pigment creates a fiery plume within a wet wash of watercolor. I have felt the ache within my shoulders and my fingers as I methodically prick the page and a profile appears.

Do you remember the art of the pinprick? I remember my second grade classroom in Oklahoma. I remember the children with their backs hunched over sheets of paper. Silence reigned within the room as we pressed stickpins upon the page again and again creating profiles. It was February. The room was cold. This was the month for gloves and the paper arts. This was the month of elaborate cards with hearts and loves and lace. This was the month for the faces of presidents.

So each child hunched over a pinprick Washington or Lincoln. Every once in a while a child would lift their sheet then facing the light, a half-finished silhouette of a great man would dance within sunlit dots upon the wall.

The art of the pinprick was painful. It took hours to complete. It was silent and repetitive. This was the holdover art of the Victorian era: a useful skill for a child to learn in preparation for years of labor before a mechanical loom or automotive assembly line. I do not see children create such art in the times we live within. Our lives are lived at such a frantic pace. We create a profile with minutes and place it upon our Facebook page. We do not spend hours pricking a face out of a blank expanse of paper to create a creature of light. We create pixilated avatars and send our electronic likeness through the cloud and within moments span the world.

But some profiles are made over the span of years.

This is Teresa Younkin’s jacket for the Walking Gallery: “Profiles.” I painted it within a few hours and it tells the tale of years won and loves lost. I love profiles. I love the stark silhouette upon the page. So much can be said within outline.

Teresa’s profile reaches up to the profile of her husband David. Ten years ago theirs was a happy family. They lived in Portland, Oregon with their three children who were seven, four and one-years old. They were so happy. Then the diagnosis came. David had primary brain cancer. But David was a veteran and the VA was using a new EHR system called VISTA. The system was new and David was so young. Every attempt was made to help the young couple.

As David and Teresa raced across the country for treatment, David’s data raced before them through VISTA. Their way was prepared long before David saw even saw his doctor. Information transfers that would have taken weeks were accomplished in days. When time was of the essence, David was treated with great speed and efficiency due to VISTA. Teresa still had to hand carry David’s military record and his second opinion records, but the reams of imaging results and other data transferred to and was read by the three doctors coordinating David’s care.

David tried so hard to live.

He had lost his own mother at six to breast cancer. He had so few memories of her. He was determined to live and love. He would create as many memories as he could for his children. David received cutting edge treatment. The entire family relocated to east coast to be closer to his doctors.

David beat the odds. He lived for six years past diagnosis. Six years of birthday parties, and hugs and memories. He saw his youngest child Faith turn six and would reach his 36^th birthday. Then he died on June 6, 2006. 6,6,6,6,6 and the sixes spin on and on within this painting like yarn spinning toward the wheel. For this is a profile and profile comes from Latin: “pro” meaning forward and “filare” means to spin. Some may view an ever-spinning series of sixes with trepidation, but not Teresa. She views them with hope. Three sixes make 18 and in Hebrew that number is the number of life.

And for many a jacket, that would be the end of the tale, but not this yarn. It still unspools. In 2008, Teresa met Jim Younkin online. They met as profiles, electronic people connected by backlit pixilated dots. They talked data and HIT (Health Information Technology), for Jim worked at Geisinger Health System. Only then did Teresa realize the gift that VISTA provided. Only then did she realize how many wives lose their David’s and break their hearts in a world without easy access to and transfer of patient data.

One year after meeting Jim online, Teresa and Jim married. Teresa has a new love tempered by her first. Teresa loves Jim and she also loves HIT. She will do everything she can to spread the word to others. HIT saves lives and helps create memories. Teresa even joined SpeakerLink.org and you can find her profile among all the other powerful patient/provider speakers.

I will never forget Teresa. Her story sears my mind. And as I paint, I wear the ring she made for me. Teresa is a jewelry artist, when not working with HIT. She made this ring. She hunched her shoulders and spooled this wire for me to create a ring much like the one she wears.

Teresa describes the ring: “The stone has deep red sections that sparkle fiery orange flecks of color. I chose this stone for you because it signifies the two things that define your journey right now. If you move the stone around you will see the color orange, the color of kidney cancer. But the orange is not the primary color. The red represents the passion that you have for patient access to medical records. Without the flecks of orange this would be a pretty red stone. Both pieces work in unison to provide a beautiful amalgamation of your experience. The faceted surface represents the changes and experiences that make up your journey. The experience of death is not just one sided, it causes us to experience life in a whole new way.

The stone sits above the silver rings that make up the shank of the ring. On each side of the stone are short columns of silver. These short columns signify the strength it takes to live this life. Neither one of us ever imagined our lives would turn out like it has; face it nobody does. It is what we do with these experiences that help us to carry on. Each column supports the weight of the stone and lifts it to a higher plane.

Living through the death of a loved one does that. You begin to see life on a different plane. Gone are the days of the petty annoyances and inconsequential details. There is a mission in life and the weight of the responsibility can be overwhelming sometimes. You are strong and you continue to protect the foundation of love and continue to honor the life you and Fred started to build for your boys.

The wire that comprises the shaft and the holds the wire together is made of sterling silver. When you start working with the silver wire, it is pretty malleable. Once I have assembled the ring, I put it on a mandrill and bang away until the ring is shaped in a perfect circle. The neat thing about the wire is that the more you work with it the stiffer it becomes. So as I pound on the wire while I am shaping it, it becomes stronger and stronger. It becomes so strong it will hold its shape and not bend. It describes this experience. With each hit, you became stronger and stronger and now you are a source of strength for others.

I wear my ring together with a second ring that I had made while I was in Israel. My ring is gray-the color of brain cancer. The second ring has Jeremiah 29:11 engraved in Hebrew the ring. I wanted the true Hebrew translation to be put on it, which says: I knew in My mind My thoughts about you before you were you. I wear both of these rings on my right hand…because God has held me up with His mighty right hand. Together these rings help me to remember that this journey is not just about me, it is about what God has for me. I am His child.

I am glad our paths have crossed. Life is a tapestry and every experience is a thread that is woven together to make a beautiful masterpiece.”

Thank you Teresa. I am glad to spin with you, to feel the prick of the pin, and to hunch over our labors as the tides of years pass. We shall help create a world in which the Fred’s get the same treatment as the David’s and the children’s memories shall fill with birthday parties, happiness and hugs.

A 2011 Christmas Letter

2011-12-19T16:50:00.000-08:00

I have a few friends and family who send newsletters every Christmas. I look forward to these missives with great joy. In the days before Facebook, it was the only way to stay abreast of the life events of distant friends. In these days of instant messaging and social media, I find them still a wonderful source of information and something more. A Christmas letter is a retelling of one year in the life of a family and it is amazing to see 365 days of important events unfold within a few sparse paragraphs. I love to see the march of time as told by a family matriarch or patriarch. I love to read the words of my late husband’s best friend from college, even if his news is sad to hear.

So, this year I decided to write a Christmas letter. Whether you read this on a page of paper or via backlit screen, know that I am happy to share our life with you this joyous season.

“How are the boys?” I hear this question wherever I go. I am glad to say, they are doing well.

Freddie Holliday III is 13 years old and he grew over the summer and is now almost as tall as his father. His voice changed and he quite likes his new adult voice. He is now in 7^th Grade at Ivymount School in Silver Spring, Maryland. He got an award last spring in his science class for best presentation on his science fair experiment. He collected data about logo recognition rates among preschool children who watch television. It was a cool project.

Isaac Holliday is a five-year-old in kindergarten at Murch Elementary in Washington DC. He is a joyous child and recently had a great deal of fun playing the donkey in the Christmas pageant. He has been struggling with learning to read. We have been very blessed to have my boyfriend-Ben Merrion tutor Isaac as Ben works in the adult literacy department at MLK, Jr. Library and is a wonderful teacher.

Speaking of Ben, we have been dating for over a year and this summer Ben made his first trip to Oklahoma to visit my family. He was such an amazing help in guiding the children through the airport during the trip. I also got to meet Ben’s Mother and sister this fall and we had a grand time.

We also have been blessed to meet the amazing Kait B. Roe. She is patient advocate too. She has recently moved to DC and has agreed to help with night-sitting when I am out of town speaking. We are overjoyed to have her as part of our life.

I am so glad Kait is here to help because I travel a lot to speak and paint about the patient view. I owe a great deal of thanks to everyone who helped out in 2011 while I was gone. So thank you to Ben, Kait, Joan Holliday, Courtney Mazza, Megan Michell, Eleanor Franc, Emily Stewart, Liam Kemp, Pete Wright, Cindy Throop, Shoshannah Kantor, Nora Reno, Miriam Cutelis and Robin McGrew.

This was the year I traveled nationally to speak about our family medical story and the tragedy of Fred’s medical care. I delivered over 20 speeches this year visiting Florida, Oklahoma, Illinois, Missouri, Maryland, Tennessee, Pennsylvania, California, Oregon, Texas and Puerto Rico. Most of the venues that ask me to speak also allowed me to paint onsite. It was amazing to set up in the back of grand ballrooms and paint the words spoken at these august events filtering the images through the patient view. Most venues asked me to deliver a second speech at the conclusion of the conferences explaining the paintings created over the days of the conference.

In June of this year Charles Denham, MD offered me a one year fellowship with TMIT (Texas Medical Institute of Technology). As part of the process of being a fellow, he asked me what TMIT could do to advance patient advocacy. I mentioned that conference attendees wrote to me after my speeches telling me how much the patient story was affecting their lives and profession. They were asking for other speakers like me. While within patient communities people who wished to speak often had no way of becoming connected to facilities that needed patient speakers. So when Chuck asked me his question, I responded that we needed a patient speaker’s bureau. For the last six months Chuck and the great team at TMIT have been doing exactly that.

We now have a site called SpeakerLink.org and over sixty speakers have completed profiles and many providers have logged on to find likely speakers. Thank God that Chuck Denham and the TMIT team met me a little over a year ago. SpeakerLink.org is such a blessing!

Another amazing creation in 2011 was The Walking Gallery. In April, I attended the opening of a new Kaiser Permanente facility in DC called the KP Center for Total Health. It was a lovely place: a medical facility lit like a gallery. I immediately wanted to have a gallery show in the space. But we would not pound a single nail. All the art would be worn on the backs of business suit jackets and lab coats. Ted Eytan, MD with KP thought it was a great idea and the KP team thought the proposal over and by the end of the month we had approval. At the end of April, I and five other artists began to paint. On the night of June 7^th 54 people walked with fine art paintings depicting patient stories on their backs. It was an amazing and sacred experience.

At this point there are 107 jackets in the Walking Gallery and the movement grows larger each day you can view the entire gallery at Welcome to The Walking Gallery - Regina Holliday's Medical ... Those that walk in their jackets have attended events and medical conferences throughout the

United States

and in a great deal of Europe. We now have walkers on five continents spreading the power of the patient story.

So that was this year. We are well, happy and so very blessed. And I hope 2012 is another wonderful year filled with advocacy and loving friends. God bless you as you each walk on your own path and I hope to see you along the way.

Love,
Regina, Freddie and Isaac.

2011

Remember Your Hollidays

2011-12-19T12:30:00.000-08:00

Please consider following the entries on

CareMoms as well my regular entries from this advocacy blog.

This is a cross-post from that blog.....

A little over a year ago I met Dr. Chuck Denham, CEO of TMIT (Texas Medical Institute of Technology) on the Stage of the Quality Net 2010 conference in Baltimore. I had just finished a moving speech about the importance patient/family access to the electronic medical record. After I finished speaking, Chuck decided he must meet with me. Before we had even begun the after speech Q&A, Chuck asked me if I would like to be involved in his massive patient advocacy project with TMIT hosted at SafteryLeaders.org. I said yes, and we announced on stage that we would work together to promote great positive changes in patient safety in 2011.

Soon after that, I met with his film team. We filmed a short video at IHI in December 2011. It was entitled Remember Your Hollidays. The film team of Colin Gabriel and Matthew Listiak edited it the video quickly and it was posted on youtube in late December.

Throughout the spring I had conversations with Chuck and Laura Slayton,social media guru at TMIT, about the various safety initiatives of TMIT, including a concept called

CareMoms — SafetyLeaders.org The focus of CareMoms, as defined by SafteyLeaders, is to engage and develop leaders – who are moms, dads, grandparents, sons, and daughters in the community. These people can bring their power of persuasion to reduce healthcare accidents that cause more than 200,000 deaths in America, and many more globally. These CareMoms/Dads can rally around their local hospitals and give them concepts, tools, and resources that hospital leaders and healthcare governance boards need to "chase zero" accidents and win the war on healthcare harm.

After discussing this concept with Chuck, I designed his jacket for the Walking Gallery, a patient advocacy movement consisting of wearable art, using an image of a universal and infinite CareMother encircling our world.

Soon Chuck asked me what I would recommend as the greatest thing that TMIT could create to further the work of patient advocacy. I told him a Speakers Bureau for patients.

For the last six month, the TMIT team has been doing exactly that.

So, last week at QualityNet 2011 in Baltimore I saw Chuck once again upon the stage. He spoke of the amazing patient safety initiatives on the way and he encouraged the entire crowd to visit

SpeakerLink.org: a site where seeking facilities can find health policy speakers with a patient or patient-centric view.

I tweeted my joy from the back of the room upon seeing our dream become reality. Then the actress and patient advocate Alicia Cole began to speak. She told a powerful story of her brush with death due to a hospital inquired infection. She spoke in loving terms of her Mother and Father who stood at her side as steadfast advocates, thereby saving her life. She mentioned how her mother saw a black spot no larger than a dot from a sharper marker. a dot that would have grown and killed Alicia in hours without her Mother’s intervention.

Alicia was an amazing patient speaker and encapsulated the reason why we speak. Her words can change our world.

Please remember us this Holiday Season. Remember the Hollidays. Remember the Alicia’s. Remember the black dot that was not a speck of coal within a Christmas stocking, but instead a speck on Cole. Remember a mother who saved her child.

Happy Holidays to all the CareMoms, CareDads and the patients who suffer; we shall be thinking of you.

A Mighty Bridge

2011-12-14T20:49:00.000-08:00

Have you ever watched Phineas and Ferb? It is a great family show on the Disney Channel. The show centers upon the boy Phineas and his step-brother Ferb and the fun-filled days of their summer vacation. In every episode Phineas and Ferb create some amazing mechanical construction in their backyard. They have an older sister named Candace who tries to show their mother these secret impossible contraptions. She always fails and the backyard is returned to its normal state by the end of the episode.

I was watching an episode with my five year-old today called Roller Coaster: the Musical. In that episode the boys build a gigantic rollercoaster in the backyard while performing a great deal of singing and dancing. Early in the episode Ferb delivered a line about singing in relation to roller coaster construction that caught my attention.

Well, just the fact that Ferb delivered a line caught my attention. Ferb is not as taciturn as the pop culture icon Silent Bob, but for the most part Phineas does all the talking.

Today’s verbal exchange was very interesting in light of a project called Speakerlink.org I have been working on these past many months:

Ferb: Hmm, what assurance would we have that everyone else will also break into song and do the same thing?

Phineas: I don’t know, I think they probably will.

Ferb: Fair enough, I’m in.

Phineas and Ferb were building a roller coaster. And I am glad the two characters were willing to try to create such an intricate construction even if they were somewhat concerned they might fail. I am glad the very analytical Ferb was willing to leave his comfort zone and without any quantitative data to support his decision. But the problem with roller coasters and the plot of every episode of Phineas and Ferb, is that in the end you end up where you began.

It would have been much better if they had built a bridge. Bridges may not be as exciting as roller coasters but they take you down the path. They create a link for communication and you most definitely end up in a new place.

How are bridges built?

We began talking about a patient speaker’s site at HealthCamp DC on June 8^th 2011. A core group of healthcare advocates met in a breakout session. Trisha Torrey, Matthew Browning, Whitney Zatzkin, Carol Torgan, Cindy Throop, Laura Slayton and Chuck Denham were just a few of the advocates in the room.

On August 19^th, Trisha Torrey and I flew to California to present a webinar with Chuck Denham and the folks from TMIT about the concept. There we live-tweeted and spoke for over an hour about the benefits of patient speakers.

And whilst we spoke of the power of patient speakers Trisha wore a painting on her back. She wore this painting:

I can think of no better picture to represent what SpeakerLink.org is trying to accomplish. Here is the place where the provider can meet the patient; here is a place where positive change begins.

Since August we have been promoting the Speakerlink.org within our social media circles. For the past two weeks we have been inviting people to fill out profiles before we announce this amazing resource on the stage at a CMS event Called Quality Net 2011 in Baltimore MD on December 15^th.

There are currently 61 speakers on speakerlink.org. They hail from 25 states. 17 are also members of the Walking Gallery. They are doctors, patients, tech gurus, nurses, authors and advocates. All of them agreed to sign up and speak out, many for the first time about their patient stories. I wondered if any paused before making their profile public and wondered who would agree to “sing” with them. There is a certain safety in staying quiet. Perhaps one would look the fool upon the stage if they said the wrong word and could not understand the culture of the watching crowd. There is bravery in being willing to speak.

And I thank these speakers for stepping forward.

Dan Ford — Oro Valley, AZ

Rebecca Price — San Diego, CA
Gary Levin — Riverside, CA
Julia Hallisy — San Francisco, CA
Martine Ehrenclou — Los Angeles, CA
Diana Galarza — Moraga, CA
Anthony Galarza — Moraga, CA

Jennifer Dingman — Pueblo, CO

Matthew Browning — New Haven, CT

Kait Roe — Washington, DC
Regina Holliday — Washington, DC

Bruce Ramshaw — Ormond Beach, FL
Carolyn Capern — Orlando, FL
Maria Mangicaro — New Port Richey, FL

Sue Sheridan — Boise, ID

Pam Yoder — DFW or ORD, IL
Arlene Salamendra — LaGrange, IL

Tobias Gilk — Overland Park, KS

Keith Boone — Randolph, MA
e-Patient Dave deBronkart — Boston area, MA
Sarah Mahoney — Boston, MA
Nancy Finn — Needham, MA
Alicia Staley — Boston, MA

Meredith Gould, PhD — Baltimore, MD
John Burke — Finksburg, MD

kathy day — Bangor, ME
Becky Martins — Midcoast, ME

Celeste Castillo Lee — Ann Arbor, MI

Lisa Fields — Greensboro , NC
Josef Woodman — Chapel Hill , NC

Brian Christensen — Grand Island, NE

Lori Nerbonne — Bow, NH

Marcia Lee — Albuquerque, NM

Michael Painter — Princeton , NJ
John Phelan — Princeton, NJ

Howard Luks — Hawthorne, NY
Shwen Gwee — New York, NY
Dale Ann Micalizzi — Schenectady, NY
Jessie Gruman — New York, NY
kathy kastner — Orchard Park, NY
Trisha Torrey — Baldwinsville, NY
Jen Dyer MD, MPH — Columbus, OH
Christopher Jerry — Cleveland, OH

Brian Ahier — The Dalles, OR

Kent Bottles, MD — Narberth, PA
David Lee Scher, MD — Harrisburg, PA
Jane Sarasohn-Kahn — Phoenixville, PA
Tricia Pil — Pittsburgh, PA
Mary Ellen Mannix — Wayne, PA
Teresa Younkin — Danville, PA
E Michael D ("Mike") Scott — Philadelphia, PA

Pat Mastors — Providence, RI

Aaron Jaffe — Memphis, TN
Melissa Hogan — Nashville, TN

Israel Robledo — Midland, TX
Joleen Chambers — Dallas, TX
Fred Trotter — Houston, TX

Helen M. French — Waynesboro, VA
Jane Davis — Fairfax, VA
Whitney Zatzkin — Burke, VA
Casey Quinlan — Richmond, VA

Embracing Failure

2011-12-14T13:44:00.000-08:00

1977, three bright students who graduated from Stanford University had an idea. Using a mimeograph machine as a printing press, they self-published a book. They set up on street corners and distributed the work by bicycle and backpacks.

The name of the book was Juggling for the Complete Klutz.

The book launched a publishing company named Klutz Press. I am sure you have seen Klutz Press books. They are very distinctive because the book is usually packaged with all the materials needed to complete an art project, science experiment or some type of athletic endeavor. Klutz Press has literally become a fixture in the world of book and toy stores selling millions of books since it was first created by three young people who thought anyone could be taught how to juggle.

They did that by embracing failure as a core design feature. If you have read the Klutz juggling book you know it is full of uplifting cartoons and funny comments about the challenges inherent in juggling. It tells you the many tricks of the trade and explains technique. Most importantly, the book is sold with three square soft juggling balls.

It comes with these three practice balls, because you will drop the ball.

You will drop the ball again and again as you learn to juggle. The balls are square so they will not roll. They are soft so they will not bounce. This book is a best seller because it embraced the lessons that failure taught.

I wish there was a klutz press book called “Juggling Sorrow: Medical Error, Harm and the Patient/Family Apology.” I know exactly which supplies I would package with that book. I would package envelopes, pens and stationary. And just like any other Klutz press title I would even pre-print the first few lines to make it easier. Each piece of paper would say

Dear _______,

I am so sorry. This is what happened:

________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Now, was that so hard? Was that something a grieving mother should wait 10 years for?

Do you know Dale Ann Micalizzi? She is an amazing woman and patient advocate. And this is her painting for The Walking Gallery: “The Tale of Two Justin’s”

She posted an incredibly moving post in September of this year about a letter it took her ten years to write.The Letter that took me ten years to write… In January 15, 2001 eleven-year-old Justin underwent a simple surgery to drain an ankle infection. He never awoke again and died the next day. Dale Ann and her family began asking questions immediately but they did not get answers. Instead they were treated to a wall of silence and began a lawsuit against the provider. Dale Ann endured the utter hell of a lawsuit just trying to find answers. And she did not stop there. She spent the next ten years doing advocacy work to help other families to prevent the kind abuse she and her family suffered.

Almost ten years after the fatal event that led to Justin’s death, someone reached out to share the true sequence events with Dale Ann. He said he could no longer live with himself knowing that she was still searching for answers. Justin had been overdosed with the wrong medication: Phenylephrine.

So in Dale Ann’s painting she has two sons named Justin. To the left a young Justin sits. He holds a book open. It is the book of Justin, the book of his life. He is a happy child and frozen forever in his youth. In the center in front of Justin’s garden, Dale Ann sits. She holds a letter of apology that explains the events that led to Justin’s death.

To the far right is another Justin. This is the Justin of uncertainty; this is the Justin of what-ifs. Justin would be young man today. He may have looked something like this young man. This Justin holds a closed book and represents 10 years of advocacy and searching for a resolution.

Here we reach the balance point of Dale Ann’s life with Justin.

She held him close and loved him dearly as a living child for a little over a decade. And for a decade more she held him close as a memory engulfed in a roaring chasm of questions.

Now the book is closed and there can be one Justin. And that is just and fair and right as Justin’s name itself.

But Dale Ann will continue her journey so others shall not suffer. She will work with providers to help them embrace the lessons of failure and share the healing power of knowledge with others.

The Female Condition

2011-12-07T18:13:00.000-08:00

I know Michelle by a superhero name. She is @cyberslate on Twitter and her avatar is a green She-Hulk. She is super cool. But I didn’t know how cool until the mHealth Summit, for as I left the hall on Monday. I heard, “Is that you Regina?” I whipped around to see Michelle. I asked if she would like to split a cab with me as it is rather expensive to get back to the city from Washington Harbor. She said, No, she had driven out, but would be glad to give me a lift back. She proceeded to give me lifts to and from the conference for the next two days. We talked about everything under the sun including the female condition.

Now you may think I mean that we spoke role of women in tech, and we did speak a little on that. After all Michelle is the Enterprise architect and founder of the Women in SharePoint, DC. But we spoke specifically of her jacket for The Walking Gallery.

This is Michelle Strah’s jacket: “The Female Condition.”

This is a painting of Wonder Woman.

But this is very different Wonder Woman. She is a patient and she has suffered from domestic violence. Her eye is bruised; her customary golden tiara has been replaced with a bandage that seeps blood. Her indestructible golden bracelets are removed and in their place is a layered mesh of hospital bracelets that coil around her arms. Her hospital gown is half torn off, revealing most of one breast. This is the kind of hospital gown that snaps across the shoulders. It is never good to be in one of these gowns, it means the patient is using an IV and cannot take off a traditional gown.

This is a sick and injured Wonder Woman. But look at her; so brave, so willing to take on the unjust world. She arches her back and bares her chest. Her arms are loose with muscle well-defined and she is ready for a quick defense. These words she issues forth, “Being female is not a pre-existing condition.”

Cyberslate is brilliant. She has a PHD and can talk circles around most tech gurus. I could paint so many pictures about his woman, but this is the most important one.

For even Wonder Woman can fall, even the best and brightest among us can feel the steel gauntlet of abuse. And when that happens, or if that happens, we want to be treated with dignity and respect. We want to be able to receive treatment at any hospital in this fair country without losing future health insurance coverage due to our status as a victim.

Thank you Cyberslate for your willingness to speak out for us all, it is your bravery that shall rule the day. When I painted this I thought of you as the lone Amazon fighting against a world of injustice, but now I know you are a super friend.

I learned the origin of Cyberslate. I learned that on August 5^th, 2009 Michelle was a new resident of DC and to meet friends who shared her interests she decided to join a brand new meet-up group: Health 2.0 Stat. That night she performed her first ignite-style speech. She was one of three speakers. The other two were David Hale from NIH and Mark Scrimshire organizer of the ever popular Health Camps.

It was amazing night.

After their speeches David and Mark found out that Michelle had never heard of Twitter. Right then and there they built her profile and Cyberslate was born.

On that day some super friends began to meet each other. But they had no idea we would one day don our capes and mantles. We had no idea that our group of healthcare heroes would one day walk as a mighty force of justice called The Walking Gallery.

Minutes of Sunshine

2011-12-07T16:30:00.000-08:00

Do you remember the little red wagon of your youth? I remember mine.

I remember the rusty grit of the metal and the embossed grove design on the bottom of the carriage. I remember the wagon was an excellent tool to load piles of fall leaves or dozens of Oklahoma’s native pecans. If my sister Esther and I sat cross-legged we both fit within the wagon as our brother pulled us down the sidewalk. But oh, I would squeal for joy when I would lay down alone in the bed of the wagon and my brother would pull me along. The clouds would race in the sky above me and my hair would rip across my face as we careened down the sidewalk. It would never last long. My brother was only a child himself and could only pull at racing speed for minutes, but how I cherished those minutes of sunshine.

When my husband Fred was sick he was not pulled in a red wagon. He was lifted onto a gurney and strapped in place 46 times for transport. He was rolled out of hospital doors and into transport ambulances where EMS teams would transport him for radiation or other treatment. I did the math once and realized that Fred experienced an accumulated three hours of sunshine and fresh air during his eleven weeks of hospitalization due to transport..

He loved his minutes of sunshine.

Fred was sick during the spring of 2009 inWashington, DC. If you have ever been to the DC area in the spring, you know our fair city is bedecked with flowers. I remember transport after transport where the blossoms would gently fall upon the gurney as the EMT would push through the doors of the radiation facility. Then the EMT team would leave us in the hall. Gurney after gurney would line the hallway like cattle in their stalls. I would stand by Fred and hold his hand as strangers and technicians would brush by us headed to the waiting room or the chemotherapy suite.

Fred would close his eyes and avoid the stares of strangers and the fluorescent glare of the blinking lights of above. He would wait and suffer until it was time for transport again; until it was time for falling blossoms and minutes of sunshine.

All of these thoughts and memories flew through my mind as I spoke to David Collins.

David Collins is the senior director of Healthcare Information Systems at HIMSS, the largest U.S. cause-based, not-for-profit healthcare association focused on the use of IT and management systems for better healthcare. I saw David in person at the mHealth Summit in Washington, DC. He wanted to talk to me about potentialy speaking at a HIMSS event. I wanted to talk to him about joining The Walking Gallery.

Then David did something very few Gallery members have done. He took the jacket off his back and joined the Gallery. He stood in a busy hallway in his dress shirt and poured out his heart and told me why he works on HIT (Health Information Technology).

Davis was once EMS. He provided traditional emergency transport, worked private EMT transport and worked within the hospital itself. He helped patient after patient. He saw cancer patients lining corridors like cattle in stalls. He saw patient information lost between facilities and saw how patients suffered when their treatment was delayed by lost data and poor communication.

He saw so much that he went back to school to study HIT.

This is David’s Jacket: “Minutes of Sunshine.”

This is what I saw when I stared into eyes haunted with the pain of many yesterdays. But I am so glad that David did not give up. I am glad that David decided to dive into a field that he thought could create the greatest positive change.

In this painting only the center is serene. This is the stillness of a moment. In this moment a younger David pulls the gurney with the help of another EMT. The patient looks above to a beautiful blue sky filled with cotton candy clouds. I wonder if this patient feels as I did in my little rusty wagon. Does he rejoice that he is still alive when death looms so very near? David looks upon the viewer as he transitions from the stillness of the past into the speeding present. Time is a smear of paint upon a jacket. Now time is speeding up. Now Meaningful Use is marching through its measures, EHR venders pop up like mushrooms after rain and David looks upon it all to judge safety and quality of systems.

As David left the Mobile Health Summit with his Jacket on his back, I saw him from a distance. From a distance the patient head looked less like a head resting on a pillow and more like an eye staring back at me. Yes, there is an eye in HIT. It is the Patient view. Thank God, David has that view firmly in mind.

Painting the mHealth Summit

2011-12-06T05:39:00.000-08:00

Yesterday I had the privilege to paint at the mHealth Summit in Washington, DC. I was in booth 135-6 in the Start-up Pavilion hosted by StartUp Health. I came to the conference because Chiara Bell was showing her new product: CareTicker and asked me to attend. I responded by begging to have space in her booth to paint jackets for The Walking Gallery. She asked Gregory R. Itzenson if we could share the booth. Gregory responded back there was still time to reserve my own space. Due to the diligent work of both Chiara and Gregory, I had a booth in time for the show.

Sadly, this did mean I would miss IHI in Florida this year, but I was sure the many wonderful patient advocates that attended IHI would represent the patient view. I knew I would be one of the few patient advocates attending Mobile Health. I also was so glad to hear The Walking Gallery would be represented in both places. Mary Ellen Mannix would wear her jacket “Never Enough” and Dale Ann Micalizzi would wear her new jacket “Tales Two of Justins.” It was great to represent both The Walking Gallery and the launch of the new healthcare/patient speaker portal: SpeakerLink.Org.

So at 11:00 am in the far corner of the exhibition hall I painted on the jacket of Robert J. Filley. He is an artist member of The Walking Gallery who has painted three jackets and is also the husband of Anita Samarth the co-founder of Clinovations. He asked me to paint the jacket he would wear. So I painted the Mobile Health Summit on his back.

This is Bob’s jacket: “mHealth.”

In this painting the logo image of the “m” becomes the center of a clock face.

From the “m” a Wi-Fi signal emanates and grows larger forming into birds. These are birds of peace and freedom. For this is the promise of mobile health wherever you are mobile health can help you, be it in an African savannah or a hospital bed. These birds fly above a curtain created from the colors of mHealth conference. Behind this curtain two figures stare at the viewer.

These are the patients.

Several people spoke to me while I was painting. They asked, “What purpose could art serve at a technology conference?” Well, art is just tool as tech is just a tool. They are tools to communicate with patients. We must never forget all of this exists to help patients have a better health experience.

Finally to the far left and on lower part of the painting, there are clock hands. It is three o’clock. It is three o’clock for a few reasons. One reason is hospitals often have early morning blood draws or vitals checks, which is great for the hospital system but not so good for a sick patient who needs rest. It is also 3:00pm for moment in a conference day when exhibitors are so very tired, yet they still stand on aching feet and smile as they answer questions.

And it is three o’clock because at 2:55 pm Anita Samarth found my booth and I explained the vision of this jacket. I am so glad her wonderful husband will get to wear it, but until then it will hang in the offices of Clinovations telling one and all about the communication power of Mobile Health.

SpeakerLink.org

2011-12-01T20:41:00.000-08:00

When I think of SpeakerLink.org, I think of the strength of a chain. I think of the power inherent in each link and of the smiles of a little boy named Isaac.

When my son Isaac was only three years old his favorite toy was not a toy at all. It was a chain. It was a heavy 16-foot-long chain. He would drag it along the floor and pretend it was a boa constrictor. He loved that “snake.” He would lift its heavy coils of links and smile in ecstasy. I suppose some parents would not let their children play with a heavy chain and lift its steel links. But, I thought that as long as it was supervised play, it was a great type of play and fulfilled Isaac's need for deep pressure.

After all, as a child I too lifted chains. My father was a junk dealer and he sold many types of chains. I remember some links that were as big as my fist. Those chains were so very strong. I learned a lot about chains. They were strong but flexible: able to bear great weight.

They were so strong because of the links. Those beautiful curved zeros of steel would glide out of my hand as I placed them on the flea market stall floor. One link after another would fall. First on its edge then on the flat, I remember it as a repeating series of 1's and 0's gliding by like some type of iron-age binary code.

The links were important in that they made the whole. A great burden could be lifted by the strength of such a chain.

I am inviting you to be part of a chain today, a really important chain.

For the past six months, the team from TMIT (Texas Medical Institute of Technology) and I have been working on a project. Well, really they have been working on many projects. They have made films on patient safety, worked on standards, and went to meeting after meeting with thought leaders on better patient care.

But the one project I have worked with them on is Speakerlink.org.

Six month ago TMIT CEO Chuck Denham, MD, asked me what did I think was the most important thing TMIT could do to improve patient care, safety and advocacy. I told him we needed a patient speakers bureau. He and the rest of the team broadened that vision to include speakers from every segment of society who identified with a patient centric view.

Today our dream is a reality. This is what you will see if you go to

SpeakerLink.org

And if you click on find a speaker you will see this.

If you scroll down you will see more speakers. You will see more amazing people who have decided to change the world, who refuse to accept phrases like “that is just the way it is.” You will see mothers who have lost sons and wives who have lost their husbands, you will see people who have lost so much.

But they have not lost hope.

You will see people who have dedicated their lives to guiding health policy. Individuals who have devoted years to health information technology and patient safety legislation have profiles on this site. And you will see regular citizens who have no training in rhetoric here as well. They speak because they must. They speak because they are brave and are willing stand up and speak out if they can make a difference by sharing their story.

But this site is missing something. It is missing you.

Register as a speaker. Speak for those you love. Speak for the anonymous millions that exist as a cold data set with no emotional impact. Be a speaker from experience with patients you have helped or as the patient you have become.

Be a speaker for the dead.

But most of all speak. For your voice is mighty and true. It swells and fills the auditorium and fills the mind. You have the power to change things. You have the power to be part of a chain reaction.

For the hospital boards, the-C suites, the QIO’s, the Physician and Nursing Groups, the Venders and the Patient Communities are all links in a mighty chain of care. Speakers connect these groups, speakers go from place to place introducing new ideas, different cultures and share the wisdom stored in so many silos of medicine. You can become the link I know you are; for you have been through the crucible and have come out the other side. You have been forged into the finest steel: flexible yet strong.

So, here is my request. Sign up. Become a speaker. Change the world.

No More Clipboards

2011-11-30T17:01:00.000-08:00

There are over 100 jackets in The Walking Gallery; many of them depict medical errors and family tragedies. A few of these paintings depict multiple errors. Eunita’s Winkey’s Jacket “No More Clip Boards” is one of these.

I met Eunita in a comment section of a blog.

“They never took his sock off”: a parable of patient empowerment ...

In the December 2010, Susannah Fox posted a blog post that had an embedded video of Alice Tolbert Coombs, MD. In that video she described the story of a patient. The patient, a black 70-year-old life-long insulin dependant male, presented to an internist (who was not his regular doctor) with toe pain on February 1^st 2010. The doctor said that from the patient’s description of his pain it sounded like gout. The doctor prescribed a medication for gout without ever removing the man’s sock. The doctor then offered the patient an alternative medicine to insulin.

On February 25^th, 2010 the patient returned with complaints of increased toe pain and generally not feeling well. The doctor ordered another medicine for gout.

Once again the doctor did not remove the sock.

He recommended the patient to a physical therapist down the hall. The patient walked down the hall and the therapist asked him to remove his shoe. He mentioned to the therapist he had some residual weakness from a prior stroke, therefore he was unable to bend over to remove his sock. She untied his shoe pushed his sock down a bit and attached an ultrasound device used to test diabetics.

She never took his sock off.

By March 5^th he was in so much pain he went to see a podiatrist- a foot doctor. He was admitted to the hospital. His leg was amputated. He died less than a year later from the complications of his illness.

This man was named David Bynum and he was Eunita’s father.

So, on Eunita’s jacket I paint her father with one foot in a coffin. He is wearing a patient gown and is reaching up trying to help Eunita, but he cannot reach her. His other foot is in the open air. His sock is lovely and white and for all of eternity never taken off.

This would be enough pain for any jacket painting, but there is more to Eunita’s story.

Remember the pain game? When my sister and I were little children hanging the laundry on the clothesline, we would often rest between our labors. Standing in the Oklahoma sunshine we would take turns placing clothes pins on our fingers. If we were in the house working on homework we would forego the clothespins and settle for a handy clipboard. Each of us would place our fingers underneath the cold steel with its tight spring and watch and wait. Who could take the pain the longest?

As I learned more of Eunita’s story, I thought of clipboards. In this painting Eunita is stretched taunt, her wrists caught beneath the steel of the board’s clip. She is dressed in a wedding gown.

In 1997 at age 38, Eunita started trying to conceive a child by taking Clomid fertility drugs. Eunita was a newly wed in 1998 and at the age of 39, she attempted an in vitro fertilization procedure. In 1999, the IVF physician signed a report stating that she was 49 years old, which was 10 years older than her correct age of 39. No date of birth was listed on the report to bring attention to the error. In addition, the IVF physician stated that Eunita had previously taken two cycles of Clomid treatments in 1987. Eunita did not begin treatment until 1997. Her chances of becoming a mother at 39 would have been far greater than at 49.

Unfortunately, due to lack of records access she did not learn of this error until 3 years later. When she was able to read the entire medical record she was aghast. Out of the 15 doctor visits, her name was miss-spelled 10 times. The first and last names were completely misspelled; these were not just typos. Treatments and other information were also incorrectly recorded in the Ob/Gyn’s notes. Treatments that she requested were never noted. In addition, the hospital that performed her eventual surgery listed another person’s name on her record.

Due to the 10-year error in Eunita’s age and other erroneous statements noted in her medical records, she was given a total hysterectomy (removal of uterus, cervix, both ovaries, and fallopian tubes). It left her scarred for life.

So, in this painting her womb is removed and her arms are pinned down and held in place by a clipboard engraved with the words: “Medical Records.”

Eunita has lost so much in life because of errors, neglect and poor management of her medical record. She could have given in to despair. But instead she created a non-profit organization: Atwinds. Within that organization she promotes a Medical Records Awareness Campaign.

I thought of Eunita when I was first followed on Twitter by a PHR company named @NoMoreClipboard. I even sent them a photo of her jacket.

On November 17^th I had the honor of seeing Jeff Donnell,  president of NoMoreClipboard present a speech on a panel at the ONC Annual Meeting. The panel was entitled “Educating and Engaging Individuals in Their Care.”

He was hilarious and was one of the most patient-centric speakers on a panel of patient-centric speakers. He talked in a down to earth fashion about the challenges patients face when they try to access their data. He promoted the concept of “free range humans.” Your medical data should not be kept in a cage. He spoke of how pop culture can affect workflow, for example when a new version of Call of Duty is released, it very much affects the cognitive ability of his staff. I could tell that Jeff and the folks at NoMoreClipboard understood life is messy, hard to quantify and often painful.

I am glad there are individuals out there like Eunita and businesses like NoMoreClipboard advocating for us. I am glad that when they see a clipboard they want to overcome it and make a better system.

And I know if I played the pain game against Eunita I would lose.

Top 10 Surgeries This Christmas Season!

2011-11-29T18:11:00.000-08:00

Many of you know me through my work in medical advocacy via writing, speaking or art. But a few of you know me as Reggie, the red haired gal who worked at the toy store Barston’s Child’s Play for 12 years. Every Christmas season since Fred died, I have come back and helped out during the holidays. I slip back into my role in retail sales, with a little comfortable sigh. It feels like slipping into a favorite comfortable shoe. This is the job I have done most my adult life.

My current job as a patient advocate can be scary. I fly to places I have never visited to speak to people I have never met. I then pour out my soul using a paintbrush and a voice. I think all those years at Child’s Play prepared me for the work I do today.

It is the holiday season and people come into the store with lists of the hottest new toys or with a copy of The Washington Post gift-giving guide in hand. And they ask us “Do you have this or that?” Often our answer is: no. We tried out that toy and it was not good enough to meet our standards. It did not have enough play value or it was poorly designed.

I wonder what people would think about a headline that read: “Top 10 Surgeries this Christmas.” I hope they would be aghast. I hope they would not pick a surgery merely based on its popularity. Yet, people often pick toys this way and it makes as much sense.

See, Child’s Play is a specialty toy store. We ask you questions, we suggest products based on a child’s interest, age and ability.

I chuckled at @midewifeamy or Amy Romano’s Facebook status line the other day:

“My goal this year is to choose holiday gifts for my kids that will make them really happy and bring them joy, and that are not gross mass marketed garbage. I'm OK with popular toys but I think they should be popular because they're really fun or engaging. So, share your favorite gift ideas for 5-7 year olds. I need ideas.”

Amy is my kind of customer, she is asking for a toy that is a good fit for her children. She is as much an informed consumer as she is an informed advocate.

Yes, years of working at Child’s Play taught me many things. It taught me how to listen. It taught me how to gather information and prescribe just the right toy. And it taught me how to have hard conversations.

Recently, I posted a blog about Engage with Grace, living wills and end of life. That post was cross-posted by Disruptive Women in Medicine. Whilst looking at the cross-post, I read another article by Randi Kahn, Amplify team member, on palliative care, end of life and the barriers that prevent providers from having hard conversations with their patients.

Disparities in End of Life Care and the Barriers that Facilitate Them

In response to the article, I thought of Child’s Play and specifically Steven Aarons and his wife Simmie Kerman who are the store managers. I thought of the many years they modeled how to have such conversations and gave the space and time to allow all of us to address these traumatic moments in a life.

A lot of our toys are used by occupational therapists, speech language therapists and child psychologists, many of these professional refer parents to our store. We also get referrals from local private schools and testing services. We often help customers in the moments after they have been given the devastating news that their child has a learning disability, sensory integration dysfunction or autism.

We gently show them potential choices that might help with therapeutic play. During these consultations, I have often helped a customer for over an hour even though they only buy a few items. The parent often needs the conversation more than the toy itself. It is hard but it so worth it. It is such an honor to help people at such a point in their life.

Sometimes no one has told the parent why he or she was sent to buy such toys.

Sometimes we have to have the hard conversation.

I will never forget the day I helped the young mother. She came in with a list of toys to help practice for a test to get into a new school. I began to ask her what she meant by practice. She informed me that her child had been tested so he could get into a private grade school. The testing proctor said his scores showed “scatter.” And the child could try again in two years, and meanwhile he could practice. I looked upon the list of toys. It was an amazing sale, if she purchased it all, the sale would total well over $500.00 dollars. My eyes scanned the list again and I began to grow concerned. This wasn’t a prep list for the child of an over-achieving helicopter parent.

This was a very specific list.

Then I began to ask questions. “When your child was small did he spin wheels?” She nodded her head. “Did he talk early or was it a little later?“ “Later,” she said.

“Did he or does he still have an interest in just one topic like trains, insects or dinosaurs?”

She smiled at me and nervously nodded, “Yes! He loves trains and talks about them all the time. He has for years and he has every Thomas the Tank Engine train ever made.”

I looked down at the list again, took a deep breath and then looked into her eyes. I looked into eyes that seemed frozen in a moment, balanced on a tipping point. Her eyes were brimming with emotion and the tears were held at bay because I had not asked the final question.

“Do you think your child might have autism?”

Then the floodgates flooded opened, and she began to cry. “Oh, I do. I do, “she sobbed. “But no one ever says it. What will we do?” I took her hand and told her I understood.

I did not sell a lot of product that day, but that was not important. It was more important to help this lovely woman, and to have the hard conversation that she had been denied.

The other day I tweeted “The problem with medicine is not that is run like a business, but that it run like a bad business.”

When I began medical advocacy, I began it with the same sense of outrage as Alex Fair before he created FairCareMD. I painted about how Fred was treated because he was treated so poorly. What good business would treat customers so?

If you walk into Child’s Play, within moments you are greeted. If you do not immediately ask for help and receive guidance, you will subsequently be asked by every other staff member if you would like help or if you are finding things alright. We will guide you through the entire store showing age appropriate choices with honesty and candor. We will wrap your presents at no charge and help you carry your large purchases to your car.

Juxtapose 12 years of that kind of service, to our eleven weeks hospitalized.

Imagine if you will the nice lady from the toy store waiting at a nursing counter begging for a thermometer for her feverish husband and being denied. Imagine a clerk that had maintained and helped install a point of sale systems begging for access to the electronic medical record. Visualize my surprise at being mistaken for a new staff person by the ambulance transport crew as they picked up my husband from the rehab facility. I had greeted them at the door, guided them to my husband’s room and helped with the body lift. They were so happy I had been “hired.” They had never been greeted before or even made eye contact with the front desk staff, without waiting a considerable time.

I am glad I get a chance to work at Child’s Play this Christmas season. It reminds me all the more of that the high bar I have set within the world medicine is attainable.

The MRI

2011-11-26T06:35:00.000-08:00

Not long ago Tobias asked to join The Walking Gallery. You might know him from twitter as @tobiasgilk or from his blog: MRI Metal Detector Blog. Tobias is Tobias Gilk, President & MRI Safety Director, Mednovus, Inc. He wanted a jacket focused on MRI safety. And I read quite a bit about the topic before deciding on the image for this jacket. I saw picture after horrific picture of metallic items propelled into an MRI chambers. I read about the very sad story of a six year-old child named Michael Colombini who died in 2001 due to an oxygen canister that flew out of the hands of an anesthesiologist into the MRI chamber. The tank hit Michael’s face and head creating fatal wounds.

I thought of painting these things but the horror of the situation seemed too much. I was concerned that viewers would focus on the flying object rather than the systems failure that led to the event. So I decided to focus on our own MRI story for Tobias’s jacket.

This is his jacket: “The MRI.”

A tale of two MRI experiences:

The Olney MRI

In the spring of 2009, Fred went week after week to the doctor because of pain. He was prescribed multiple pain medications. In mid March of 2009, Fred, I and the children went to a local ER to find out exactly why he was suffering unbelievable pain for the past eight weeks. After waiting three hours in chairs a staff person told us that the MRI and CAT scans were overbooked and they would not be able to anything other than X-rays that night. They sent us home with more pain medication and told us to see Fred’s regular doctor during the week.

We went to the doctor and she asked if Fred was depressed. I told him of course he was depressed due to extreme pain. Then I demanded an MRI. Fred had been seeing her for eight weeks and she had no clear idea of what was causing his pain. I also asked for a referral to a MRI facility that would see him that week and that the MRI machine should be an open design due to Fred’s extreme claustrophobia. In the small town of Olney Maryland they had such a facility. Fred drove there and had the test done. He said the facility and staff were very nice and helped keep him calm during the experience. They gave him the results on a CD and he gave the CD to his doctor.

She called four days later and referred us to an oncologist. Fred never heard from his primary doctor again.

The MRI after hospitalization: one of the worst days of our life.

On the morning of this day, I dressed nicely in one of my Church outfits and went to the hospital early. I was supposed to see Fred’s oncologist. A few days before the doctor had called me little Miss A-type personality because of my questions about Fred’s care, diagnosis and treatment. He told Fred if I had questions to see him in his office hours. I did. The oncologist never closed the door, he never stopped taking phone calls, and he never spun the computer screen around so I could read the record. It was a horrible moment and I painted about it in the artwork called “Office Hours.”

I left the consultation went back to Fred’s room and he was missing. The nurses said he had just been wheeled down for an MRI. I found the MRI suite and the tech said I could wait with him until it was time for the test. Fred was very worried. He did not like tight closed spaces and this would be a long MRI experience. I drew my hand across his furrowed brow to soothe his troubled mind. He was hot to the touch. I asked the tech for a thermometer. The MRI tech said they did not have such tools in here. I left Fred’s side and went to the oncology ward and asked if someone could take his temperature, and failing that, could I borrow a thermometer and take his temp myself. The nurses said they were too busy and there were no thermometers to spare.

I went back to Fred. He was hot and distraught. I managed to get him some ice water to drink. At this point the MRI tech grew concerned that Fred would not provide a good image if he did not calm down. I offered to go in with him to soothe him with my voice and presence. The tech said we do not allow visitors in during the test. She called a nurse down from oncology to administer a second dose of ativan. The nurse did not bring a thermometer though she did remark he was warm. She shot him with another dose of the anti-anxiety medication (my aunt Minnie, a retired ICU nurse later told me she would only give such a high level of ativan to a patient who actively violent prior to applying restraints.)

The tech wheeled Fred in and I told her I would be waiting right outside when she needed me. I waited for 15 minutes before the tech came out. She said she would not be able to do the test if Fred did not calm down. I followed her into the room. She told me to take off my ring and watch. I went over to hold Fred’s feet. I began to shout soothing words over the railroad train roar of the MRI. Within moments my Visitor ID tag tore off my blouse and shot across the room toward the MRI chamber. There it was lost. I had no idea how powerful the magnet was and could not grab the tag before it soared out of reach.

I worried about it for a moment and then went back to the more pressing task of calming Fred. I yelled my love and endearments to Fred for over an hour. By the end I could barely speak and it was hard to hear as I was not offered ear plugs for the noise. But Fred got through the MRI and I had helped to calm him.

After the test, the tech paged a nurse again. Fred was very hot and his temperature was over 101 degrees. The nurse quickly tried to get approval for Tylenol while Fred was wheeled upstairs. Between the fever and the double dose of ativan Fred was altered in his behavior for the next 48 hours. He would not remember that any events or the visits from friends that happened for the next two days.

After diagnosis Fred only lived for 84 days.

48 hours lost may not seem like a big deal, but it is if you only have weeks left to live.

So I painted our experience on a jacket Tobias. A flying visitors pass my not have the visual horror of a crushed bed or a wheel chair imbedded in an MRI chamber, but it represents our personal horror. It represents the horror of being relegated to the role of visitor in your own life. Fred did not need two doses of ativan, he needed his wife at his side. And I cannot help but wonder if things would have turned out differently if Michael had his parents with him when he needed more oxygen.

Engage With Grace

2011-11-21T22:18:00.000-08:00

I don’t know about you, but I love those promotional items I pick up at conferences. I think it is really cool that my five-year old has a Health 2.0 water bottle and that my 13 year-old has a Cerner backpack. I carry my Disposable Film Festival messenger back on every trip and I wear my Practice Fusion t-shirt all over DC.

Yes, I love swag.

It gives me little happy chills to wash my brushes in my Microsoft Healthvault water bottle and my favorite re-useable shopping bag is from Kaiser Permanente. I know companies give us these things to remind us of their products as we live our daily life. Perhaps, I love them because I spent 16 years working in retail. I know the careful consideration that businesses take in choosing which items they shall adorn with their logo or message. And I rejoice in the wonderful conversations I have with people about healthcare just because of all the logos and conference detritus in my life. It is sort of like a wearing a sports logo, but you are self-identifying as a fan in a far more obscure genre.

My favorite piece of promotional merchandise is my wallet. I have carried it with me everywhere for two years and five months. It is very special.

The nice folks at Newman’s Funeral Home in Grantsville, Maryland gave it to me after Fred’s funeral. Did you know Funeral homes had swag? I didn’t know. I didn’t know a lot about the process of dying. It is not something we talk about very much in our daily life.

That is a shame.

This month is Thanksgiving and I will pull out my wallet and buy all the fixings for a Thanksgiving meal. And I will be standing at checkout thinking of end of life care. I will roll my cart down busy isles whilst considering the wishes of my loved ones. This is very special month for this is the time we congregate with family and have a chance to Engage with Grace.

I have written before about the amazing Alex Drane. She founded a company called Eliza. In the summer of 2008, Matthew Holt of Health 2.0 and Alex came up with the idea for Engage with Grace after discussing the fact that most people do not share their end-of life wishes with their family. The Engage with Grace project revolves around the One Slide. This is slide that can be included in a slide set and has five questions about end of life care.

These are the questions:

1 On a scale of 1 to 5, where do you fall on this continuum?

1= let me die without intervention 2 3 4 5= don’t give up on me no matter what, try any proven and unproven intervention possible

2. If there were a choice, would you prefer to die... at home or in a hospital?

3. Could a loved one correctly describe how you'd like to be treated in the case of a terminal illness?

4. Is there someone you trust whom you've appointed to advocate on your behalf when the time is near?

5. Have you completed any of the following: written a living will, appointed a healthcare power of attorney, or completed an advanced directive?

I asked Rosemary Gibson, author of The Treatment Trap and an authority on palliative care policy, “How do we prepare to ask such questions?” She told me such questions were part of the reason she wrote her book The Treatment Trap. She encourages readers to ask questions about potential treatment options early in their medical care so they are empowered by this experience to ask the big questions later. So many people when they are diagnosed with a terminal disease find themselves on a scary rollercoaster of treatments not of their choosing.

She recommends starting with simple questions to gauge our awareness of self and build toward these harder ones. I know that a life of research and asking questions of doctors helped me to help Fred through his cancer journey. The research I did as a mother led me to question the need for Pitocin in a natural delivery. It led me to question the need for a tonsillectomy if both parents genetically had large tonsils. These simple preparatory questions helped me be brave for the very hard questions to come. I am advocating that you begin to ask questions about your care, that you begin to take ownership of your life and of your death.

And why not start this Thanksgiving?

Why not start to ask these questions surrounded by love and light and family? Please do not wait to ask these questions as Fred and I did. We filled out Fred’s Advance Directive at the first hospital. We did it all alone. Tears ran down my face as I read question after question to my newly diagnosed husband. We had never even spoke of this in theory; we had never practiced.

There was no one to help us.

Weeks later before going into hospice, we had to answer the questions again. Again I sat alone with my husband, his eyes as trusting as a child, while I explained the DNR forms that must be signed before transport. I stood steadfast at side supporting his decisions and I was thankful the family united around him with the goal of a good and peaceful death.

I did not know at the time that it could be so much worse, that this process can be fraught with more despair and anguish. I did not know it tears some families apart when they fight about their loved ones final wishes. I did not know some wives and husbands disagree with mothers and fathers. I did know that providers could ignore an advance directive if one the immediate family members fight against it.

And this is why you need to talk about this on Thanksgiving. You need to talk about this when every family member is there, so everyone is aware of your intent and decision. So every one can support your choice when the time comes.

I carry a funeral home wallet because the folks at Newman’s were kind. They greeted my Father-in-law Fred Sr. and I, with soft words and acknowledged our grief and confusion. They did not leave us alone to pick out a casket by ourselves. They helped us fill out paper work and answered every question with dignity and respect.

I carry this wallet with me, and death becomes part of life. And every once in a while someone remarks upon my wallet and I can ask, “Have you heard of Engage with Grace?”

The Sycamore Tree

2011-11-20T07:40:00.001-08:00

This week Alex Albin was on my mind. I knew I was rapidly approaching the one hundredth jacket in the Walking Gallery and I wanted that jacket to be Alex’s. Alex had wanted to be part of the Washington, DC Gallery on June 7^th, 2011 but she could not.

Then Alex planned to attend Health 2.0 in San Francisco in September, but instead she had to fly to Colorado to undergo her 17^th Surgery.

Alex very much believes in compassionate and informed patient-centered care, as she is very much a patient. So this is Alex or @msaxolotl as I have known her on Twitter. I love her Twitter handle. @msaxolotl. I think it is the name for a dinosaur or some ancient flying reptile that once gracefully soared above us but now is lost in the dust of time.

Doesn’t she look happy? I loved her twitter picture at first sight. I marveled at the juxtaposition of soft pliant flesh resting on curvaceous weathered wood. Yes, I loved the picture, but I had no idea how much the old tree and Alex had in common. For Alex has a condition that mimics “dry rot”: avascular necrosis or osteonecrosis.

She was diagnosed with MS in 1994 after a bad kidney infection and odd neurological symptoms. She had a paralyzed bladder and would lose her balance. She was treated with steroids. Eventually she began to use a wheel chair to get around and could barely hold a cup in her hand.

She was only 34 years old.

She spent the next three years trying to regain control of her body and her life and was prescribed beta Interferon at the cost of $1,500.00 per month.

Then in 1997, the bone pain started. She saw a Neurologist and an orthopedic surgeon on the same day. The neurologist had some good news; she did not have MS. But her orthopedic surgeon said, “Well, you have this condition in both hips called Osteonecrosis… where the bone dies.” This condition will plague Alex for the rest of her life. To further add insult to injury this disease is most likely a direct result of the blast of steroids.

Alex has now completed 17 orthopedic surgeries on hips, knees, shoulder, elbow and wrists in order to save her joints.

Due to the honest and frank appraisal of a local doctor, Alex was informed she should see Dr. Steadman in Colorado. She has had most of her surgeries there, but has trekked all over the United States to get appropriate care.

Alex is an e-patient: which she defines as engaged, electronic and empowered. She has used every tool in her arsenal to fight this disease. But she is a very special e-patient because she does this for us all. She is a patient who speaks for other patients standing on the firm foundation of her patient experience.

I see her frequent tweets and questions posted on the high level threads of thought at the Society for Participatory Medicine. And I am so very thankful that Alex is part of this movement.

So this is Alex’s Jacket: “The Sycamore Tree.”

In this painting lovely Alex sits perched within the branches, a loving smile lights up her face. She is dressed in a red little red cocktail dress, and every eye is drawn toward her face and her body. But how that lovely body suffers, for Alex’s limbs are pinned by the tree. At hip, shoulder and wrist living shafts of wood pierce her flesh and reach for the sky.

But why is she perched within a sycamore tree?

She is so perched because Thursday was a very important day for HIT and consumer engagement in Washington, DC.

I had received several invitations to register for the ONC meeting available to join by webcast November 17, 2011: ONC Grantee and Stakeholder Summit. I was so thankful that I had the opportunity to attend the meeting in such a way.

David Blumenthal began the day with opening remarks. Then at 9:00am Farzad Mostashari, MD, ScM, National Coordinator for Health Information Technology, Office of the National Coordinator for Health Information Technology (ONC), HHS delivered a speech. Farzad was brilliant and I am continually amazed at how his passionate voice has grown since becoming national coordinator. I sat riveted tweeting the speech for the entire 45 minutes.

Then at 9:45: nothing. The feed went silent as people gathered for a break.

I despaired. If only I could be there in person. Then I glanced up to the top of the web page and saw those magical words: “All Thursday sessions are open to the public.” I changed out of my painting cloths and into conference attire and headed downtown.

As I traveled I sang under my breath a song from long ago days of Sunday school.

“Zacchaeus was a wee little man

And a wee little man was he 

He climbed up in a sycamore tree 

For the Lord he wanted to see

And as the Savior passed that way 

He looked up in that tree 

And He said, “Zacchaeus, you come down from there!  

For I’m going to your house today

For I’m going to your house to stay.”

I sang because I was feeling rather like Zacchaeus, unable to get a clear view and willing to make a spectacle of myself just to be near the amazing people who spoke with such passion about medical records and patient access. And as I sang I thought of Alex far away, unable to attend event after event due to the constraints of a body filled with dying bone.

When I arrived at the event, I went straight to registration, I explained I had been watching online and noticed it was open to the public so I had come in person instead. The lovely ONC staffer explained the main ballroom was registered to a point of near capacity.

Thus… no non-essential people had been invited.

That rang a bit in my ears. Non-essential. I looked around for other patient speakers who were in attendance and did not see them. I saw a lot of venders, providers, governmental employees, and public relations folk from Ketchum, but I did not see a lot of patients.

So, I wandered over to the Grantee Consumer e-Health: “Take the Pledge” booth. My friend Cindy Throop was sitting there. She was manning the station as a favor but would have to leave soon and asked if I would like to help. So for the next few hours I asked every passerby from data holding organizations to sign an online pledge stating: “We pledge to make it easier for individuals and their caregivers to have secure, timely, and electronic access to their health information. We further encourage individuals to use this information to improve their health and their care.” Or if they were non-data holders the pledge stated: “We pledge to engage and empower individuals to be partners in their health through information technology.”

During that time I met a lot of great people and quite a few took the pledge.

I saw other Walkers from the Walking Gallery. Ted Eytan, MD from Kaiser was wearing his jacket, as was Lygeia Ricciardi, Senior Policy Advisor for Consumer e-Health, ONC. I also met in person an amazing Twitter voice @BangorBeacon aka Andrea Littlefield.

Later in the afternoon someone came over who had taken the pledge and wanted to know next steps. I said the ONC would be contacting people shortly, but there was nothing stopping them from actively applying the oath within their organizations and personal life.

I explained I may be just an artist and patient advocate, but I was already living the pledge.

Hence, there is a Sycamore that upholds Alex in this painting.

This is the lowly fig Sycamore. The fruit of this tree historically was fed to only pigs and the poor. It wasn’t fit for climbing. But sometimes when you so desperately want to see, desperately want to help, you are willing to suffer extreme discomfort and public ridicule just to view the promise of new tomorrow.

And as I spoke to the grantee, I was no longer frustrated by being considered non-essential in the downtown meeting. For the ONC had done so much to include thousands of patients in the online webcast and Twitter stream whilst those patients could sit in the privacy of their homes. They included people who, like Alex, are recovering from surgery so far away.

They included people who could not climb trees.

It seemed as though the ONC folks were singing to me through a pledge. “I am coming to your house today! I am coming to your house to stay!”

I am sad that Alex could not walk with the Gallery in June or in September. I am sad she may not walk in months to come. But the Gallery has deep roots, and we shall walk for her. Every time one of the Gallery members walk, they represent us all. What a mighty weight that is. We wear tragedy upon our backs. We may bend and stoop with the weight of sorrow, but we shall bear it together.

Do you know what a Sycamore is? It is a Planetree: a tree that Hippocrates sat beneath, the tree that Zacchaeus climbed upon and a symbol of another way of practicing medicine.

Welcome, Alex on your tree, Welcome to The Walking Gallery.

Midnight in the Courtyard of Zweena

2011-11-18T21:56:00.000-08:00

I heard of Zweena over a year ago. (It is a rather novel concept in the world of the PHR: personal health record.) But I recently became more acquainted with its founder and CEO John Phelan. We talked briefly at the Microsoft Connected Health Event in the spring. That was months before the Walking Gallery was a concept let alone a reality. I ran into him again at Health 2.0 San Francisco and he was open and talkative and very excited about patient access to the electronic medical record.

I liked that he had no fear of talking to an artist painting in the middle of a crowded room filled with 1,000 HIT enthusiasts. He told me a little about himself and I invited John to join the Gallery.

John, like many members of the Gallery, had to do something to change the method of patient care once his life collided with this dysfunctional system. John watched his mother die at the age of 63 from breast cancer. She had put off getting her mammogram and the delay in diagnosis killed her.

He watched his five year-old son suffer from pneumonia in the ICU for a week. He guided his Father through transfer after transfer in hospital settings. And all along he saw how important it was to have access to the medical record. He founded Zweena out the angst of that frustration.

This is John’s Jacket: Midnight in the Courtyard of Zweena.

This painting is set within a Moroccan courtyard because John spent two years in Morocco when he was in the Peace Corp. He spent those two years running a home for boys with Polio.

In this painting, a concept of John’s Mother stands in an archway wearing a patient gown with her hands clasped before her breasts. Her face is filled with uncertainty about the path to come. She is placed in a doorway between worlds. Half in shadow half in light, she is preparing for her journey.

To her right a small boy stands trying to repress the racking cough of pneumonia. He seems so small and thin.

Slightly to the left sits John upon the courtyard fountain. He is trying to scoop up the water/data with his bare hands whilst his mind is fraught with worry.

He needs help.

Under the shadowed lip of the fountain one word is written in Arabic: Beautiful = Zweena.

If you walk down the outside street, the house that holds this courtyard is plain to the public eye. No one would know about the beautiful garden courtyard within. These courtyards are an important part of Moroccan architecture. This is the space that opens to the public and allows the private family rooms to remain pure without trespass.

And that is what Zweena is.

It is a PHR that gathers your records for you. It is the space that allows public and private to meet in peaceful understanding and that is beautiful.

Living Wage

2011-11-18T11:19:00.000-08:00

When I was a very little girl, I had a favorite book. It was called Best Loved Nursery Rhymes and Songs published by Parent’s Magazine in 1973. It is filled with a cacophony of artistic styles and classic, if somewhat terrifying, nursery rhymes. I know this book has affected my style as an artist.

I loved the book so much that I even drew one of my first pictures on the inside cover.

This is “Inside the Beauty Shop” by Regina at four years of age.

Yes, I loved this book and it informed me as an artist and as a writer. It also reinforced some primal fears at a very young age, because I am scared of some of these pictures to this day.

And one of those disturbing pictures is the Crooked Man.

I worry for the man. How will he live, how will he walk the crooked mile? And perhaps I should ask Brian.

Do you know Brian Ahier?

He is a Health IT evangelist. I first knew him as just @ahier on twitter. I began following him on June 1, 2009 sixteen days before Fred died. We commented back and forth on Facebook and twitter, discussing Health Reform, transparency and Meaningful Use throughout the next year. On June 13^th 2010, I had the honor to present the patient view on Meaningful Use at the announcement of the final rule. The Department of Health and Human Services posted the entire 53 minutes of the announcement on to its YouTube channel. But Brian was so kind that he parsed out my 5-minute speech and posted it on his account.

A few months later on October 18, 2010, I met Brian in person.

We were both invited by OA systems to give a speech in Chicago on Meaningful Use. He gave an incredibly good speech before the crowd. I especially enjoyed the Q&A session as we bounced the questions back and forth between us.

Almost a year later I would see Brian again. This time I would see him on his home turf in Oregon at AIM 2011: Innovating for Healthy Oregonians. Once again he was an amazing speaker. And after his speech we had a chance to talk and he decided to join The Walking Gallery. As he handed me his jacket he told me his personal patient story.

This is Brian’s jacket a “Living Wage.”

See, I know Brian the amazing thought leader on HIT. But there is another Brian.

There is a Brian who had to watch his mother die at the age of 61. He and his siblings had to watch bungled transitions of care, had to try to parse out the real intent of a living will sparse on detail and had to do that without destroying the heartstrings of a family. He watched all the problems that could happen within the system medicine be played out on his mother, and 15 years later he is still seeing the same problems.

So this is the Brian that has watched his mother suffer and it is also a Brian that suffers too.

Brian has Psoriatic arthritis. It manifests with symptoms of painful swollen joints and the sausage-like swelling of fingers and toes. Brian is very fortunate; he has a job that provides health insurance that covers the expensive drugs needed to keep his disease in check.

I cannot image a world with Brian’s twitter voice silenced, because of fingers so swollen and painful that he can no longer type.

But such a world could happen.

Brian shared with me a realization. He met a man, a lovely man, with children. And this crooked man had swollen and twisted fingers and he sat in a wheel chair because of extreme pain. Then Brian found out why. The man had Psoriatic Arthritis just like Brian, but he could not afford the medication Brian took.

Brian translates code and arcane legislation into workable language. He reads hundreds of pages about Meaningful Use and reflects that to us in a code we can understand. We are blessed that he has this talent, because with it he pays for the medications that make his life livable.

Brian has a living wage, and with it, Brian is using the days of his life to better us all.

The Sharp Experience

2011-11-16T08:05:00.000-08:00

Fred and I were married in 1993. I was 21 and he was 23. We spent less than $1,000 on the event. All the guys in the wedding party wore suits and all the girls wore nice dresses. Our flowers were poinsettias. Fred and I both sold our personal comic book collections to pay for the rings and the invitations. It was a relatively small affair, but very nice with as much pageantry as we could afford. After all, Fred and I had both been theatre majors, so we knew how to put on a show.

On the morning of December 26^th we attended a Church service followed by a wedding rehearsal. I was scurrying around making sure everything was just so, when my quiet mother took me aside and said, “Regina this is a wedding, not a show.”

It took me aback. There were things to do, steps to take. I was in a hurry, but my mother stood before me. She was wearing a lovely green dress with her hair carefully curled. She looked at me with her serious brown eyes, and placed her hand upon my arm. “Slow down, and remember why you are doing this.”

It was a wedding and not a show.

Some folks forget that there are moments in our life that are meant to be sacred. A wedding is such a time, and so is a funeral. These are times we yearn for a sense of the greater good and spectacle exists only to support the sacred moment.

I was reminded of this recently at a magnificent affair called “Greater Good: The 2011 Sharp Experience All Staff Assembly.” It was held on October 11-12, 2011 and approximately 14,000 Sharp Healthcare Staff attended the event.

I have been to quite a few events at hospitals and many staff assemblies, but I have never seen an event quite like the one created by Sharp Healthcare. The great hall was set with seating for 5,000. Ushers with flashlights helped everyone to their seats. The Stage had three performance platforms and multiple lighting designs. They even erected a small stage for my easel within the audience.

The staff of Sharp Healthcare created this amazing experience with Sonia Rhodes, Chief Experience Officer, coordinating this massive event and CEO Mike Murphy acting as Master of Ceremonies. You see, everywhere I looked the show planners and staff were helping and guiding all of those who attended the event. They even bused the staff to the convention center from miles away. On this day the guides were ushers and clean up crew and on the next day they would return to their regular jobs as nurses and medical providers. The attendees were not just the CEO’s, CMIO’s and Board Members, they were also the janitors, technicians and cafeteria staff.

Sharp Healthcare invites everyone to the table. Then they show them where their seat is and ask if they can help in any other way.

They even assigned me a “handler.” If you are often a speaker, you might have been helped by one these lovely people in your career. They are often a young assistant or intern assigned the task of making sure the speaker has something to drink and shows up at the speaker ready room on time. My handler was a very nice man named Josh McCabe. Josh got me Starbucks coffee and refilled the water for my brushes.

Josh is also the lead clinical care nurse in the Sharp Chula Vista ED.

He is one of the best nurses in the Sharp system and he did his part in the Sharp experience by helping an artist perform three speeches and paint three paintings.

So three times in two days I spoke before 4,000 attendees of life and love, of Fred and medical records and explained the patient story is a great good thing.

When I was not speaking I was painting, and the first of those paintings was “1,000 Cranes.”

In this painting a patient rises out of an excavation crater, her arms are supported by the six pillars of quality at Sharp. Construction cranes surround her, uplifting her and providing “bags of goodness.” This represents the 14,000 bags that the staff of Sharp filled with gifts and gave to people of the community, be they patients or soldiers.

In the air above her, paper cranes fly, rejoicing in her full recovery. The patients and families of Sharp who created hundreds of cranes in support those who are ill inspired this image.

The second painting is “My Sharp.”

This painting focused on an aspect of care at Sharp Coronado Hospital. Cindy S. Murphy, MPH, Director, Customer Operations Administration at Sharp Healthcare, explained the open records approach that Sharp Coronado has embraced. Using the lessons they have learned from the Planetree model they now involve the patients during shift change hand off and explain the entries in the electronic medical record to the patient. After answering any patient questions they leave a copy of the record with the patient. The patient can amend the record with up to 250 words and that information is logged into the patients EMR.

I stood under little paper lanterns at a small reception and listened to Cindy describe a hospital that was actively treating patients with dignity, respect and open access. I wanted to cry for joy, but instead I painted this.

Three members of the Sharp staff open the book that is my story, my record, my Sharp. And from this record patients coast down playground slides in a life-long game of chutes and ladders made all the more joyful by they way they are being treated.

The final painting is “The Sharp Dance.”

In this painting two sharp staff members perform a low dip as ballroom dancers. It is beautiful and romantic. It is sacred, just like a wedding.

I asked two volunteers to step up so I could paint them dancing. Lisa (Li) deBeaumont, RTT, CMD, and Manager of Radiation Oncology stepped forward as did Dave Libbett. Dave was walking with a cane, so within this painting his cane has become the staff of Asclepius. He is dressed in his finest as he looks with joy upon the viewer.

Lisa is wearing ballroom red representing passion and all those who live due to the Sharp Experience. Lisa’s back is arched as she completes her dance and her eyes search the heavens. She holds a rose in her lowered hand. And if you look closely you will notice the thorns have pricked her. A drop of blood drips down. She has been pricked because thorns are Sharp.

This is what I saw when I visited Sharp Healthcare. I saw people who worked really hard but loved their jobs. I saw people who might walk with pain, but walked with pride. I saw that, sometimes, it is painful to be Sharp but it is so very worth it.

And I saw people who love to celebrate the wedding, but focus all their energy on the marriage of patient care and provider work to come.

Thank you Sharp Healthcare for that experience, and thank for creating the perfect amount of spectacle to support us in the sacred mission of care.

Kait B. Roe: A Life Unfolding on Three Jackets

2011-11-15T08:26:00.000-08:00

I have spent the last six months explaining a concept called The Walking Gallery. I have asked many people working in health to join this advocacy movement.

And they have.

They have walked in Greece, Australia, Canada, England, Belgium and The United States. Everywhere they walk they are asked about their jackets. Many people wonder how they can become part of the Gallery. A few have asked me how they can “buy” a jacket.

Well, I respond they cannot be purchased with money. Each Jacket represents stories of personal pain and triumph. They depict a soul laid bare upon one’s back. Members of the Gallery wear their tale with such bravery from conference to conference.

No, you cannot buy a jacket painting, but you most definitely pay for it.

This is the tale of Kait B. Roe and her three Jackets.

The first jacket I painted for Kait is entitled Ephphatha.

I was introduced to Kait through our mutual friend Ted Eytan. She has worked for a number of years in patients’ rights in Maine. We met for coffee at Politics and Prose this summer. It was an amazing conversation because Kait focuses on medical records access just as I do, but her emphasis is on Mental Health records.

So in this painting, a circus tent rises. The red striped tent walls seem more like prison bars than pretty muslin. The acrobats on the flying trapeze wear straight jackets.

And I fear for these performers, because without their counter-balancing arms they shall surely fall. One performer has fallen and lies upon the floor trying desperately trying to read the medical record. As her eyes begin trace the words of her record, her straightjacket becomes butterfly wings.

This is what I saw when I spoke with Kait. I named it Ephphatha, for that is what Jesus said to the deaf and dumb: “Be opened.” And as Kait speaks she is opening minds whilst opening records. She is shifting the paradigm of expectations in relation to mental health. She is eloquently speaking out with her words and with her jacket: “We need data access, too.”

The next time I saw Kait, I painted her another jacket.

This painting is called “Good Dog.” It addresses the fact that veterinary care in this nation often is a more patient centered model with better data access. In this painting, a younger Kait holds her beloved pet dog as the text streams by explaining the treatment the pet receives.

“My tummy hurts, I get to go to the vet the same day I call.

Does your Patient Centered Care measure up to MY care in my vet’s office?

My best friend went with me cause I was scared. So glad my pal went along with me, they heard things I missed. I was so worried about the blood tests… But once I got the call… I was a happy dog. Mom is on the phone with the vet… I am okay!

All of us have Patient Centered Care… Do you?”

Kait will be moving to DC soon to dive deeper into patient advocacy. She will have to leave her current pet dog with his other mother. That dog loves the woods of Maine and would not be happy in our concrete jungle. But Kait will miss him so, I am happy she can carry this dog on her back.

Kait is giving up a lot to be a patient advocate. She will give up her dog, her home and her privacy. She will do all of this for others so they will not suffer so. But Kait‘s path toward advocacy began long ago, when Kait lost her mother.

This is Kait’s final jacket: “The Tipping Point.”

In patient advocacy, we all have a tipping point. That point when we can no longer take the outrage and sorrow and we must do something about it. My tipping point was being told access to a medical record would cost 73 cents per page, while my beloved Fred lay dying. But Kait’s tipping point is a laundry basket in a hospital.

Kait was only five years old when her mother died. She died as a result of a heparin overdose. Kait’s mother went into the hospital to deliver her little sister. She only lived for 7 weeks after labor she underwent 8 blood transfusions and spent most of that time in an ICU with no visiting hours for children.

Toward the end an ICU Nurse hid Kait and her older sister in a laundry basket in the hope that seeing the girls would rekindle her will to live.

She died soon thereafter.

All I can see in my mind is a little Kait, as sweet and wonderful as my little son Isaac, a little Kait in a laundry basket with all the weight of her mother’s life in her hands.

And her mother dies, and Kait loses everything.

Kait is a rare member of The Walking Gallery.

She has three jackets, and their price was very dear.

The Man Behind the Camera

2011-11-14T08:49:00.000-08:00

If you are as old as I am, you remember those special days in school: the movie days. The days the teacher would walk to the head of the class and pull a projection screen over the outdated world map. She would roll a squeaking metal cart to the rear of the room. We would watch in awe and amazement as her deft fingers would unreel the spool of film and place it on the carriage. She would turn on the film projector and each dust mote would gleam in the air. Then she would advance the film and that wondrous noise: that pleasing repetitive fftht, fftht, fftht would fill the room.

For the next thirty minutes we would fall into the world of the documentary.

We would learn about big cats on the Savannah, or the division of a cell or the mathematics behind the construction of large buildings. For thirty minutes the room would cease to be a slightly musty space filled with chalk dust, but instead became a theatre. As a child, I would smile in delight on movie days, and be so thankful that the projector worked and the film did not break.

As an adult I thank all the documentarians that have created such delight in others. I am thankful to know a handful of such amazing people. One of those is Matthew Listiak (@MatthewListiak on Twitter) and this is Matthew’s Jacket in the Walking Gallery: “The Whirling Dervish.”

I have known Matthew for almost a year, and for much of that time he was represented by face consisting of only one eye with a shock of red hair behind a camera. He was the quiet one; he scurried between cameras and applied make up before the last shot. He would look at the world with a furrowed brow. He would pick the best light or angle for a shot. He was like many filmmakers I have met, but one thing sets Matthew apart. Matthew not only cares about the subject of his films, he is actively helping make the world of medicine a better place.

Matthew works with TMIT (Texas Medical Institute of Technology) as a Senior Producer. He is intimately involved in the creation of the various quality and safety videos on the SafetyLeaders.org website. He is one member of team creating the patient speakers portal that will go live in December. He was a producer of the documentary Chasing Zero: Winning the War on Healthcare Harm that aired on the Discovery Channel. And is a producer of the upcoming Documentary in the series: Out of the Danger Zone: Winning the War on Healthcare Harm.

And all of these things make Matthew so very special. For I have known filmmakers in my life, and many of them sadly shake their heads when they hear a patient’s tale of woe and sorrow. But that expression of empathy is not followed by a call to action. They do not funnel every bit of time or talent into a campaign to ensure cessation of harm.

But Matthew does.

Here is Matthew. His bright blue eye looks upon the viewer with such depth of caring. His other eye is mechanical: the camera itself, and he is recording. He will ensure change by the active creation of new media.

To the right of this painting are the Whirling Dervishes. These women spin first in meditation. As they spin faster and faster they begin to relate to the divine. Writ upon their skirts are the topics that fill the world of patient centered care. “125 Million people living in chronic illness, disability or functional limitations,” says one quote from the Aligning Forces for Quality Conference. Others skirts are adorned with websites and twitter hashtags. Some of the Dervishes look up as a small child would, some look straight ahead focused on their own internal conversation. And they spin and spin becoming a sort of projector for the media that Mathew creates.

At this point I feel the fright of the child inside me. For I see the film has twisted, and I know it soon shall break and movie day will be undone. We will no longer learn about these amazing things if the projector breaks. If we stay too focused on our own conversations in our own closed medical communities, if we continue to merely spin our wheels and talk in a circular fashion about patient care, we shall fail. We must each exist as a device to propel the story forward. And through ourselves project the light we wish to see in others.

So this is Matthews Jacket.

And this is the website Safetyleaders.org

It is filled with amazing content and media that Matthew has helped create. And if you watch these films you will learn more about patient care and lives will be saved.

The projector only breaks when you fail to use these films as they were intended.

Cost Benefit Analysis

2011-11-10T23:53:00.000-08:00

Yesterday, I had the pleasure of attending several sessions at the Aligning

Forces for Quality: National Meeting in Washington, DC. Upon arriving at The Grand Hyatt, I was greeted with the utmost welcome by Alicia Aebersold and guided to a session hosted by Mike Painter, or as I have known him on twitter for these past few years @paintMD.

The session was entitled Stakeholder Perspectives on Addressing Health Care Costs. I set up my easel while Mike introduced the panel of Speakers: Andrew Webber (National Business Group on Health-Moderator), Kathy Hutcheson (South Central Pennsylvania Alliance), Vince Kerr (United Health Care), Karthik Shyam (AIR), and Barbara Tobias (Cincinnati Alliance). As I was assembling my supplies the lovely Kalpana Ramiah, DrPH, MPH, Principle Project Specialist for Health Policy and research at the American Institutes for Research offered to help me in any way and proceeding to get me water for my brushes.

And so I began painting this piece “Cost Benefit Analysis.”

I started painting the lovely swooshes of color that Aligning Forces used on many of its session handouts. I listened to Vince Kerr take us to a fictional other world where diseases affecting all newborns and valedictorians were overcome by this society’s concentrated effort. And then he brought us back to our world with the cold fact that all income increases in the past decades were wiped out by health care costs.

So, I painted deep space and the constellation that was most apparent is symbolic of the dollar sign. In the extreme right foreground of the painting a green planet revolves with its surface deeply scored by such monetary symbols. Here our valedictorian rests and looks upon the viewer. He is unwell, yet graduating. And if not for health care reform his insurance coverage would lapse upon re-entry into a jobless economy. The valedictorian throws a babe in the air in that timeless favorite game of childhood. The baby smiles at the viewer, blissfully unaware that without a change of course in the arc of spending, there will be no healthcare dollars left for his adult life.

I then painted that arc as a rocket spiraling ever higher. The conversation on the panel then turned to patients and their part in this mess. The lack of transparency in pricing and use of EOB forms that read more like hieroglyphs than billing documents was remarked upon. Patients could compare and choose a dishwasher by quality and price but not their healthcare choices. Vince continued on, listing inappropriate procedures and wrongly prescribed drugs that waste money and unfortunately lives as well.

Patient awareness of true cost was considered a key element in creating future payment models. And that means more than just being invited to the table, that means patients must know the plan in its entirety. Otherwise, we are only a pawns within a larger game. At this point the health care spending rocket gained a rider. An old cowboy sits upon the rocket straddling it like a rodeo bull as he tries to understand a medical billing record with the aid of a magnifying glass. He fails in the attempt as the rocket spirals ever onward. Some of you might recognize this homage to another piece of work.

Dr. Strangelove anyone?

The image of Major Kong riding a nuclear bomb to his own destruction is rather iconic in film circles. Do you know character actor played Slim Pickens that role? Further, did you also know that the director Stanly Kubrick only let Slim see his part of the script and Slim played the role “straight” not knowing he was in a comedy? When Slim arrived in England to film in 1962 he was wearing a cowboy hat and western clothes and the cast and crew marveled that he had come in costume.

They had no idea that Slim wore his western cloths as regular attire.

Slim’s character is a determined patriot who fulfills his mission regardless of many system errors and dies in the attempt, with no knowledge that he has set off a series of events that will insure a complete destruction of the world.

I could not think of no better representation of patients in the current world of healthcare. We are often the straight players in this farce, given only enough information to launch the rocket but not to steer its course.

Finally, I heard a phase that I have come to revile. “Patients need more skin in the game.” So I painted a woman completely bare. Her body has become a part of a Monopoly game as she prepares to roll the die and land on chance. In one hand she holds the die in the other the play money from the Monopoly game. You know the gold color bills, greens, the blues, the ones you hoard trying to win the game. She will pay them out having no idea how much she will have to spend or how effective her treatment is within a national aggregate.

How could she possibly have more skin in the game? She is the one laid bare upon the examination table.

After the Health Care Cost Session, I saw the luncheon plenary by ePatient Dave. DeBronkart. It was entitled “Let Patients Help: Engaging the Ultimate Stakeholder. As usual Dave was amazing. His speech took the audience on a rollercoaster ride of information, facts and figures and the emotional reality of the patient experience. I quoted his phrase within the painting: “Patient is not a third person word.”

And while listening to his tale I painted one last constellation in the sky. This was the patient. He stands with his hospital gown gaping open, his face concerned as he offers you his hand.

He has nothing left. His hair is gone, his clothes removed. Yet still he offers all he has to make healthcare better.

All any of us have in the end, ourselves alone.

Can you catch Activism?

2011-11-08T07:44:00.000-08:00

A few weeks ago, Alex Priest contacted me via email about the Benevolent Media Festival in DC. As described on their site: “The Benevolent Media Festival is a celebration of storytelling and design for good. This first-of-its-kind, all-volunteer initiative focuses on people, organizations and projects that compel audiences to care about a cause, take action on an issue, or promote a point of view through strategic and inspiring multimedia.”

Alex introduced me to Erica Schlaikjer, one of the event organizers. She, in turn, introduced my work to Scott Thompson. Scott works at an NGO focusing on AIDS outreach and he thought it would be great if we could do some art to spread HIV awareness and benefit the Whitman-Walker Clinic at Logan Circle. I mentioned my street art advocacy, I suggested I set up my easel and paint about HIV in the District. At first we considered painting by Whitman-Walker. But as this is a citywide problem, I realized I could paint anywhere. But what physical location could represent the pervasive presence of HIV in DC?

Starbucks.

Don’t get me wrong; as my friend Ted Eytan can tell you, I love Starbucks. But as we often note in our pop-culture from Shrek 2 to the new song by John Wesley Harding, Starbucks seems to be everywhere. I could think of no better analogy than painting a Starbucks to represent the HIV Rate in DC.

And I painted this Starbucks.

It is my neighborhood Starbucks. I have walked by this location for the past 17 years. I have ordered many Grande Lattes there. I have often depended on the clock above to urge me on my way to work.

So, yesterday I set up my easel and painted this painting: “3.2%.”

In this painting, I depicted a version of the Starbucks I saw before me. There are no faces or people in this work. If you have seen my work before, you will understand how atypical this is. You see I paint people. Buildings are just props and symbols to support the patient story. But what person wants to tell this story? Who wants their name and face attached to the story of a possibly fatal communicable disease?

Painting this was a very eye-opening experience for me. I paint about disease constantly. I paint about suffering patients everyday. This became my life mission after my husband died of kidney cancer. I painted on this very street for three months in 2009 about our tragic family journey in the world of medicine. The people, who stopped to talk with me during that time, embraced the subject and talked wholeheartedly about their own life experience as patients. Most of them related very personally to a diagnosis of cancer.

Talking about HIV and AIDS in relation to art was very different. People were less open. Often taking a step back, literally, when I began to discuss the genus of the painting. I was astounded. What did they think they could catch from standing close? Was this response a manifestation of the fear of HIV or of activism itself?

I paint because I care. I want to change things. I want to help patients lead happier and healthier lives. The folks at the Benevolent Media Festival think the same. Hence they promote and create great media in its many novel forms to address tough subjects in DC.

Perhaps that is why I angered a few folks. I was supposed to be safe. I was supposed to only be an artist painting a pretty picture. And instead I represented a conversation about a very dangerous disease. As one man stated after seeing my work, “That is not art, that is propaganda.” Really? If he was referring to a definition of art as influencing an audience. Well, then yes I guess it is propaganda. For that matter so is every piece of art in existence accept a few neural choices that adorn hotel rooms. But if he is suggesting I am lying by omission or presenting biased facts, I think he must be wrong.

Last night I presented this work to a group assembled at Artfully Chocolate at 1529 14^th Street NW. I brought my little son Isaac with me. We had chocolate to drink and were surrounded by loving strangers: loving strangers who came to talk about HIV. That was a very different a reception than my actively painting on site in ward 3.

You see the people who talked pleasantly to me whilst painting knew me. They knew me as a pre-k art teacher, they knew me as a store clerk and they knew me as a mom. And because of that they were willing to listen to hard facts and scary data.

This painting has a marquee that states: “Las Vegas may have the most Starbucks in the US, but DC has the highest rate of HIV.” Above that statement is the clock I have depended on for 17 years. That clock now says something more important than time or temp. It says 3.2% because 3.2% of District residents over the age of 12 have HIV. Washington DC’s HIV rate is higher than most of West Africa.

To the left of the painting is a Twitter hashtag: #occupyhealthcare. And that is what I am asking all of you to do. Stand up, paint, write or speak, but do it publically. Tell the patient story, be it about cancer or HIV. Occupy places or occupy art forms.

We might frighten a few folks in the attempt, but those who know us could be changed forever by a contagion called compassion.

I Grok In Fullness

2011-11-05T23:08:00.000-07:00

On the night of September 17^th2011, I planed to pull an all-nighter in New York, painting in a silent library. My friend Manny Hernandez had asked me to join with several other artists to paint about Non Communicable Diseases during the UN Summit.

I met Manny during a Health 2.0 event over a year ago and we recited poetry about sickness and death over cups of coffee and conference snacks. He would tell me of his advocacy in the diabetes community, and months later I would ask him to join The Walking Gallery.

He would join us in spirit but could not leave the west coast to attend our event. A friend of mine named Pete Wright wore the jacket as a proxy on June 7^th at the KP Center.

The Jacket was called, “Acceptance.”

This jacket is a close up and personal view of a forest. The trees camouflage an insulin shot. And a litany is etched upon the bark of those trees: “Initial Diagnosis: Pain, Anger Denial.” This is followed by “Healing, Learning, and Fighting.” Then finally we reach “Acceptance, Acceptance, Acceptance….“

It is a simple jacket design that describes an amazingly painful journey.

So, I would paint for this poetic soul. I began at 11: 17pm after a full day of work running a Street Fair in DC followed by a long train ride to New York. A friend of my named Mary Welch Higgins, who is an artist member of The Walking Gallery, was painting as well and so were a few other artists. The night wore on. Most of the artists abandoned their canvases and went to bed. Manny’s wife Andreina and I stayed to paint.

This painting addresses two diseases that have deeply touched my life: Cancer and Diabetes. I lost my husband to Cancer and my father died after going blind from poorly maintained diabetes. I am acutely aware of the stages of grief that lead to acceptance in these diseases.

And so I painted this: “I Grok in Fullness.”

In this painting the background is bright and fiery, red swirls of color spool into kidney shapes. An eight-foot tall Goddess or angel is poised as if to leapt from the canvas. Her head is thrust back and her countenance stern as her eyes pierce the heavens.

My husband Fred dangles from her right arm. He is as loose and flexible as a small child. We can see beyond his gown into a spine wrecked with bone metastasis. He has kidney cancer or RCC (renal cell carcinoma), as they like to say in the patient communities.

I don’t use the term very often, for what does RCC mean to the average patient. Perhaps it is only some letters printed on my painting ladder. I am sure it means a very different thing to the custodian of this building.

So, my sweet Fred dangles with his bones laid bare and he looks at you. His upside down face filled with the acceptance preceding death, whilst his hands are bound together in hospital bracelets. He understands that it is time to fly.

On the woman’s left arm an older man flails like a toddler reaching a lost toy as a parent sweeps him up. But these toys are his undoing. For this is my Father and he did not have to die. But pills and beer and diabetes do not good company make. So as the years past my Father would lose his health, his sight and his life to a poorly maintained medical condition.

And when it became too late and his shunt would fail, he would die alone. When the nurse called with the news that the shunt had failed, we would not know that meant drop everything and come. We did not know. He was our Father, good or bad, and should not have died alone.

So, I pulled an all-nighter like the many I had pulled before with Fred. And looked into his eyes again and I groked in fullness. If have read Robert Heinlein’s “Stranger in a Strange Land” you know the meaning of the phrase. I sometimes hear it tossed about in a cavalier fashion by my tech geek friends. But it means something so very powerful. To grok in fullness you must embrace that which you do not understand, absorb it fully, become one with it. And only then can you hate or love a thing. Only when you know it better than you know yourself.

Yes, I grok acceptance.

Plans

2011-11-04T11:03:00.000-07:00

If you know me personally, you might have noticed I do not do things by half. It does not matter if I am working with children creating art, selling toys in a toy store or making costumes for Halloween. I brought this same intensity to my pursuit of medical advocacy. When Fred first told me to “go after them.” He knew exactly what he was asking for. He called it “pulling a Regina.” He knew I would use every tool within my reach to attain this goal, and I would never stop.

But it is hard to maintain this intensity in all aspects of life. Some things must be let go in the pursuit. This year is the first year in almost a decade that I am not a pre-school teacher. And this year is the first year in his life my younger son Isaac wore a purchased costume for Halloween.

Halloween was quite the challenge this year due to conflicts within my speaking schedule. A little over a month ago Chip Taylor, MD Medical Director, Oregon Health Information Technology Extension Center asked me to speak in Oregon on November 1^st at the OCHIN Learning Forum. I looked at my calendar and saw November 1^st was available, and told him yes. I would love to speak about patient centered care and patient engagement through access to the Electronic Health Record.

I forgot that meant I would be traveling on October 31^st. Halloween.

Two weeks preceding the trip to OCHIN I attended Isaac’s Fall Fair at his elementary school. There he fell in love with a Green Lantern costume donated by another child. It was Green Lantern in the classic comic book style. In the past I have always made the children’s costumes. But this year I gave in and purchased Isaac’s. I sewed up the tears at the various seams. Hemmed the pant legs. I took Isaac shopping to find a Green Lantern Ring and created a new mask, as the original was long lost. Freddie, Isaac’s older brother, still got a homemade costume of a rather obscure character named “Zero” from Code Geass.

I then spent quite a while on the phone with a lovely lady working with OCHIN to find the last flight leaving DC on October 31^st. I would get to trick or Treat with Isaac for one hour. We walked down the avenue to tick or treat at all the local shops on Connecticut Avenue by the toy store Child’s Play. Isaac had a blast in his Green Lantern costume. He was very proud of the costume he picked out. I was wearing a Hogwarts robe from 6 Halloween’s ago.

When we went into the toy store, my old boss Steven looked at our costumes in dismay and disappointment. He said it did not look like what he expected from me on Halloween. Isaac did not notice he was happily getting candy. Soon after, I was on the bus with Isaac preparing to drop him off with my friend Miriam to Trick or Treat with her children. On the bus, Isaac looked sadly down at his candy and said he would miss me tonight.

I felt so bad.

Once upon a time Regina would have wowed the crowd and her two sons with amazing handmade costumes. And she would have a husband there to take pictures of us all. And we would have eaten supper together and trick or treated as a family.

But Daddy died, and Mommy fights against injustice and little boys sometimes have a lonely Halloween. If there is one thing I have learned in the world of medicine, is forget about holding tight to your plans. I learned that lesson in March of 2009. I learned that as we sat in rooms and waited for doctors that never came and records that were never opened.

Sometimes things do not go as planned.

So, I boarded an Airplane at 7:30pm at Regan National on October 31^st still wearing my Wizard’s Robes. I spoke the next morning before the folks at OCHIN. My Presentation was called Trick or Treat, and I wove references to Halloween throughout the speech.

I then began to paint. I painted in two sessions in the morning. The painting is called: “50%.”

I saw the first presentation “Integrating Mental Health into Primary Care,” delivered by Tami Hoogestraat, Psy. D., M.B.A. and Demetrio Sanchez, MSW-OHSU, Richmond Mental Health Integration Team. I was very impressed by their slides. An early one really caught my eye with its statistic: “50% of mental health problems are missed in primary care.”

A diagram of an integrated care model soon followed that slide. It reminded me of a spider’s web.

In this painting the patient is divided in half just like our statistic. Half in darkness half in light he clutches his medical home. The medical home is colored like and reminiscent of a Monopoly house. It is an ideal but will not work without a supported reimbursement model.

To the left of our figure the spider web diagram of integrated care places the patient in the center. But this no comforting circle enclosing clinical text. Here the patient looks up staring at the viewer whilst frightened. Practitioners that are trying to care for him surround him. I added other threads crossing the path of the diagram to the other care agents and detriments in the man’s life, be they friends, foes or family.

There is a hope within this patient, but it is an anxious hope.

To the right side of the painting blue swirls of energy cascade upward. A staircase follows the upward cascade. This part of the painting was inspired by the next session “Advanced Access Management in an FQHC.”

Here patients race up a stairs trying to make their appointment time. A mother glances nervously at her watch as she hurries her child up the stairs. A doctor waits at the top reaching out to the registered patients with one hand. In the other he hoists a rope that ends in a watch. A patient in an examination robe strenuously climbs the rope. She is not scheduled but direly needs care, and the doctor is trying to fit her in, hence the term advanced access.

In the afternoon I attended Chip Taylor, MD and Clayton Gillett’s presentation “Case Studies in Re-designing Visit Workflow for Meaningful Use.”

It is entitled: “The Faces of Meaningful Use.”

I decided to take the OCHIN logo and modify it to a Meaningful Use Sun image. So a logo tree becomes the tree of knowledge, weighted heavily with apples. Surrounding this tree are dots. But these dots have become faces, just as much as data points and statistics represent real people. These are the patients and providers creating the workflows for Meaningful Use.

Below this meaningful sun, apple cores are placed upon a mountainous terrain consisting of stacks of pointed paper. These are the ‘core measures” of Meaningful Use. One patient in the foreground eats an apple and adds to the creation of a new “core” measure.

The other patient in the foreground is inspired by the last session I attended: “Immunization Registry: State of Oregon” presented by Mary Beth Kurilo, MPH, MSW. This patient happily holds up an I-pad stating: Alert HL7. The L within the HL7 is created by shape of a vaccination shot. He is happy because easy access to immunization records will ease the work of each harried parent, teacher and doctor all over the state and this will be done in a standard code.

At the end of the day I presented the painting before the crowd with a short explanation. Afterwards a few people cam up to talk to me. One was a lovely woman in a purple blouse that criticized “50%” as being rather dark in light of all the strides made toward integrating mental health in the primary setting. I said yes, it is a little dark, but this is the patient perspective and even though strides have been made he is still very anxious. Next Chip Taylor thanked me for the day and said he would love hang the Meaningful Use painting at OCHIN. He also thanked me for creating a custom speech designed just for them. I thanked him for inviting me and I responded that I always try to create each speech as a custom tailored message of patient engagement for each audience.

And that was probably the crux of my Halloween sadness this year. I don’t tend recycle speeches just like I don’t tend to recycle costumes. I love to create each one custom made for the recipient. This year I did that OCHIN, and my little guy happily wore a recycled superhero costume. He was happy in his costume and he knows why Mommy does what she does.

Trick or Treat

View more presentations from Regina Holliday

Later that evening I sat down exhausted in the Portland airport. My flight would not leave until 11:40, but my body felt like it was around 1:00 am. I lay my head upon my backpack and pulled out my Wizard’s robe to wrap around me thankful that I had a recycled costume with me as snuggled down for a few moments of sleep.

Before dozing off I remembered, Today is All Saints Day. Halloween might have been a disappointment, but for many in the Patient Safety and Patient Rights community I was doing the best possible thing on this day. And if they were still with us I am sure they would tell me so.

Mentors

2011-11-03T13:58:00.000-07:00

Mentors

In the spring of 1991, I was a senior year in high school. My sister Esther and I were a very active in speech and debate. My goal was to qualify to attend regional competition in every category of competitive speech and attend National Competition. I very nearly reached my goal and did compete in every category prior regionals. As a freshman and sophomore I competed in Prose and Standard Oratory, as those categories are exclusive to those years. In the school year of 1990-1991 I competed in Original Oratory, Dramatic Interpretation, Humorous Interpretation, Domestic Extemporaneous, Foreign Extemporaneous, Monologue, Humorous Duet, Dramatic Duet and Poetry. I also debated in the Lincoln-Douglas Style of debate. My sister qualified as well with a lovely oratory comparing the ups and downs of life within the metaphor of a yo-yo’s path.

It was a lot of work, but I am very glad I did it. I memorized hours of material in the attempt. I pored over newspapers and magazines to create files of support documentation for my extemporaneous speech. I spent hours organizing data for quick access when needed. I carried those files in heavy file boxes from tournament to tournament.

I had no idea how such preparation would help me in the years to come.

My success was somewhat amazing when one considers our family background. Neither one of my parents had graduated high school. We were very poor. My parents were going through the process of divorce after years of domestic abuse. I had no money for the multiple fine dresses one need to compete in. Everything was set against me, but I had a special reason for succeeding.

I had a mentor.

Jeanne DeVilliers, otherwise known as “D,” was my debate coach. She was a wonderful woman who was there for me in so many ways. She helped me pick out amazing material to perform. She constantly challenged me to do better. She would even take me shopping to get the appropriate clothes. I remember her lessons and words to this day. There is not a speech that I perform without feeling her supporting presence.

That spring of my senior year, I qualified in regional competition and attended the Oklahoma 1991 4a State Competition in both Original Oratory and Poetry. After many grueling rounds in both events, I won state Champion in Poetry recitation. I had performed The First Quarrel by Alfred Lord Tennyson. It is a heart--wrenching poem about the last harsh words between a husband and wife before the husband is lost at sea. I was honored to win the State Championship in poetry, but the greatest event was yet to come. Regional competitions can take you to state, but National Forensic League district competition can take you to nationals.

I was so excited to attend district competition.

Many speakers would disdain the judges at regular competitions. At simple qualifying regional events judges were often regular people: bus drivers and locals that wanted to get the twenty-dollar payment for judging for the day. Their only instructions were the rules on the top of the ballot. They would judge for or against based on simple things like whether you were persuasive or not. They wouldn’t notice whether you were completely correct in your citations. They did not realize the great error of gesturing too much in poetry or moving both feet in dramatic interpretation. Bus drivers and locals tended to focus and performance and not rules or points or citations. I loved them. There were no power plays and no infighting. They often gave me ballots with the most worthwhile instruction.

At district competition, every judge was immensely qualified. They were all coaches or prior students now pursing college degrees. They were all very aware of the rules and following breakout sheets just like a basketball fan follows the brackets during March Madness. I was so excited during the breakout postings as my name kept rising on the lists, until at last I was in final competition in two events. I competed in both dramatic interpretation and original oratory.

Due to a failure of communication, I was judged down in both.

Prior to the announcement of the winners, my wonderful coach Jeanne DeVilliers took me aside. She said, “Sweetie, I have some bad news for you.” I looked at her in horror. I looked at the thin translucent skin of her face, her sparse eyelashes and her carmine lips. I really did not want to look in her understanding eyes as she told me what had happened. I had been in two finals rounds. Each round had three judges. Those two sets of the three judges had not spoken to each other, but both sets had made a fatal error as far as my national competition hopes were concerned. Both sets of very qualified judges had judged against my performance in an attempt to give more seniors the chance to attend nationals. They had both assumed I would come in first or second in the other competition, and so accordingly, both sets of judges had judged me in third place.

I failed to qualify for Nationals. I would not get to speak in Washington DC. It might not seem like a very big deal. But to me it seemed as though my world had crashed down around me. For a very long time, this was the worst moment in my life. I was a failure. I would go to college in the fall, still thinking I was a failure.

I would not give another speech for the next 18 years. I would work retail, I would teach, I would be a mother, but I would not be a speaker. Then in 2009 Fred grew sick, and I dusted off by brushes and my speaking skills.

Once again I would find a Mentor and this mentor is named Ted Eytan. Ted asked me to do my first speech in the world of patient advocacy.

In the fall of 2009, I delivered my first speech in the Nation’s capitol.

Ted constantly challenged me to grow as a speaker and learn more about data rights, patient advocacy and myself. For the past two and a half years I have depended on Ted’s guidance. He has photographed my work and tweeted my speeches.

On November 1^st, the Fast Forward Film Festival premiered the documentary short:

73 Cents

The talented Jamie Crausman, Ben Crosbie and Tessa Moran created the documentary. It focuses on the painting “73 Cents” and my first year of patient advocacy. I could not attend myself as I was presenting in Oregon a speech about the importance of patient access to the Electronic Medical Record.

Ted introduced the video before the crowd in Washington, DC. I could think of no one more appropriate. Well, it would have been nice if Mrs. Jeanne Scott nee DeVilliers could have been there too, but I am sure she was cheering us on from her home in Oklahoma.

The Rainbow Button Initiative Puppet Show

2011-10-31T09:28:00.000-07:00

Joy.

I want you to really think about joy. Think of the joy of a small child playing. Think of how that joy lights up a child’s entire face. It seems as though they shine as brightly as the sun. Then life passes by and often that sun sets. We spend our adult lives searching for moments of joy. And here and there they appear: a wedding day, the birth of a child or perhaps even in an amateur puppet show.

On the evening of September 25^th 2011, an ensemble of dedicated healthcare enthusiasts gathered on the main stage of Health 2.0. We gathered at the same time that the Health 2.0 VIP cocktail reception was under way. Other than our small group the venue was completely empty. Some of the performers had weeks in which to prepare and some of them were drafted on the spot. Several attendees from the Office of the National Coordinator of Health Information Technology thought they would be the audience, but instead became puppeteers. We were able to film and perform the show three times. It was wonderful. Each time the cast offered great ideas to improve the performance. As their arms shook with fatigue, they smiled and danced and rapped. They were brilliant. From my perspective on the stage over looking the row of puppeteers and voice talent, I can assure you I saw a look upon their faces like those of my pre-school students.

Their faces shone as bright as the sun and we created a rainbow.

The puppet show came very close to not happening at all. It was an idea that came out of a data group planning committee meeting for Health 2.0 San Francisco. We had been discussing some elaborate data sharing concepts and agreed that many were complex and needed more explanation. I suggested we could do a short puppet/Muppet show explaining the Rainbow Button Initiative. After the call, I spoke more with Hamish MacDonald, co-founder of Lifetime Health Diary, and Mark Scrimshire of HealthCamp about the play. There would be puppet roles as well as actors in the tradition of Sesame Street. Then I had the honor of speaking to the famous Ross Martin, composer and lyricist of “Meaningful Yoose Rap.” He agreed to do the rap.

We were ready to roll, but in the week preceding the event, I got the dreaded email from the Health 2.0 staff. The show schedule was running long. We would have to cut the puppet show to less than five minutes. As such a cut would remove most of the speaking rolls, I told Health 2.0 to pull the show from the schedule. I shared my sadness with Mark Scrimshire. He came up with a brilliant idea. We could film it at Health 2.0 and post it online. I responded that we could even enter it into the Disposable Film Festival sponsored by Practice Fusion.

We were back on.

Several amazing folks agreed to play their roles onstage as people not puppets. Lygeia Ricciardi, Senior Advisor for Consumer e-Health at the Office of the National Coordinator of Health Information Technology would play herself upon the stage as puppets began explaining the Rainbow Button Initiative. Claudia Williams, Director of State Information Exchange Program at HHS, Office of the National Coordinator of Health Information Technology, would also play herself until we realized we needed a voice to play the Earth Mother/Green Button and she would quickly change rolls. She dove into the roll and even performed a rap with no preparation. I too would be on stage as the patient/caregiver trying to navigate these data access waters. Mark Scrimshire, the co-founder of Health Camp Foundation, would appear onstage as the white button and would rap as well.

Each puppet had a voice actor and puppeteer, and wow, what a team each pair made! The puppeteer Andre Blackman performed the part of the doctor.

Andre is very involved in public health and is the Director of Digital Communications/New Media at the American Heart Association. The voice talent for the doctor was Jim Hansen Vice President and Executive Director of Dossia Consortium. Erin Poetter, of the ONC was the puppeteer for the Nurse Puppet. Sunnie Southern, founder and CEO of Viable Synergy, provided the voice for the Nurse.

The loveable dog was the voice and puppeteer work of Lon Levin, Illustrator and Designer of Levinland Studio. Award for best eyebrow manipulation must go to Katerina Jackson-Suchkova http://www.flickr.com/photos/60284414@N05/6198652217/, marketing director of Lifetime Health Diary, as the puppeteer of the Medical Records Department Puppet! Dan Munro, CEO of iPatient, was the voice talent that greatly augmented these amazing eyebrows.

An archetypal character puppet portrayed each Button that creates the Rainbow Button Initiative. A Military Puppet represented the VA Blue Button.

The puppeteer was Megan Mitchell, a 15 year-old artist from Washington DC. The Voice talent was proved via the booming voice of Matthew Browning, RN and CEO of YourNurseIsOn.com. The Green Button was designed as an Earth Mother Puppet. Claudia Williams proved the voice of the Green Button and her puppeteer was the hard working Erin Poetter. The last button to be portrayed by a puppet was The Red Button representing privacy. We thought a celebrity puppet would be an understandable puppet representing a need for privacy.

Cindy Throop, Health IT research Analyst for RTI, was the puppeteer of the Celebrity/Red Button Puppet. The celebrity puppet was even granted her own bodyguard played by Alex Fair, CEO and founder of FairCareMD. He was wonderfully intimidating in a Secret Service kind of way. Louise Schaper the CEO of the Health Informatics Society of Australia was amazing as the voice talent of the Celebrity puppet. Her Australian accent gave this puppet quite the celebrity flair.

Finally at the end of our little play the Ross Martin Puppet rises up and leads us in a rap. Ross played himself via a voice recording. The puppeteer was Damon Davis, Special Assistant to the Office of the National Coordinator of Health Information Technology. He was incredibly into the role, moving his puppet to the beat of the rap. Ross writes about his involvement here:

The American College of Medical Informatimusicology: The Rainbow Button Initiative: A new milestone in Medical Informatimusicology history has been reached with the release of The Rainbow Button Initiative video from the Sep...

We had the honor of being filmed by Gregg Masters, CEO of Xanate Media with still photography taken by the Health 2.0 staffer. Gregg also edited the production and posted it online.

That was all of us. We were patients, providers, techies and employees of the government. And we were filled with joy. It may seem that a puppet show is a silly and simple thing, but puppets can do amazing things. They can explain complex concepts, like reading or data sharing in health. They can even help you say goodbye. As we ended the session, I explained where the puppets came from. They were a wedding gift to Fred and I from his teacher Gerald Snelson. We had loved these puppets and I know Fred would be so glad to see them used in this new way.

For Fred was a puppeteer himself, and if you have not seen it yet. Here is his final puppet show.

Open and Transparent

2011-10-25T06:42:00.001-07:00

Last week I attended the Adventist Health Physician Leadership Symposium focusing on Quality and Technology in Sacramento, California. It was a lovely conference and I attended and painted the sessions all day on October 18th and the morning of the 19th. I also delivered a keynote speech.

The first painting is "Bursting into Song."

This painting was inspired by the morning session. As the conference began, Scott Reine, Executive VP/COO, Keith Doram, MD, VP, CMO and Steve Margolis, MD, Asst VP, CMIO welcomed all the attendees, but especially the folks representing the rural health facilities. And so the painting began with a sky at dawn painted in swirling tones of red.

On the distant hills rise two barns with two silos. Ever so small doctors walk toward the viewer leaving these hills behind. In the foreground are two other doctors. These doctors are Barry Levy and Ed Schick. The are singing and their hands are raised in supplication or praise. They are singing a musical: Damaged Care: The Musical Comedy About Health Care in America.

I could not believe it, I was attending a medical conference where Doctors where singing about the failings of our current health system. It was beautiful and tragic. I painted them as I would paint the character Curly in the opening stanza of the first musical "Oklahoma." They may be singing about the effects of damage but they are also are singing of hope. They are pointing out the care we could have if we changed our system. Oh, what a beautiful morning that would be.

The next painting is entitled "CDS." It was inspired by a speech given by Scott Weingarten, MD, MPH from Zynx Health and a following speech by Dr. Eric Hartz, CMIO of Eastern Maine Medical Center. This painting started as three red letters: CDS, the abbreviation for Clinical Decision Support. As Scott began talking about the power of tools such as CDS to help people, the letters CDS became the dancing forms of human beings. The C was a woman with her back arched, The upright stroke of the D, a man looking out at the viewer. The curve of the D as a pregnant mother. Finally the S was another woman in the midst of a spinning dervish.

Scott wanted us to see the people in the picture of medicine. He even showed us a stock photo image in support of ACO's (Accountable Care Organizations) and explained everything that was wrong with the picture. I almost jumped for joy! If you have read my blog, you probably know I despise stock photography and it was delightful to hear a Doctor as upset as I was by unrealistic images.

Later Dr. Hartz spoke in depth about CDS in relation to cancer care. He explained blood transfusion protocol. Now, the painting began to storm with emotion. The blue sky began to fill with purple tornadoes of change. Tornadoes are scary, change is scary. From the questions I heard from the audience, quite a few people were scared of the change to come.

Within this maelstrom, IV towers with blood transfusion bags dot the landscape. In the center of the painting a cancer patient holds up a lap top with the help of a tree. In the center of the lap top screen is a heart. Within the heart is the symbol for a strong WIFI signal. This image refers to an earlier comment in the day, "We may love technology, but it cannot love us back." No, technology cannot love us, but we can use that tool to show our love for others.

The final painting is called "Open and Transparent."

I love this painting. It refers to a term we hear often in Health IT and patient rights. But what does it really mean to be open and transparent? The last speeches I had the honor of hearing were performed by Phil Kibort, MD, CMO Children's Hospitals and Clinics of Minnesota and Karen Mathias, RN Director of Simulation Center of Children's Hospitals and Clinics of Minnesota.

They spoke lovingly of the pediatric care they provide in Minnesota. They explain their decision to create a bus that would tour the state giving rural hospitals a chance to practice using their crash carts in simulated pediatric care.

So within the painting, we see a little girl in surgery. She is not smocked and covered. Instead she is dressed as the little girl she is, so precious to us all. Her chest is open and a transparent rib cage can be seen though her chest cavity as well as the metal table beneath her. She is a child and must treated as one, hence the importance of simulating such care. She is surrounded by five small children preparing to do the surgery. They are play acting with every child focused intently on the game.

The little girl looks upon the viewer without judgement. Her face has the solemn countenance of youth. She trusts you. She hopes you will play the game with as great an intensity as she would. And she hopes you will see her as she is, open and transparent.

Mission Statement

2011-10-20T10:32:00.000-07:00

When I was in high school, I loved two subjects: Art and Speech & Debate. I tried to balance the two worlds and do both. I also felt the voice of God within my life and would try to present that message within my work. I wrote speeches with biblical references and my wonderful debate coach would admonish me saying, “Now Regina, you are writing a speech not a sermon, stick to the point.” In art class, we were told to stay away from using religious imagery as it was considered controversial. In response, I choose to paint the hand of God as a tempera project studying the contrast of warm and cool colors. I was a good student so other than the occasional rebellious inclusion of God within my art I would keep them separated.

I would keep them separated for the next 20 years. I could speak, I could paint or I could talk about God’s work within my life, but I could never do that within the same venue. When I began to speak after Fred’s death, I would call it a mission and a calling. And many people accepted those words as secular terms. But others heard a deeper meaning. One such person was Tim Riley, Vice President of Hendrick Health System. He saw my presentation at the Premier Quest Event in Nashville. He heard me speak and he asked me to present at Hendrick in the fall. And then he shared the Hendrick Mission statement with me: “To deliver high quality healthcare emphasizing excellence and compassion consistent with the healing ministry of Jesus Christ.”

Ten years ago I was working as a retail manager in the college book industry. I would attend many educational sessions at national trade association meetings. Several of these meetings stressed the importance of creating a mission statement. It became quite the fad to spend days in internal meetings creating mission statements. I was saddened to see many organizations create them only to shelve them away in some cabinet drawer or just mention them in a new employee packet. I saw far too many mission statements within organizations that were at best a corporate check off the box and were at worst a glaring lie when compared at their business practices.

The term “Mission Statement” has a deeper meaning than that of a corporate fad. It is a term that has been used for generations within Christianity to explain the mission of Jesus Christ. Some hospitals today have mission statements that follow this older tradition. One such Hospital is Hendrick Medical Center in Abilene, Texas.

I had the honor of speaking and painting at Hendrick Medical Center on October 6-7^th, 2011. Prior to speaking I toured the facility and saw their construction site as they are building several new floors within the hospital. Everywhere I turned I saw visual reminders of their mission on the walls and in the helpful smiles of those around me.

Inspired by the tour I painted “Mission Statement.”

In this painting, the physical structure of the hospital combines with and is embraced by Jesus Christ. As Jesus wraps his arms around the structure of Hendrick he looks lovingly within.

A large chasm of construction opens within the structure of Hendrick. The blue length of cloth descending from Christ’s body, spools within the frame and becomes data cables that terminate in a USB port. Beside the data cables, an open ladder stands steps rising to heaven. To the far left is a tree with apples upon it. This tree is painted in the style of the trees that are being built in the Pediatric Ward at Hendrick. If you look closely at this painting, it will seem un-finished. It is under construction, just at the Hendrick Medical Center is. It is in the process of a continual striving to live and work within its mission and it shall never be complete. The architectural blueprints will always handy for reference and the mission statement never locked within a drawer.

I was very happy to paint at Hendrick. It was the first time I have painted in the lobby of a hospital. I usually paint in front of a hospital, on public sidewalks where I cannot be told to cease and desist. But Hendrick Medical Center Staff invited me in and let me paint right beside the information desk. I could interact with any guest or patient that walked by my easel. I was once again inspired.

This painting is “How may I help you?”

I watched the helpful volunteer who greeted all who entered the door. I saw her as she is, was and always shall be. She stands behind the desk as an elderly woman greeting the visitor.

Below the desk, she is the young woman who looks straight into the soul of the viewer. She maintains direct eye contact, as though to say at this eternal moment there is nothing more important than paying attention to your needs. Her long golden locks of hair swirl behind her. When you combine her youthful form with her elderly stance, those silhouettes create the Alpha and Omega. Above the desk, floats an architectural detail. It is a ring that repeats the circular form of the desk. It is also a halo representing eternal life and a sense of the sacred. Whilst I was painting this, a staff person remarked that I had included a halo within the picture. I pointed out to him the architectural detail on the ceiling. He was amazed having never noticed it before. I responded that we don’t always see God’s presence within our life, but he is always there to help us.

I had a great conversation with a Doctor while at Hendrick. His name was Dr. Steven Faehnle. He had been a pediatrician for many years and was now the chief medical officer at Hendrick. We talked about the power of the patient story and the importance of narrative in medicine. He even mentioned that he had made a short film. I was enjoyed speaking with Dr. Faehnle and I thought I must paint him. I did just that in “The Story.”

He had kind yet piercing eyes and he asked great questions. After we spoke for a while, he said, “You are eloquent and well spoken why not just speak about medicine? Why do you paint too?” I paused, “Well, I began with the painting and speaking came later. I have found the message is more powerful if you can do both.”

I am thankful that God has given me many talents, and I shall use them all in the way that Hendrick does. I will help “deliver high quality healthcare emphasizing excellence and compassion consistent with the healing ministry of Jesus Christ.”

Thank you amazing people of Hendrick Health System. Thank you for living your mission. Thank you for inviting me to speak and paint and talk about God’s presence in our life. If were are going to treat the whole patient we must address the body mind and spirit, and we cannot do that by keeping them separated.

It's only an egg.

2011-10-16T06:00:00.000-07:00

I have followed Gregg Masters as @2Healthguru on twitter since the summer of 2010. He has such a clear and powerful voice in our health care social media world. In his photo avatar his long white hair gives him the look of an elder or sage. In June of 2011, I saw Greg in real life. We were both participating in health innovation week DC and in meeting after meeting Gregg had amazing things to say. His unique voice was even more powerful in person. His hair white was shorn close and his every movement displayed vitality and vigor.

We stood in an archway of a crowded room and discussed our lives. We were both single parents working in health care. We could completely empathize with each other’s plight of spending time away from our children, in order to travel and do our life mission. Gregg’s babes have long since grown, but he had walked this path before me and understood. As I talked with Gregg, I felt the serenity of his presence and it seemed as though he was filled with a powerful and soulful energy. When I looked at Gregg, he sparkled. So, that is how I painted him.

This is “It’s only an egg,” Gregg Masters jacket.

The background of the piece is a rainbow of contrasting colors swirling together in a vortex. Upon these writhing streams of color a scarab beetle slowly walks. Here the beetle represents the journey Gregg takes. It represents the concept of hope and rebirth. It represents the years of hard work, rolling the dung-ball uphill, to reach a point of personal fulfillment and professional success.

In front of the scarab beetle Greg Stands. He smiles he his little half-smile as if sharing an in-joke with God. His sunglasses cover his eyes without distancing his soul, and an inner fire rises from his shoulders.

In Greg’s hand he holds a nest and an egg within. A series of Twitter birds fly away from the egg, as though scouting food, delivering messages or preparing the world for a new birth.

This jacket is the story of our movement of participatory medicine. Gregg’s voice is a voice that refuses to be silent, refuses to give up. In the daily grind of institutional medicine, there are many who say, “That is just the way it is.” “Nothing will ever change.” But Gregg cries out, Gregg questions. Gregg pecks at the interior of the shell and spreads fissures and cracks in the old way of doing business.

He may look harmless, he may look saintly, and he may seem to be only an egg. But Gregg will break forth, and with many other disruptive ones, Gregg will fly.

The Armor We Wear

2011-09-30T21:56:00.000-07:00

Before leaving DC to attend Health 2.0 in San Francisco, I finished painting Janice McCallum’s jacket. Though a series of emails I learned that she quite admired @cyberslate’s jacket with its Wonder Woman motif, and was saddened that she could not have that avatar upon her back. As our correspondence continued, I learned more about Janice. I learned that her father had brain surgery when she was only a babe of six months. I learned that Janice has always been interested in medicine since she was a small child, but as a girl growing up in the sixties well meaning adults thought that meant her interest would lead her into nursing.

Janice stayed interested in medicine and this led her into the world data aggregation. She realized early on that the electronic medical record is the patient story. She lives within the many worlds of social media following multiple conversations. She discusses trends and controversies within health policy, pharma, provider and patient communities. She told me all of these things, and I painted her thus.

The Armor We Wear: Janice McCallum’s jacket.

Do you remember Underoos? The product was developed in 1977 and the concept was simple. Underneath their regular cloths little boys and girls could have underwear that was designed to look like a super hero costume. In 1980 many girls and boys proudly wore underwear that acclaimed look at me, “I am Wonder Woman or I am Superman!” And they often wore it at home without the protective outer layer of clothes of Diana or Clark Kent. The commercials even seemed to normalize such behavior.

I took one look at it and knew it was dangerous. I was only eight years in 1980 but I knew it was not safe to walk around in underwear. We were safer in street clothes.

That was the armor we wear.

But in this painting I depict a young Janice dressed only in Underoos standing by a fountain. You see Janice speaks openly in the transparent and eternal world of social media and the armor she wears is her bravery and honesty. She stands up for patients while wearing her “unmentionables.” She is washing her hands within the painting in an over-flowing fountain. Here liquid data spills in an ever-flowing stream of twitter updates and conference posts.

Behind Janice a Pan-Am stewardess holds out a tray with a brain upon it. This represents both her father’s procedure and her own decision to develop her brain over her brawn.

To Janice’s left a nurse stands, offering her another life path as a caregiver. The nurse looks with a troubled countenance into the distance. Perhaps she would have chosen another direction: a life as a doctor or data technician if she had been born in a later time. Nursing is a grand and noble profession, but it is a calling and it is not for everyone.

All three figures have feet chopped off within the frame; this represents the hobbling that still exists within many professions for the female employee. All three have faces that show concern and worry.

But they are brave, and each walks forward into life helping others, costumed by the armor they wear.