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Sunday, January 31, 2010

Rosa Parks in Health Care

In December 2008 and January 2009 there was quite a bit of controversy brewing over the implementation of an electronic transfer record in Washington, DC. A lot of the arguments used to decry or promote the new system would sound familiar in our current medical community. The paper transfer has been used for years. The poor, the illiterate and elderly were comfortable with the current system and would not be able to understand a new electronic version. Those favoring change pointed out the favorable outcome of less wait time, faster processing and ability to aggregate data. All these argument fluttered around us, as we said goodbye to the paper version of the National Capital Metrobus transfer and hello to the Metro Smartrip Card.

Within medicine, we are living in our time of controversy. People are taking sides: supporting some types of reform and not others. On January 28th 2010, I attended a meeting of a Health 2.0 group. This was the "8th month" check up. Most of us had met before, on May 27th 2009. At that meeting, we decided real-time patient access to the medical record was a first priority in attaining better medical outcomes for the patient and family. We spent the next eight months working feverishly toward that goal. We painted, spoke at medical conferences, gave interviews and wrote numerous blog posts on the subject. It was now time to work on strategy for the next year.

The definition of "Meaningful Use" and implementation of HITECH policy was being decided upon while we spoke. If patient access to the EMR/EHR was going to be a reality, we would need to do everything we could in the coming weeks to draw attention to the need for a patient's right to access his own data. We decided to speak to our congressmen and try to meet with staffers on the Hill. But we also decided we needed a symbol. We needed our own ribbon or armband. We decided the perfect symbol for our current lack of access is an empty USB on a Lanyard.

After proposing this idea, we heard of several companies who are encouraging patients to wear necklaces or lanyards with enclosed personal health records. These systems would function like med-alert bracelets. They allow you to fill in fields of data and create a stop-gap solution in a world without data transfer. Our Health 2.0 group decided to promote a symbolic use of an empty USB. We are encouraging patients to go to their doctor and request a medical record down-load onto the USB device. Our hope is twofold. We want doctors to view the patient's information as belonging to the patient and to consider the adoption of an electronic medical record that is patient accessible.

We may be asking a lot of a little USB, but symbols are very powerful.

That brings me back to the bus. I often compare the patients' rights struggle with the civil rights era. Imagine the civil rights era without Rosa Parks. Imagine a world where she gave up her seat and moved along quietly. Would that world be the world we live in today? I am going to ask you to do a very scary thing. I am going to ask you to take a USB to every medical appointment and ask to get a copy of your record. I am asking you to do this even if the answer will be no. This may impact your life and friendships. This may effect your work and standing within society. Sometimes we need to stand against oppression. Sometimes we need to sit in our seat until the authorities take us away.

I like to ride the bus. I like all the wonderful people I meet. I know that a lot of us are broken and sad. I see the elderly stumble and I see the homeless man reach out a helping hand. I see the young urban college student and the working poor. I see all of us as the patients were are in the end, deserving of respect and compassion. Seeing this, I ask of you, do not give up your seat at the table. Demand access to your electronic medical record.

Saturday, January 23, 2010

Seeing the Light: Social (Media) Justice Camp

Seeing the Light
Originally uploaded by Regina Holliday
When I was in sixth grade, I had the pleasure of attending a newly constructed middle school. It was designed to create the best learning environment. Nothing would distract us from the written word; and so, they created a building without windows. Oh, there were these thin light aperture areas at the top of a wall. (We needed to get some sunlight after all.) But we had no view of the outside world. It felt like a prison. Children really like to see out. They will climb on top of tables or shelves to see the world around them. As adults, we often let the world grow narrow and only see what effects us directly. Thank God, there are folks among us who open windows in the prison of our life. I met some of those folks at Social Justice Camp DC last weekend.

Social Justice Camp DC was a two day event. The event was created to bring together artists, activists and advocates. It was promoted on Social Media sites such as Twitter. The first night 16 presenters spoke on a wide range of topics. Each had 5 minutes and 20 slides. I was one of the 16 presenters. The energy in the room was amazing! We learned from about adult literacy rates in DC and how adaptive technology can serve our citizens. We learned what food insecurity really means. We discussed Aids/HIV and teen pregnancy. Homeless issues were on the fore-front with three speakers addressing the topic. We learned about valiant people who fight everyday to uphold policies and safety nets for our most troubled and endangered populations. DC Urban Debate League was there, promoting debate as a way to overcome barriers in society. David Hale gave a great explanation of the meaning of social justice using Japanese characters. Everyone in the room was there to spread the word. Everyone came to help create social justice.

Why was I there? Of course, I wanted to speak up about art as advocacy. I also wanted a large crowd of people to focus on the patient as a person. The most import reason for being there was to open windows. We are all interconnected. We all effect each other. Just like organs in the body, if one part stops working the whole can fail. How can I promote access to the written medical record, and not try to address literacy? Could I have communicated the need for patient access without a background in high-school speech and debate? If I were not aware of adaptive technology, would I have been as offended at the archaic systems hospitals use? For that matter, if I and my children were food insecure, could I "waste" my time fighting for change?

Social Justice Camp was amazing in another way: it was social media in real life. We were not only brought together via the internet, we behaved as if we were online. The second day was an unconference. We suggested panel topics and went to any topic that interested us. People were free to contribute ideas or just listen. Any one could come or go at anytime with no offense taken. It was like tweeting in person. Due to this informal organization, I got more out of this conference than any other I have ever attended. I learned so much I really cannot explain it all in a blog post, so please visit the Social Justice Camp Site at

On Monday, I will go back to sixth grade. I will begin working with students at Deal Middle School on series of murals addressing social justice issues on six continents. I hope to open a few windows through art and advocacy. These paintings will placed high the walls of the school hallways. They will be "light apertures." They will shine, as they make us hope for a better world.

Thursday, January 21, 2010

A Stroller as a Shield

Originally uploaded by ThroopCat
My youngest son is growing. He is getting to big for his little socks. I soon will box them up for charity. He is growing too tall for his pants and his long sleeves are now mid-length. My little Isaac will turn four in a few days, and he can no longer wear his 3-T clothes. He can no longer wear the clothes his father dressed him in; and so grief ebbs and flows.

The connections to that time and this time are falling apart. They swirl like leaves among the living. I push Isaac, like the babe he was, down the avenue. I have a stroller for a shield.

When Fred was sick, I would drop the children off at school and then rush to the hospital. I would still have the stroller with me. I would push it bravely down the hall of oncology. I would feel it protect me. It would tell the world, "See, we are young. We have a little one in a stroller. Daddy can't be dying." It would sit empty, glaring at the Doctor in the room; its message clear: "Are you doing all you can for this young Father?"

As Fred's world grew smaller, and he could not stand nor walk; he just had room for Isaac. Isaac could lay beside him and cuddle. Isaac could still play silly finger games with Daddy. As Fred grew drawn and gaunt, Isaac would still play and run beside his bed. Poor ten year old Freddie would be so scared and sad he could barely look at Daddy. Isaac would be there; playing Brio Trains next to a catheter bag.

Isaac sometimes asks if Daddy is still dead. I say, "Yes, Isaac he is." Isaac sometimes plays the finger games with me. I am not as good at it, but I try. I try to keep the memory crisp. And I cry. I cry about little socks and strollers. I cry for a time that is lost and can never be regained.

Wednesday, January 13, 2010

The Dangers of Jargon

Originally uploaded by Teskie
I used to love selling games to people. It is so much fun to play games, and it is a great way for a family to come together and communicate. One of my favorites was a card game called Discombobulation. This was a great game with wonderful math skills and quirky discombobulation cards that encouraged you to start listing words within a specific category. If I played nice with children, I would come up with a category like Pokemon characters. But if I were playing to win, my category would be artistic terms for the color yellow. On my turn I would yell out "Hansa yellow medium!" The children and other adults would be stumped. I would win the hand! I also loved another card game called Thing-a ma-Bots. In this game you had to name robots and remember the names you gave each, as well as the names other players assigned. In a friendly game I would call all the robots names like "Crazy Hair Guy" or "Electro Man." If I wanted to win, I would name the robots "Semiotics" or "Cognitive Theory." I found children could not remember these words, as they had no exposure to them. Now the danger in this way of playing is people don't want to play with you. No one likes feeling stupid or ignorant. Often when you throw jargon into conversations with players or people you make them feel discombobulated. That is, they feel confused and frustrated. Kids are great at showing you their reaction to this feeling: they throw their cards at you. Adults don't say anything at all. They often smile and nod and feign understanding.

Now what does this have to do with patients' rights and access to data? One of the key reasons medical professionals give for refusal to complete medical data record access is (drumroll, please) we wouldn't understand it. If you have read a medical record in its entirety you know it is filled with a lot of legalese as well as detailed medical terminology. You probably had to look up quite a few words on the internet in order to understand the whole document. That is one of the beautiful things about access to a written record: you can look things up. You can ponder and research well into the night the meanings of the words before you. Juxtapose that situation with a patient being informed verbally of their test results. Unlike children, adults often smile and nod when being told results they don't understand. I applaud the brave folks who say "Wait a minute- I did not understand."

Yesterday I was so pleased to read an article in The Washington Post by Robert Barnes entitled "Justices learn a new word from a law professor." In the article it recounts a lawyer using the word "orthogonal" in describing and argument he was making. Justices Roberts and Scalia both questioned the meaning of the "new" word. The law professor explained its meaning and and called it "a bit of professorship creeping in." Why am I so happy about this small article? It shows that even the most respected and educated among us do not know the meaning of every word that comes by and it is important to ask questions.

Technical knowledge can be a great boon to society if we can use it in a way that informs instead of clouds discourse. When Fred was ill I visited a really nice counselor who specializes in bereavement and cancer care. She was giving me information on accessing data and fighting the system. While I was in her office to get pointers I noticed a basket of pastels on the table. They were very nice, artist grade pastels. She said she uses them for art therapy. I was taken aback. I asked "Isn't that a true cadmium?" She looked at me slightly confused. I pulled the offending red pastel out of the basket. It was a true cadmium, not a hue. In tiny print the label read: "Keep out of reach of children, known to cause cancer." The counselor was aghast. She had no idea the art supply was toxic. She had moved out of her knowledge comfort zone and into mine. She had entered the world of art jargon.

When we discuss the give and take of data access we must keep this in mind. The patient/caregiver and the medical professional both have their spheres of knowledge and each can learn from the other. Jargon can be a wonderful shorthand with fellow professionals and a dangerous form of communication outside of that group. When Fred was first diagnosed and I was deeply invested in study of RCC I would often talk to people about RCC and potential treatments. Once I spent five minutes talking to a friend about RCC before she stopped me with a question. She asked "What kind of cancer does your husband have?" "He has kidney cancer," I replied. From that day onward I would hardly use the term RCC, because I discovered non-medical people had no idea what it meant. I had fallen victim of jargon.

By the way, orthogonal is defined as right angle. Unrelated. Irreleveant.

Let's make sure in the coming months as HITECH policy is implemented, that patients access is not deemed orthogonal in the creation of a working electronic medical record.

Tuesday, January 5, 2010

Code Brown ("Subjects relating to defecation are socially unacceptable...")

Medical Facts Mural
Originally uploaded by Regina Holliday
Have you ever potty trained a child or a puppy? It can be a long and drawn out process. You might have a sticker chart or prizes for every time your little one succeeds. You might use shame for every time they do not. I never understood that phrase "rubbing your nose in it" until I saw a friend potty training her dog. The shame of incontinence is instilled at a very young age.

And the shame does not stop there. Children grow up aware of society's aversion to talking about bowel problems or urinary mistakes. I still remember "pee" boy from third grade. This unfortunate child had told the teacher he really needed to go the restroom. She did not let him go. He finally could not hold it anymore and urinated all over himself and his seat. For the rest of the year he lost his name; he became "pee" boy. And so the shame goes on.

While I was in Navy boot camp in the summer of 1993, I heard a very important lecture. It was a week and a half into Boot camp and the CPO wanted to talk to us girls about our bowels. We sat in silence. She said, "I know a lot of you have changed your diet and are frightened. You may not have had many bowel movements or have had none. This is dangerous. If you do not have a bowel movement you will become impacted, and could end up needing surgery. If you have not had a bowel movement in several days, please report to the doctor." I was so glad she spoke to us. I had not had a bowel movement in two weeks. I was embarrassed and did not know what to do.

When Fred was ill last spring I remembered the CPO's lecture. Fred was in a lot of pain and the Doctor prescribed pain medication. He kept taking the pain medication and became constipated. He was very embarrassed. I urged him to go back to the doctor about the constipation. By the time he went back to the doctor he was more concerned about the constipation than the pain. She gave him a laxative, then more pain medication then more laxative... By the time Fred was in the hospital he was on four kinds of pain meds. and four laxatives. We had managed to get him regular again prior to going to the hospital. When the nurse took his medication history she was only interested in the prescription drugs. She said they would handle laxatives if needed. Fred had been stable on the four laxatives. They stopped them all. He became constipated.

Next came incontinence. If you read the entry about incontinence from Wikipedia it states,"Fecal incontinence is the loss of regular control of the bowels. Involuntary excretion and leaking are common occurrences for those affected. Subjects relating to defecation are often socially unacceptable, thus those affected may be beset by feelings of shame and humiliation. " Fred indeed suffered "shame and humiliation" with this new condition. I would even say he worried more about this element of his condition that he worried about the cancer itself... No therapist ever comes to your side to talk about this shame no one explains the process of why this is happening to your body. No one wants to talk about it.

When I was with Fred I did his bedding changes when he had a movement. When I was not there, I had to depend on medical techs. and nurses to do this duty. I would sometimes arrive and find him sitting in filth. In one case a nurse had just been by. I asked her why hadn't she cleaned him up. She said she had asked him if he was all right and he had said he was fine. "So," I said to the nurse, "'Are you all right?' means "Do you need a bedding change because you have had a movement?" She said yes. I told her the patient doesn't understand this. You need to be more clear.

Recently, I had the opportunity to read Lisa Lindell's book 108 Days. It was a very fast read about the 108 days she took of care of her husband in a hospital after he was severely burned. She went into detail about infection control, lack of communication and incontinence. She called the situation Code Brown. She expressed her outrage at how long her husband would have to sit in his own waste before someone would come. On pages 200 and 201 she recounts two hours of suctioning blood from his mouth while trying to clean up diarrhea. She sums it up pretty well in this sentence directed at a Doctor, "Why do you people do this to him? I want the CEO of this hospital to lie helpless in burning diarrhea for two hours, and I want to pinch his cheek and tell him he's getting the best f---ing care!"

And so the shame goes on. When Fred came home to hospice care I had four industrial bedding chucks. One would be under him, one in the wash, one in the dryer and one ready to go. I would spend all day running down the hall to do get laundry and come back as quick as I could to take care of Fred. The day before Fred died the hospice nurse and I spent most of her visit just trying to do a bedding change. Fred worried so. He asked me, "Reggie, how do we keep doing this? I hurt so bad. I can barely roll over to help you." He hurt so much, yet he worried about me.

When I was painting the Mural in August, a woman came up to me and showed me pictures of the sores her Mother got from lying in filth while hospitalized. The pictures were horrible. It is shameful to be left in a pool of your own waste and it is dangerous as well. This poor mother spent her last days with massive bedsores and lost part of her foot, due to the ravages of laying in fecal matter. But no one wants to talk about it.

If I have done anything with this post, I hope I opened a few eyes. I hope you are more willing to talk about such a socially unacceptable topic with your family. I hope we can help deal with the shame together.

One day back in third grade, the gym teacher had the students choose a partner for dancing. I choose 'pee' boy. I got made fun of for it, but it was more important to help him in his shame.

Sunday, January 3, 2010

A Blog for "Ten"

Doctor Who- "Forest Of The Dead", 2008

The Doctor: "You can let me do this."
River Song: "If you die here, it will mean I never met you."
The Doctor: "Time can be re-written!"

River Song: "Not these times. Not one line, don't you dare! It's okay. It's okay. It's not over for you. You'll see me again. You've got all of that to come. You and me, time and space; you watch us run."

The Doctor: "River, you know my name. You whispered my name in my ear. There is only one reason I would ever tell anyone my name. There is only one time I could."

River Song: "Hush. Shh... now, spoilers."

That was the scene that brought me back to Doctor Who in the summer of 2008.

I watched Doctor Who a lot as a youngster. I watched every episode of the Tom Baker and Peter Davidson years on my local PBS station. Time passed and life grew busy. I fell out of touch with Doctor Who. In 2005 my loving husband Fred, told me it was making a comeback on the BBC. I think I said, "Oh, that's nice." I was too busy with work and child care to worry about a fictional character on TV. Isaac was born in 2006, and now I had absolutely no free time. A new fellow named Will was hired at the toy store. He was always making comments about Who. I would listen politely, and then go on to more important things. So the years ticked by... unnoticed.

In July of 2008, I was home alone. When Fred and the boys were in the house it was so noisy. When they would leave for a weekend at their grandmother's house, I would leave the TV off and read in my spare time. For some reason, this time I turned to the Sci-Fi channel and saw the second part in a two-part episode of Doctor Who. This wasn't just any old episode. I had grown up watching the Doctor. I knew the mythos. No one knows the Doctor's name, No one. Who was this woman? Was this the Doctor's wife? I sat in rapt attention as the drama unfolded. Tears ran down my face as I watched her die. I was so touched and inspired.

I called Fred. I was so excited I was talking a mile a minute. I described the show and asked him questions. We agreed we would watch the entire series starting with the episodes from 2005. Fred chuckled at my happiness and said, "Reggie, I haven't heard you this excited in years."

Fred, Freddie and Isaac came home and we began our journey to the new world of Doctor Who. Each night we would watch an episode to try to catch up. It was so fun. Fred and I were really enjoying watching the series. Our joy spread to the children. They began to watch and play-act Doctor Who. It wasn't long before Freddie decided his birthday party theme would be Doctor Who. We agreed our family Halloween costumes would be Who-inspired as well.

Our friendships were affected by this new interest. I got to know Will from work much better as we had numerous conversations about the Doctor. He told me different ways to research the show online. I had never ventured out much on the internet; but with this interest, I learned about WIki's and youtube and Google search.

After Fred started his semester at AU, we went to a faculty party. There we mentioned our fan status. Fred didn't know many people at the party. When we mentioned Doctor Who, we were introduced to Michael and Rebecca. Michael worked in the Literature Dept. at AU and Rebecca was his wife and they were great fans of Doctor Who. I mentioned we wanted to have a Doctor Who Birthday Party for our eldest. Would they be interested in helping? Sure, they said. I could Facebook message them. I walked away a little apprehensive. Now, I would need to learn how to Facebook.

Planning the Doctor Who party forced me to become familiar with Facebook. I found it be a great resource for coordination of such a large undertaking. There would be 70 children at the party, half of them special education students. I would need many adults to help coordinate activities. I also got in touch with people I had known through the years. These were people I thought had the skill set to help with such a complicated party. We had been out of touch,but through the internet became close again.

The party was amazing and it was a magical night. It all came together so well. This was a party for a Time Lord, and anyone in time or space was invited. The children and adults had a ball dressing as their favorite characters. So many wonderful people came to the party.

Our interest in the show did not stop with the party. For Halloween we donned costumes once again. I was a Dalek. I designed my costume so a Razor scooter could fit underneath. If you happened to be on Connecticut Avenue on October 31st 2008 you would have seen a Dalek rolling by... Freddie was the Tenth Doctor, and Isaac was Captain Jack Harkness riding a Face of Boe tricycle. Fred was our camera man. I think about four people recognized our costumes....

After Halloween, we were still interested in the show. Freddie wanted to make Doctor Who action figure movies. Fred and I agreed to take our Christmas money and get a family video camera. So at Christmas 2008 we filmed the boys opening their Doctor Who gifts, with Fred's running commentary in the background.

We also heard that David Tennant would not be playing the Doctor after 2009. There would be five specials in 2009 with Tenant; then he would regenerate. Fred and I bemoaned the fact we became obsessed with the show in a year with so few episodes. How would we make it through 2009?

That seems so long ago.

When Fred was sick, a lot of people said I should pray for a miracle. What people didn't understand is we already had a miracle.

Why did I watch "Forest of the Dead?" I saw a relationship end in death, with a spouse powerless to stop it. That moment so moved me it changed our life. Fred and I watched the entire series in reckless joy. He said it felt like we were dating again, young again. I learned how helpful Facebook could be in organizing birthday parties or ... cancer care. I learned how to research The Doctor on the internet and would use that knowledge to research real doctors on the internet. And Will, that Who fan from work:? It turns out he could teach me how to create a blog called Regina Holliday's Medical Advocacy Blog. Michael, the friend whom we met at the faculty party? You might recognize him. He is the waiting guest in the mural. He came every week without fail. He came to every hospital and to hospice and to home. He was with Fred the day before he died. He was the last friend Fred ever spoke to.

We were living in our miracle.

Last night on BBC America, The Tenth Doctor died. I cannot remember any other Doctor who knew he was going to die for such a long time. 2009 was a year of hospice care for our show and for ourselves. But he marched bravely to his end. He said goodbye to all his friends. Many folks on Twitter found this maudlin and overly sentimental, but it rang very true to me. I saw it happen in real life. The Doctor's last line was also very truthful: "I don't wanna go."

The other day I found a drawing I did in sixth grade. In the piece, my name forms the image of a space alien. Surrounding the alien is the Doctor with his TARDIS, a poster from the show V, and a hospital standing high in the sky with ambulance ships flying in. A shuttle with a sign that says "Just Married" flies by. I drew this in 1986. As the Doctor would say, time is in flux. Some things can be changed and some are fixed points. It is hard to see God's plan when you are living in it. Just like River Song said in "Forest of the Dead", everything was leading to the library. To her time, to this moment. Whether it is a drawing from sixth grade or a summer spent watching Doctor Who, these moments add together and prepare us for just one time. For that time, when we just don't wanna go.