#OccupyHealthcare

Tuesday September 20, 2011 I met Ben Miller at the annual AHRQ meeting near Washington, DC.  You might know him as @Miller7 on twitter and his social media voice is loud and powerful. I have followed his wisdom for years, but on September 20th I had a chance to meet him in person.  He is a kinetic flame caught within a human form.  His slight body moves through the crowd like raindrops on a windowpane.  He is quick, unpredictable and oh, so very graceful.

He was wearing a three-piece suit and I offered to paint his jacket then and there.  He cocked his head to the side and smiled with an impish grin replying, “My wife would kill me if you did that.  This is my good suit.”  Not wishing to create martial discord I offered to paint another suit as soon as he could send one.  Then Ben invited me to attend his Mental Health Town Hall meeting the next day and I would paint the session.

I came to Ben’s session with my French Box Easel in hand prepared to weave through crowds in order to set up in the back of the room.  I was dismayed to arrive and find a room designed to seat 300 with about 50 attendees.  The room next door with its presentation about Partnership for Patients was filled to capacity.  Was there so much stigma attached to mental health that even attending our session was verboten?  I furiously began to paint. 

I painted the jacket The Stream during that session.  I spoke to Ben afterwards saying I would like to help him in anyway I could, and especially would like to spread the word on what he was trying to accomplish in the world of mental health and patient access to data and health records.  

Not long after he contacted me about his new twitter initiative and blog: #OccupyHealthcare inspired in part by the #Occupy movement on Wall Street.   Quite a few outspoken patients and providers had been saying some rather revolutionary things for quite a while now.  We would tag them #hcsm or #ptsafety, but now we had a new tag #OccupyHealthcare.  Ben created a site that would gather our words and magnify them and in the months hence he has taken on a lot of issues.

So this is Ben’s jacket: #OccupyHealthcare.  In this painting the ivory tower is personified.  Three careers stand tall before us.  A primary care doctor, a surgeon and an academic loom large within the composition.  They barely see the little people arrayed before them.  Their eyes seem disconnected and distracted; the surgeon cannot even stop from checking her smartphone in this moment.  Her eyes dart to the side as the small crowd forms beneath her.

The crowd consists of patients and providers waving banners that say things like: “ #Occupy Healthcare” and “Join Us!” with a twitter bird emblazoned on the sign.  All those in the crowd face the monolithic ones and we cannot see their faces.  But even with this limited ability to read intent, the viewer can see that is crowd is not angry.  This is a crowd of collaboration.  These arms are raised in welcome, not attack.  They are occupying the space.  They may be small and slight but they are many.  If you think small and slight cannot wreak havoc on old forms, ask any homeowner their feelings on termites.

Nature is designed in such a way that which is old and dead will be recycled into something new.  This can happen gradually through rot, mold and small creatures working diligently to deconstruct.  Or destruction can come in a wildfire of change, but even then nothing is wasted.  Cinders make great fertilizer and they are a key element in cinder blocks.

I am so happy Ben joined the gallery.  He is one of 148 Walkers that scurry to and fro from medical conference to medical conference.   At HDI in Washington DC on June 5-6, 2012, quite a few people were amazed how many jackets were at the conference.  One attendee said, “I used to only see a couple of these jacket paintings at a conference, and now they are everywhere I look.”

You see we paint on business jackets for a reason, they a type of Trojan horse.  A walker is invited to a conference.  He or she looks normal from the front.  They are allowed in and only then does it become apparent that the patient is in the room and the dialog must now change.

The Walking Gallery is a very simple concept; we are occupying Healthcare.

The Turtle's Path

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

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

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

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



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

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

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



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

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

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

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

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

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

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

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

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

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

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

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

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



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

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

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

Little Miss A-Type Personality: Regina’s Jacket

I recently gave my sister a copy of my current business card. It says all the necessary things: my name, my phone, my email, my blog, facebook and twitter handles. It also has two paintings on the face of the card: “73 Cents” and “Apples to Apples.” I also have a painting on the back of the card. That painting is “Office Hours.” Esther asked, “What is the story behind that painting? A lot is going in the picture, and I know every element inside of your pictures has a meaning. Did you ever blog it?”

No, I havn't blogged “Office Hours.” This is a painting depicting one of the worst moments of my life.

When Fred was in the hospital, I spent weeks asking for information and getting very few answers. During the second week of hospitalization we desparately needed Fred’s disability paperwork filled out. Fred’s oncologist rarely came to the room, so the social worker said she could fill most of it out for the doctor. The doctor became very angry that we had gone around him to get the paperwork completed. He was also angry that I was asking questions. He went to my husband and saying, “I understand Little Miss A-Type Personality has been asking questions about this case.” Fred said yes, that I had been asking questions. The Doctor said, “Well, if she wants answers about this case, she should come to my office hours.” When I arrived to Fred’s room, he was very angry with me and worried that his care may become worse, since I had asked so many questions. I felt very torn, between wanting to please my husband and knowing that something was going very wrong in the way he was being cared for.

The next day I went to the Doctor’s office hours.

He never closed the door in the fifteen minutes I had to speak with him. He never stopped taking phone calls, nor did he stop talking to the nurse who had her keys in hand as she complained about the parking problems in the employee lot. He discussed with another nurse the transport and rooming arrangements of another patient by name. All the while I sat before him and waited in my chair seated next to the trashcan. When he began to rattle off the points of metastasis at lightning speed, I said, “Please slow down because I am writing what you are saying down, so I can research later on the internet.”

He responded, “I don’t like people who research on the internet.”

I said, “I am sorry, but I do not have a background in medicine, so I have to research to understand what you are saying.”

He said, “That is right, I am the one with the medical degree.”

I looked up at him as hid behind a computer screen. I looked at his medical degrees and awards on his right side and his family portrait on the wall to his left. I looked at that family portrait on the wall and I saw our little family. I saw him shatter our family like glass. We weren’t an important part of his day. A moment that changed my life forever was only one more appointment in his over-scheduled work-week.

So that is the story of “Office Hours.” And I think it is important that you know that story before you see my jacket for The Walking Gallery. It is important that you know about it, even before you consider the concept of The Walking Gallery.

For the last two weeks people have been asking me why paint business jackets and women’s blazers. Why not paint on a jean jacket or a tee-shirt? Why ruin a perfectly good suit? We paint on dress jackets because it is disruptive and somewhat wrong. Anyone who lived through the eighties can remember painting on jean jackets and tees, and recognize the societal approval of painting on such low class items. I still remember begging my Mom for a jean jacket for Christmas, and I seeing my mother’s consternation that I would want to pay good money for a garment that looked like something a farm hand would wear.

When I first began my advocacy work, I would attend events in my best Church dresses. It didn’t take long for me to feel completely out-of-place. I was not wearing the right uniform. I soon invested in the appropriate women’s blazers and felt an appreciable difference in how I was treated at events. I had adopted the conference uniform and now I could play with the form. To Paint on jackets that are worn at medical conferences, is to bring street-art into the c-suite; this introduces the gritty urban danger, the unpredictable element into the room. This is keeping it real.

And the business suit art that forms the body of The Walking Gallery is far more subversive than just gaining entry into the ivory tower and boardroom. This is taking a care paradigm and re-interpreting it. I know so many patients who suffered in silence while the world turned its back on their suffering. Now, when you turn your back on a patient you are actually communicating at a far deeper level, for on your back you portray the patient voice.

So, a doctor who wished to keep me small named me “Little Miss A-Type Personality.” I will embrace the moniker, and I will walk the halls of medicine wearing a scarlet letter. I will wear an "A" for the artist I am. Any artist with a capital "A" suffers greatly for her art.  I will paint my pictures with pigments mixed with tears.

This painting harnesses darkness, as I painted this jacket utilizing the power of negative space.  As defined by Wikipedia."Negative space can be used to depict a subject in a chosen medium by showing everything around the subject but not the subject itself. Usage of negative space will produce a silhouette of the subject."  I think this method of painting is very applicable to patients, as we are often left out of the big picture, and our presence is often defined by the space that is left empty and HIPAA compliant.   


This is why I paint. This is why I speak, so others shall not suffer as we did. I hope is so doing to take a negative space and turn it into a positive one.  For every action there is an equal and opposite reaction.  I hope the work we are doing this day can respond to all those other days when we suffered so.

Tonight, I showed my twelve-year-old son Freddie my jacket painting. He really liked it. He liked the palette that looked like a skull and he liked the cowboy paisleys. But he did not like the cartoon faces of pain that I held like a paper garland in the piece. I explained that is what the pain-chart looks like when you are in the hospital. He stared at me aghast. “Pain isn’t joke. Dying isn’t silly, like those faces.”

Oh, Freddie, I agree.

Painting a Gift for Alex Drane

I was at a dinner hosted by Mathew Holt and Health 2.0 in June of 2010, when I met Alexandra Drane. She was seated near me. I first saw her from behind. She was a slight woman in a light jacket. Her hair was long with sun kissed streaks. Matthew introduced us and as she spun around I was stunned by the presence of Alex. She was full of vitality and light. Within moments of meeting she told me about her company and her causes. Alexandra founded Eliza. Eliza is a company that uses computer technology and voice recognition software to help people to remember to take their meds and to schedule important medical appointments. She also told me the story of her sister-in-law Za. Za was diagnosed with cancer at the age of 32. She died 7 months later. She spent the last two months of her life in the hospital. She did not want to die hospitalized. Alex spent months fighting the system to try to get Za the best care. In the end, Za’s brother fought the hospital to help Za go home so she could spend her final days with her two-year-old daughter. Finally, Za got to go home and hold her daughter before she died. After this experience Alex, created Engage with Grace. It was a simple concept that involved asking important questions on a power-point slide. What if we showed one slide at conferences that asked five different questions about our end-of-life desires? What if we all took time to ask these questions to our friends and family? Could we have a better experience at the end of our lives?

The next day was Health 2.0 goes to Washington and I had a chance to see Alex speak. She was a dynamic speaker and she did a wonderful presentation of Eliza. I had a chance to talk with her that day and she said at some point she would like to commission a painting. We parted ways and time passed before I would see Alex again.

In October of 2010, I saw Alex at Health 2.0. She would tell me, once again, that she would like a painting. Perhaps a jacket like her friend Roni Zeiger had commissioned, or perhaps a painting for her father. We parted ways and agreed I would soon paint for her.

While attending Health Camp DC in November, Alex was emailing me about the painting. I answered her questions while listening to an unconference presentation. I was seated near two Eliza employees. I switched sessions and as the talk turned to drug compliance, I noticed that no one in my session mentioned the benefits of Eliza. I asked “Where are the Eliza folks?” And I as texted about the power of medical paintings with Alex, I spoke of the power of Eliza before a diverse group of medical professionals. Soon one of the Eliza staff came in and took over describing the system, and Alex told me the painting would be for her Father.

Later in November, Alex called me to describe her father. I was on jury duty at the time. During our short lunch recess, I stayed in the deliberation room and spoke with Alex about her father Douglas Drane. She described him as a loving, caring and energetic man devoted to many elements of alternative medicine… and he loved Dragons. Then the idea came to me, it would not be one painting, it would be two. This would be a juxtaposition piece that focused on balance.

This is “West meets East.” It consists of two 18x24 canvases. The background field is a deep bluish purple. Within this field, swirls of white form an infinity loop.

The left canvas focuses on elements in Western medicine, so the swirls of white on this side are suffused with pills and tablets. These are the drugs that can save a life or prolong it. A doctor looms over the patient in this scene. A look of concern is on his face as he provides chest compressions to our unconscious patient. He is trying desperately to save a life. The top half of the Doctors head is cut off in the frame. Is this case of a poorly framed shot? Or is this mechanical response on the part of the medical professional? Is this action without thought? The patient lays with her head dangling and her face serene. Her breasts are gone and are replaced with a heart shaped cavity in her chest. A stylized version of Alex Drane stares out at the viewer to the right of the doctor. Her hand is twisted and placed with the heart shaped cavity. Protruding from the skin of Alex’s arm is a child’s slide. Here is the One Slide Project. Here are the end-of-life questions that you should share with your family. Does this patient want to be brought back? Is this what she wanted at the end of her life? The patient’s body is supported by a western-style dragon. This dragon is reptilian and cold. It is green and blue. It is the color of money. It stands inside its lair; the hoarded loot within its claws are files upon files of medical records. Each record says EMR, EMR, EMR; and this dragon does not want to share its treasure. It is breathing a small tongue of flame preparing to destroy all that it cannot keep as its own.

In the right canvas the infinity swirls flow into an Australian aboriginal dot motif. This is dream time. This is where the soul meets the body. A massage therapist stands above our patient and rubs her back. She is serene and calm. Acupuncture needles are arrayed upon her face and an elongated needle upon her back forms a stylized caduceus. The wings of the caduceus are formed by the handprints of a child. The caduceus represents medicine, but also warns against false treatment. For not all alternative therapies are helpful, and some programs are more about thievery and profits, then health and healing. Our patient’s head is surrounded by a strong aura. Above this aura a Rosary is superimposed on the infinite sky. Is it Rosary beads and a Cross? Or is Orion and a compass rose? Where does faith reside within medicine and must it be disguised? Beside our patient’s face a bamboo shoot heroically grows out of our infinite swirls. Where is nature within medicine and how can green and growing things soothe the soul? This patient is supported by an eastern-style dragon. He is the red of fire, energy and passion. This dragon does not need to breathe flame, for he is flame itself. He is staring at his western counterpart with concern. He has no wish to destroy but desires to work in concert with the west.

These two paintings are meant to be shown together, for they are about balance. Patients will get the best care when we embrace the treatment path that is best for each patient. That means asking questions, answering questions and sharing information. Neither side is better than the other, but each part makes the whole.

Social Justice Camp II: On Water Ripples and Spider Webs

Social Justice Camp II: The Empowered Are Back is less than a month away. It will be on two weekends. It will have two locations. These two weekends will bookend and support the work of some amazing local activists and artists. On January 15 and 16, the traditional social justice group will meet. On January 21, we will collide worlds, and social justice will meet health at 7:30 pm at St. Paul’s Lutheran Church, located at 4900 Connecticut Avenue. There will be an ignite speech session. These speeches will only be five minutes long and will ignite the passions of the diverse audience. The next day, on January 22, we will start at 10:00 am in an unconference and do many breakout sessions about health and social justice topics until 3:00. We shall build an amazing web of advocacy.

Have you ever truly stared at a spider web? Have you seen it glistening with dew at sunrise? It is a thing of beauty. It is amazing that such a small creature could create something so immense, so beautiful, and so connected. The small spider may seem to work alone on this, dutifully extruding the silk that shall become the web; but all would fail without supports, without connections. Would there be a web without the branch, the shed, or the fencepost to provide a purchase? The web does not exist without a network of support. The web is an amazing tool; it catches sticky thoughts and activates people, and it grows.

I was invited to attend Health Camp DC by Mark Scrimshire (he is part of my Twitter web) on November 12, 2010. It was a wonderful event. It was hosted in an unconference format and the participants were from diverse health and tech backgrounds. I went to several breakout sessions, and in each session people began to focus on what health services were available to the poor, underrepresented, or disadvantaged within our community. As the conversation went further, I realized most of the people had never worked with the activist community in DC. They had few contacts with those people already making a difference in the public health within community. I was amazed. I asked if anyone had attended Social Justice Camp. I learned that only one attendee, Cindy Throop, had. I decided at that moment that Social Justice Camp must meet the Health 2.0 movement.

What is Social Justice Camp? It consists of an ignite session of short speeches and an unconference. Last year, I was invited to attend Social Justice Camp DC on MLK weekend by Aaron Ginoza. He read about my work on Twitter and thought I would be a good addition to the ignite session of Social Justice Camp. I went with my friend Cindy Throop. It was an amazing night! I met so many empowered and energized activists like Greg Woods and Kelli Shewmaker. They were so inspiring. Then sixteen people gave rapid fire five minute speeches with twenty slides, and I got a very fast immersion education about public health, homeless causes and the power of social media in Washington DC.

I left that meeting energized and made so many wonderful connections that would dramatically affect my life in 2010.

I met Chai Shenoy and Shannon Lynberg with Hollaback DC. They would inform me of the dangerous impact of sexual harassment on the citizens of DC. I would agree to work with them on a mural project, and at this point we are waiting for a wall on which to paint our vision. I would present with them at a Chispa event and blog talk radio.

I would meet Joni Podschun and Greg Bloom with the Save Our Safety Net campaign. They would invite me at attend city council meetings to show support for keeping city services intact for our poorest citizens. They created a branding campaign where our council leaders who supported the safety net were depicted as super heroes. So I painted a large banner for them of all the council members who had supported the concept. We then stood arm in arm around the Wilson Building supporting the safety net and holding up the banner.

Due to my work with Greg and Joni, I would talk with Lance Kramer, who would ask me to work on the healthy food in DC schools campaign. Lance and I came up with a great arts action but would not get to complete it due to a city council decision, but Lance would contact me over the summer to place a show of my advocacy art in the local coffee shop Modern Times in the Politics and Prose bookstore.

I met Eric Sheptock at Social Justice Camp. He was recently profiled in The Washington Post, and would learn firsthand of his homeless advocacy while being himself homeless. He would become a good friend on Facebook and would inspire me to host several events at my church St. Paul’s, that would fund our homeless shelter and homeless causes in DC.

In February, I would begin working with the 6^th, 7^th and 8^th grade artists at Deal Middle School on a series of six social justice murals. I would get to talk and work with fifty youths as they focused on, discussed, and then painted about social justice issues throughout the globe. These six paintings are on permanent display at the school. They look so pretty when you just glance at them, but if you take a moment and truly look at them, you can see the sadness they convey.

I would meet Amanda Jones from Out of The Boat Ministries, and she would alert me to the homeless youth who must couch surf from home to home as they do not have a safe place to live. Then during the blizzard in February, I would see a tweet from Amanda saying that she would need a place to stay once she came home via Union Station as none of the over-ground Metro stations were working. I replied that I was only five blocks from Van Ness/UDC, so she trudged over four foot drifts to come to spend the night. She played for hours with Isaac and filled our house with joy as she couch-surfed into our lives. In March, she would rally with me for patient’s rights. In May, she would come back to help me run a rummage sale at St. Paul’s Lutheran to help homeless ministries.

I would meet Ben Merrion who works with the non-profit DC Learns adult literacy outreach at MLK Library. I would find out that Ben was on the board of Hollaback DC. Ben too would rally with me in March for patients' rights. He would also attend my gallery show at Clinovations in July even though it meant missing a church choir practice. I would find out that in addition to being an activist, he was as geeky as the rest of my friends and family. He would come over and watch long Doctor Who marathons with Will Kemp, Michael Wenthe, Rebecca Boggs, and our little family. He helped bring back joy and laughter to my boys and me, and I can happily say that we both have Facebook profiles that state we are in a relationship. I think of the "trouble" we can cause together.

So, I can rightly say Social Justice Camp rocked my world. I made so many contacts that opened my eyes and sent me into new directions of thought. So, I would like all my health friends to meet all my activist friends so we can create some great ripples together. That is why I have teamed up with Social Justice Camp.

I would like to throw a stone in the water and watch the ripples grow. I would like to see what happens when we get such amazing people together and create an intricate web. I hope you can join me…. You can register to attend at here.

"Patient Centered Care" at IHI

“Patient Centered Care” as shown above is in progress on the 5^th of December, 2010 at IHI Conference in Orlando, Florida.

I paint about health data. I paint about patient stories and better healthcare practices. I paint about these concepts on public walls by city streets or on the backs of business jackets of healthcare advocates as they attend medical conferences. And sometimes I paint on canvases in the middle of a conference. When I paint onsite, I listen carefully to that which is said and incorporate the spoken meme as well as the twitter feed into the painting.

This painting is “Patient Centered Care” and I painted this at IHI (Institute for Healthcare Improvement) during the Patient Activist Summit and during two mini sessions on Health IT, Meaningful Use and Patient Data. If you look closely at this painting you see the background is the deep purple outline of the IHI logo. As the patient summit began the power point display was one slide. That slide was the IHI Logo. It loomed large above us as each activist introduced himself or herself. There were 50 or so activists and they were supposed to introduce themselves with a Twitter intro, keep it short only 140 characters. Not many were on Twitter so perhaps they misunderstood as they spoke too long during introductions. Perhaps they understood perfectly well, but after being in situations where no one listened while they or their loved ones where medically harmed, they were desperate for the chance to talk. So the “I” in the painting began to radiate circular waves of communication like a radio tower set to transmit. So we spoke, some tweeted and I painted.

I stepped back and listened to the patients and clinicians in the room who were willing to grasp hands and support the changing world of healthcare. So within the painting stand two beings. One is male and one is female and they are golden and seem almost holy and they clasp arms to support the world above them. On the right side of the golden female figure, a doctor stands. He is serene. His hand is placed under the golden women’s arm supporting her and joining in her effort. To the left, a young boy supports the arm of the golden male figure. In his other hand he holds an I-pad as this is the way the child communicates within his world. Both the boy and the doctor are people of color. Their inclusion is viewed as instrumental in creating balance within healthcare. Though they are on opposites sides of the canvas, they are the same person at different stages in one life.

To the far left, a suffering cancer patient leans on the shoulder of the golden male figure. Her gown back is gaping, but she is far beyond caring about this embarrassment, as she is deep within the final stages of her disease. She is leaning on the system for support and has no more energy to give. In front of her stands a child. This girl holds a children’s book about Phineas Gage. Do you know about Phineas Gage? He was a man who lived in the nineteenth century and had a metal rod driven through his brain. His story- the patient story- greatly affected the thinking of the times in regards to personality and the lobes of the brain. The child knows this story, she has read it in a children’s book. She knows about the power of stories.

The world in the center of the painting is the dot of the “I.” It is forms a yin and yang symbol within IHI where we are struggling to find balance. On the left side of the world North America is represented because that is where IHI began. An eye looks upon you from the continent. It is looking at you, demanding you use vision in creating better care. To the right side is a clock. The numerals are in Latin and the choice to depict time in ancient increments represents the current lack of clear communication and a reliance on old antiquated systems within many medical institutions. Both the hour hand and minute hand point to three ‘o’clock as we try to support the “triple-aim.” The clock itself represents an oft-heard clarion call of the activist: the time for change is now.

In the center of the world clock resides a call bell. Bart Windrum brought this bell so each activist could ring it after recounting his or her tale. It reminds us of to the old call bells patients used before modern technology introduced the silent, efficient and sometimes ignored call button. This bell is red and it represents warning. It is also a Liberty Bell and emblazoned upon it are the words “Information Liberty.” Above and connected to the bell are the scales of justice and they too point to the desperate need for balance between the provider and the patient.

Below the world is a table set to explain why clinicians need to consider EMR adoption. This element is based on the talk given by Ann Lefebvre, called “Integrating Health IT into a Statewide QI Program.” She mentioned that they invite their clinicians to discuss systems and EMR’s four times a year. So the table is set with plates saying things like EMR and HIT. The two candelabras at the table light the surroundings but they also contain the symbols of money and percentages. Often these kinds of talks can be more about incentives and dry data bytes and less about the actual patient outcomes.

Below the table is the Twitter feed for the conference and that pours into the patient centered medical home. The roof of this house is the IHI triple aim: population health, experience of care and per capita cost. The Cub Scout character connection of know, commit and practice surrounds it. I threw that in as I am a Den Leader and know that change only happens when you promise to do your best and you keep your promise. At the door of the home stands a very small patient. Patient centered care was discussed in an in depth fashion by Laura Adams, J. Robson and Jaquelyn S. Hunt during “Whose care is it anyway…and Can Health IT Help.” The patient is holding up a ruler and trying very hard to be centered, but if you look closely, you see the center of the painting and the home is slightly off kilter. This lack of center exists in the painting because that is the current experience in US health care. But there is hope. Due to the work of the folks from IHI and Patient Activists and Clinicians we have hope of attaining balance, and making this vision of the future a reality.

The finished piece can be viewed here. I hope you get a chance to look at it. This photo was taken right before I addressed the room about our family story and the meaning of the painting. I was not on the agenda that day, but the speakers were so gracious as to ask me to present. I told them about the very personal reason I advocate and I explained the painting.

The entire room of attendee's to the session "Who's Care is it any way...." gathered around the painting. You will see me in the middle, slightly left of center. I suppose that is a good place to be as we strive toward patient centered care.

Watching THE DAILY SHOW while Dying

Jeff and Fred in Hospice
Originally uploaded by Regina Holliday

When I young, I was a very good student at Sapulpa High School, but I was twice sent to the principal’s office. I was sent once for health and once for comedy.

I was a journalist for the high school newspaper and was looking for a story. The student body had recently completed a survey wellness check. I found out the school office had a copy of the results. I wrote an article reporting the findings. The statistics I mentioned included drug use, alcohol use and sexual promiscuity within the school. After turning in my story, I received a summons from the principal. The school paper would not print my story. I wondered aloud if I had made a mistake in my fact checking. The answer was no--they just did not want me to expose the results of the wellness check.

Later in the year, I wrote and directed the senior assembly, including the skits. I was called to the office yet again, as some of the skits contained a comedic analysis of the school that was a bit too scathing. I was ordered to revise the skits and make them “nice.” I to some extent complied, although a little of the original biting humor remained. I was tired of being called to the principal’s office. I thought it was rather ironic that it was called the principal's office, as I found my principles tended to get trampled there.

I had found that using humor and art I could often make a point that would never be allowed in the more mainstream press. I guess that is one of the reasons I spent over 10 years watching The Daily Show on Comedy Central. I liked the show, and Fred loved it.

If all clinical services were equal, would you decide which hospital to stay in based on whether or not they had Comedy Central? Fred would have. He stayed at five hospitals during his eleven weeks of care, and only a few offered this on their basic cable menu. Fred loved the program The Daily Show with Jon Stewart and its spin-off The Colbert Report.

Fred and I started watching this as our nightly news in 1996. Back then it was hosted by the very handsome and blond Craig Kilborn. I thought his very visage was in itself a joke about whom we choose as an anchorperson in this country. He was a very pretty talking head spouting humorous nonsense.

In January of 1999, Jon Stewart took over at the helm. Fred already loved Jon Stewart’s comedy work and was very impressed by this new shift in leadership. I was not an instant fan. The show seemed to get a bit more serious and the humor had more of a bite to it. This was now a thinking man’s farce and Fred would often use the Internet to do further research as stories on the show piqued his interest. We watched The Daily Show together for years and in 2005 began watching the spin-off show as one half of “Even Stevphen.” Stephen Colbert created The Colbert Report.

In time, I was won over by the program and began appreciating the biting satire that both shows used to lampoon political parties, world leaders, and the hapless celebrity. But I was most impressed by Jon Stewart’s autism benefit of 2008; as he asked for donations from the audience so few people raised their hands. You could see outrage on his face as he pledged to donate in front of a crowd who had far much more money but less heart. That day I began to love Jon Stewart, because it is all a joke…. until it is not.

In March 2009, Fred was hospitalized. There were many problems with communication at our first hospital, but at least they had Comedy Central available on their cable menu. When we transferred with an out of date and incomplete medical record to a new hospital. Fred was saddened to see that there was no Daily Show to help ease his pain. But at least this hospital had WIFI, so I was able to upgrade our old laptop so Fred could see past shows via the Internet and surf the web. As I have said before, there are many ways of relieving pain.

A few weeks later, Fred was transferred to rehab. At this facility there was no Comedy Central and no WIFI. After spending a few weeks suffering incredible pain in the rehab facility, the decision was made to enter hospice. Fred was crashing. Upon entering hospice, Fred was not eating, drinking, or talking. In 24 hours he rallied under the good care of the hospice team. He was able to talk with friends and family and watch The Daily Show again. A few weeks later Fred came home for hospice care. It was a very hard time. I was trying to balance caring for my husband with caring for the kids, while Fred’s mother helped as best as she could. It was very hard, but each night we would hold hands and watch The Daily Show.

Here we come back to the title of this post. In the early morning of June 17th, around 1:00 am Fred could not sleep. He was having such trouble breathing. I turned on the TV, and holding hands, we watched the late night repeat of The Daily Show and The Colbert Report. I don’t really know what they spoke about. I was listening to each breath Fred took and trying to ease his pain. I don’t know if it was funny. But I know Fred was happy to see a show he loved and hold his wife’s hand as he lay dying. Fred said his last words at around 6:00am, and by late morning he died.

When Fred had less than twelve hours to live, he spent one hour watching Jon Stewart and Stephen Colbert.

So this weekend, I will be attending Jon Stewart’s Rally to Restore Sanity/ Stephen Colbert’s March to Keep Fear Alive. In a way, I am sure Fred will be with me. It is being billed as the Million Moderate March. This is where all the regular people who do not attend marches can be counted. I will be there as the wife and mother and fan of the show. I will also attend as the activist I have become. Because sometimes things seem like a joke until they are not.

In researching this post, I called all of the hospitals that Fred stayed into verify whether or not they currently offered Comedy Central. I first checked every website to see if anything was listed in their patient amenities. Not one site offered a listing of Cable viewing channels. Each hospital seemed taken aback by my question, one hospital employee even laughed at me. No one knew the answer. In one hospital they transferred me to maintenance, after a pause of a few seconds the Supervisor of Housekeeping said, “Yes, we do have Comedy Central.”

I am glad. I am sure there is another Fred out there who laughing with The Daily Show as the morphine pump provides its gentle comfort. I wonder though, which pain relief is impacting the patient more?

MedStar CMIO Boot Camp: See Poe & The Mask of The Red Death

Recently, I was invited to attend the Medstar CMIO (Chief Medical Informatics Officer) boot camp by Trenor Williams, MD, CEO and co-founder of Clinovations and Gerard Burns, MD CMIO at MedStar. Dr. Burns had seen me speak on July 13 at HHS upon the announcement of Meaningful Use. He had thought I would be an excellent guest speaker (In my youth, I spent six weeks at Navy boot camp, and this was much nicer.). It was a conference held at the Doubletree in Columbia, MD. It was a calm, low-key event. I passed by a pool filled with families enjoying an end of summer swim as I entered in the mid-sized meeting room. I was very happy to be invited, and I thanked both the folks from MedStar and Clinovations.

In the weeks prior to the event, I researched several terms and acronyms we would be speaking about. Jeremy Wong, also from Clinovations, asked me to consider any articles I would like to include regarding “how patients feel they have been directly affected by something that occurred when their doctor used CPOE or clinical decision support.” Hmm… Well first I had to find out what CPOE and (CDS) clinical decision support meant.

CPOE is Computerized Physician Order Entry and is a very large aspect within the EMR and Meaningful Use. I don’t think many patients are talking CPOE. I did a search and found quite a few HIT (Health Information Technology) venders promoting the positive outcomes of CPOE adoption. I found the government encouraging certification of systems and patients advocacy groups concerned about potential deaths due to computer error. Where were the e-Patients in this conversation? I couldn’t find any reports or blogs from a patient perspective discussing CPOE.

As it was with CPOE, so it went clinical decision support. Clinical Decision Support Systems are computer programs that assist physicians in the decision-making process during diagnosis utilizing patient data. I could find virtually nothing written from the patient perspective on this subject. In researching patient involvement within these two terms, I felt like I was hitting my head against a wall. Physicians and hospitals were having a party, and they didn’t invite the patients to the gala event. So my mind began to search within and thought of gothic horror.

Instead of CPOE, why not see: Poe. (Edgar Allan Poe, that is.) That thought brought me right back to my 10th grade English class and The Mask of the Red Death. I knew what I would speak about at CMIO boot camp: Meaningful Use/patient access and The Mask of the Red Death.

On the way to the event my friend Dr. Ted Eytan and I had such a wonderful conversation in his zip car. He answered the final question I had. “How do you pronounce CPOE? As in "C.P.O.E.", or is it "see Poe"? I can’t find the pronunciation online.” Keeping his eyes on the road and smiling, he said that it was cute that I didn’t know how to say it. CPOE is pronounced. C.P.O.E. We laughed together as a doctor and a patient and went on with the drive.

Around noon, I was introduced as the guest speaker by three doctors: Dr. Gerard Burns, Dr. Trenor Williams and Dr. Ted Eytan. I was quite the special guest by the time I spoke. I decided I would inform the room of my ignorance of the correct pronunciation of CPOE. I could have just pretended prior knowledge, but instead I thought I should make it clear how little patients use these terms. I find great problems persist within the doctor/patient relationship when we smile and nod pretending to understand. So I admitted my ignorance of the correct pronunciation. I was surprised when the audience responded that both were right; it depended on the hospital. I told them great, because when I think of CPOE, I think of Edgar Allan Poe. I then asked how many in the audience had read The Mask of the Red Death? Three people raised their hands out of 40.

I was really feeling like a special guest speaker at that point. I had been married to a man who had a doctorate in film studies with an emphasis in television. We had often talked about special guests. In television, the special guest is sometimes a celebrity, but is always a performer outside of the regular cast. They do not belong. Often their insertion into the plot indicates the moment a television show has jumped the shark and fallen into the world of the absurd. Well, I could ignore the vision of my speech, or I could begin a dramatic recitation of The Mask of the Red Death. Have I ever mentioned that I was Oklahoma State Champion of Poetry Recitation in 1991? I decided to perform a tale of gothic horror.

"A prince invites the members of the aristocracy to masquerade ball at his abbey where they weld the doors shut as a plague called the Red Death blankets the land. As the partygoers enjoy the festivities flitting back and forth through six brightly colored rooms, a clock chimes on the hour, and silence falls each time. As the party continues, a figure costumed as a corpse appears. The prince takes such a costume as an affront and confronts the ghastly guest in the final seventh room drenched in the color black with red light streaming in. Upon facing the figure the prince dies and the party attendees soon find the guest wears no costume: the Red Death has walked among them."

It is powerful reading, don’t you think? It also functions as a very apt cautionary tale when you consider the way the CPOE is utilized in hospitals.

Why can’t I find the patient perspective on CPOE? We have not been invited to the ball. Where is the patient information entry aspect to be used in conjunction with the physician’s input? As the Meaningful Use rule points out, patient access is the core element in the functionality of a viable EMR (Electronic Medical Record.) While researching, I was deeply offended by the jovial comments about “sweet stimulus cash” that I saw posted on many HIT pages. Too many companies view ARRA and HITECH as a party they can attend while death walks the land. Locked up in ivory towers or data silos, too many members of the medical establishment are locking themselves away and closing the venues for communication.

I told the audience at the CMIO boot camp that twelve days after my husband Fred died, I attended NHIN Connect 2009. The grand ballroom at the JW Marriot was filled with HIT leaders, hospital administrators and physicians. I asked a question of Aneesh Chopra, Chief Technology Officer and Associate Director of Technology, whom had delivered the second keynote. My Question was, "Hi, my husband received his diagnosis of renal cell carcinoma on March 27. At that point, I began to email, do Internet research, try to find every resource I could to help him. I began to Facebook--Facebooked every night, daily stating his status, developed over 200 friends and then began to Twitter, ended up speaking to a doctor from Boston, Mass. Did everything I could as a caregiver to support my husband using the Internet. Developed a blog. Also asked for Internet data. Prior to this I did not (often) email, nor did I use a cell phone. During a three month period (I) became complete caregiver and a walking PHR for my husband. I am asking you: how will the patient and patient advocate be allowed to access the information of (the) EMR, to have that a standardized form, that we all as advocates of our spouses or loved ones, (can) provide the best the best level of data and catch all kinds of errors in the medical record?”

His response compared medicine to retail, with medicine in a negative light. He mentioned plasma screen televisions and computer assisted advertising and then concluded, “I applaud you for what you (are) doing with limited resources to try to help your family, but I am committed to making sure we have a foundation available so that clinicians on their own and by themselves and amongst themselves can start to have those kinds of transactions captured.”

I did not see patient access to the EMR addressed within his answer. I was a widow fresh from the graveside asking questions that affect the lives of us all. I was not supposed to be there. They were having a ball and I was Death walking among them.

I should have quoted Poe: “Even with the utterly lost, to whom life and death are equally jests, there are matters of which no jest can be made. “

The CMIO speech lasted about thirty minutes. After the speech we had a very nice lunch. They were happy to see that I wanted to stay for some of the after-lunch sessions. I got to hear quite a bit more about CDS, EMR’s and Meaningful Use. I heard quite a few folks mention they used Cerner systems. My ears perked up, as I had attended the Meaningful Use Summit at Cerner in June and had gone through their virtual tour of the Cerner EMR system. As the folks from MedStar began discussing the subject of making the EMR more patient-centric, I mentioned in the open Q&A that Cerner’s system could allow for a visual avatar to be incorporated to the functionality of EMR. An avatar, be it an actual photo of the patient or an image chosen by the patient, is very important in creating greater visual memory. I further added, “Why do you think Facebook and Twitter are so successful? They do not take our faces away.” One of the CMIO’s responded that that function had been turned off within their system.

I remembered when I was seeing all the amazing abilities of Cerner’s EHR/EMR systems I asked if any hospitals were doing these patient-centered things. They responded, “Yes, if the client decides to implement that feature.” “So, that client would be the patient?”, I asked. The really nice folks Cerner paused and looked slightly concerned. “No--the client is the hospital.”

That is the wrong answer. We are the clients. We are the end users. We are all patients in the end. And although it was meant to display respect, I am not a special guest. I am a patient, and we are refusing the one-off part. We want to be part of the cast. We want to be a ubiquitous part of every panel and every conference. Someday, I want to stand beside Ted Eytan, Trenor Williams and Gerard Burns and together say “Remember when it was unusual to have a patient on a panel?”

Meaningful Use, Patient Access and Mask of the Red Death

View more presentations from Regina Holliday .

"Would you eat off a toilet?

"Are you alright?
Originally uploaded by Regina Holliday

Have I mentioned that the mural painted on the back of a gas station? The mural  73 cents resides on the back wall of the BP gas station at 5001 Connecticut Ave. Yep, it is a BP gas station. The owner is a wonderful man named John Conner. He gave me permission to paint 73 Cents without ever seeing a design sketch. I began to paint on June 23, five days after Fred died. At first I worked in very short shifts. As the summer progressed and my painting shifts grew longer, I drank a lot of water. It wasn’t long before I needed to use the restroom. Of course, I was not going to use a gas station bathroom. I have been in many service station bathrooms in my life, and it has usually been a very unpleasant experience. John called me out on my prejudiced attitude. He asked, “Have you seen my bathroom?”

I could not believe it. The bathroom in the BP gas station at 5001 Connecticut Ave. is beautiful. The fixtures and paneling are all made of stainless steel. The countertop is the deepest blue with specks and sparkles of gold. The floor is ceramic tile. In my experience it is always spotless. It looks like it should be in a fine hotel. John believes in treating his customers with greatest respect, and it shows.

With this lesson in mind, I visited the bathroom at the Sheetz Station in Hancock, MD during my family vacation. It was a functional bathroom, also unisex like the bathroom at the BP Station in DC. It was a little dirty, but I was pleased to see a note placed above the mirror with the following statement.

“WE WANT YOU TO BE SATISFIED EVERY TIME YOU VISIT SHEETZ, SO I PERSONALLY PROMISE THE CLEANLINESS OF ALL SHEETZ RESTROOMS. IF THEY’RE NOT TO YOUR SATISTFACTION, OR IF YOU FEEL THERE IS ROOM FOR IMPROVEMENT, PLEASE CALL ME TOLL FREE AT 1-877-4SHEETZ OR EMAIL ME AT SHEETZ.COM

-Steve Sheetz, Chairman"

Not long before reading this I had painted a picture called The Onion and The Orchid. Not long after seeing this I wrote the blog post of the same name. I explained in that post that an onion letter is a letter you write when you have a bad experience with a business. An orchid letter is written to a business that exceeds expectations. I emailed Mr. Sheetz. Guess what? He emailed me back the very next day.

At this point you might wonder why a medical advocacy blog is writing so much about gas station bathrooms. It is simple really; we expect gas station bathrooms to be a little dirty, and in juxtaposition we expect hospital bedside tray tables to be really clean.

I am sure many readers of this blog are familiar with the rolling adjustable table used in hospitals for the food service. Perhaps they have even seen it used to hold prep supplies for a dressing change of a surgical wound. I was astonished when I saw the other way it is used. If a patient is incontinent the bedside table becomes a changing table. Each hospital may use different supplies. Some use adult sized wipes and foaming soap. Some facilities personnel use piles of white washrags and throw the rags in the soiled linen container. I was astounded as I was instructed that this was the proper way to do a change. I have worked as a preschool art teacher for many years and we would never use a changing table to feed a child.


I focused much of my advocacy on records access. Yet, when Institute For The Future created a visual competition called Bodyshock the Future, I thought I must address this issue. My entry is called Would you eat off a toilet? I created a painting called Are you alright?. This was the euphemism a nurse used to ask my husband if he needed a bedding change. I wrote more in depth about that in the post Code Brown.

This painting looks very different than my regular work. The colors are the bright tones of the 1950’s. I was trying to show the danger that lurks below the pleasing surface. Everything seems slightly disjointed and disturbing in the piece. But I really love Fred in it. I got his eyes perfectly. Those are his quiet pleading eyes. Those eyes are saying, “Help me, please.”

Well, I will try to help other patients and caregivers by spreading awareness of the multiple uses of that bedside table. After I tweeted my entry to BodyShock The Future, my friend Peter Amsel, better known as the crazycomposer on Twitter, pointed out that Mythbusters had already proved that a toilet seat is cleaner than most surfaces in a home. I loved his comment, partially because when Fred was hale and hearty we had watched that episode as a family. The main reason I thought his comment was so apt was because it proved the need for greater awareness. The toilet seat is as clean as it is because we clean it with the knowledge that it is a toilet seat. But when I floated this art awareness proposal around to my friends, some of whom are doctors, none were aware of the dual use of the table. We need to know. We need to know so we can protect ourselves.

All of this brings me back to the email for Mr. Sheetz. He said:

“I thank you for your ‘onion’ letter and I apologize for the conditions you encountered. We will work to make it better and hopefully one day we will earn an ‘orchid’ letter from you! I’m very familiar with this store because it’s one of the only ones in the company with one restroom for both males and females, a situation I don’t like. We can’t expand, as we would like to because of zoning issues so we have to live with the current state. But believe me this is no excuse for the conditions you encountered. As I said we will work hard to make it better!

I read your blog and found it very interesting. You are a very talented writer as well as painter! You touched a chord with me because my brother was diagnosed with kidney cancer in February 2006 and died August 21st, 6 months later. I spent a lot of time with him at the Cleveland Clinic and really feel we had great care, unfortunately it was stage 4 when it was caught and the only hope at that point was ‘trial’ drugs.

Once again I thank you for taking time to write.”

I wrote an onion letter to Fred’s first hospital, the one we stayed in for almost four weeks. They wrote back two months later. They said they would use my many comments as educational opportunities for staff. They had excuses for their behavior in virtually every instance including the poor communication about my husband’s bedding changes. They did admit, upon reflection, that they regretted they never had a family meeting with us.

I went back in person on May 14, 2010 and told them of my advocacy. I encouraged them to place “Speak Up” patient advocacy signs throughout the facility. The customer service representative took my name and number and email.

I am still awaiting a return call.

What does a Sheetz and BodyShock the Future have in common? They are both trying to harness the power of communication. The BodyShock competition gives us a reason to read about brilliant visual ideas that could change the future of medicine. Sheetz believes so firmly in their customer relationships within new media that the president responds to emails from consumers. They both get the idea that future is about transparency, relationships and communication. They get the power of social media.

I hope you can vote in the upcoming days on my entry. We can change things if we are all willing to speak out.