Subjects

When I attended e-Patient Connections last fall I met an amazing and diverse group of people.  There were techies, patients, representatives of the pharmaceutical industry, doctors and even a comic book writer amongst the attendees and speakers.  I painted the entire time I attended the conference and it was the first time I painted onsite.  I must thank Kevin Kruse for his great suggestion that I paint.  While I painted in conference attire, a very nice man introduced himself as Craig Lipset and he told me he worked for Pfizer.   He added that Pfizer had an office in New York that showed art on a regular basis and he would inquire to see if they could show mine. 

A few weeks after the conference, Craig contacted me online to inform me, alas, the Gallery was booked through 2012.  And that is all I heard from Craig until the night he attended The Walking Gallery on June 7^th.  He was quite taken with the many wonderful jacket stories on display.  He asked if I could paint him one as well.  I was feeling quite joyful and tired that night and smiled at him, telling him of course I would paint a jacket for him.

A few weeks later he emailed me asking if the offer was still on the table, or had I offered to paint while infused with the good intentions of wine and exhaustion.  Once again I told him, Yes, I will paint your jacket.  

But which story should I tell?

Should I tell his patient story?  Should I tell the world about his life as new father in 2006? He had a lovely baby and a very bad cough.  Now, many new parents do not get enough sleep, but Craig coughed so much he could not lie down to sleep.  After visiting a doctor and undergoing 9 months of tests: 2 chest CT’s, 2 PET scans, 2 Cardiac MRI’s, 3 pulmonary function tests and 3 holter monitors.  Craig was diagnosed with pulmonary sarcoidosis.  He now has 50% lung function and is fairly stable. 

Sarcoidosis, that sent chills down my spine.  I painted a Walking Gallery Jacket for Leroy Jones depicting his mother’s 20-year struggle fighting sarcoidosis and was aware of her eventual death from the disease.  I knew Craig had quite a personal story to tell.

But, that is not the focus of this jacket.  Instead of focusing on his personal story he decided to focus his jacket in engaging patients as participants.  Craig’s work has been about enabling two-way sharing of data with patients for research.  As Craig states, “We have historically treated the patients that participate in research as “subjects”- we look at them, assign them a random number, we remove any identifiers and we extract data from them to put into a data base.”

This is Craig Lipset’s Jacket: “Subjects.”

This painting is homage to another's work entitled “The Accolade.” Edmund Blair Leighton painted "The Accolade" in 1901.  He was an English painter that specialized in the medieval genre and his painting has become synonymous with the process of being knighted.  In Leighton's painting, a Queen with sword in hand bestows a knighthood upon a kneeling subject.

In “Subjects,” the relationship has changed from a depiction of ruler and subject to an exploration of care among equals.  The Queen has dropped her sword to her side and her other hand rests on the shoulder of a patient as she looks at him at eye to eye.  Other patients/subjects gather round and each appear to be offering a green button to the Queen.

This is the Green Button Download.  This is the concept that I, the patient, can share whatever health information I want.  It can be scrubbed or not.  I share this with you to help others and aid in the aggregation of data.  And all I ask of you, is that you do the same for me.  I ask you to share the data and conclusions that you have reached.  I ask that we come to the table as equal partners in patient care and I will share with you.  I may be dying, I may be well, but let's crowd source this.  Let's put this in the cloud, let's open up my data set and that of all my willing brothers.  Let's code-a-thon tell dawn and make greater strides in hours than is often seen in years.

Do you see that dawn breaking through the stained glass within this picture?  Do you see Craig, sacred and still, holding a pill where his heart resides?  Here is the new tomorrow shining through the colors of the rainbow button initiative. Here the blue button combines and grows.  It spawns green for sharing, red for selective privacy and white for directing your data.  Where this light falls, health is revealed and shadows melt away.

We are no longer subjects.  We are partners in care.  Let patient’s help, that is all we ask. 

SOCIAL media JUSTICE

My husband Fred had a favorite story about John Ford, and Steven Spielberg told the tale. The story was an account of the day that Steven Spielberg met John Ford.

The story went something like this. Steven was really young and had been making a few super 8 movies and he had the opportunity to meet John Ford in his studio office. After waiting for about an hour, Mr. Ford came in and Steven Spielberg began to speak with him for a few moments. Mr. Ford said, “So, you want to be a picture maker.” John Ford then gestured at a series of pictures on the wall. He asked Steven to describe what he saw. Steven started to describe the Native Americans and objects within the picture. That was not what John Ford was looking for. “No, no, “ he said. “Where is the horizon?” Steven said that it was at the top of the frame. Mr. Ford asked Steven to describe the next picture. Again Steven began describing the Calvary and elements, and again Mr. Ford was frustrated. “No, no. Where is the horizon?” Steven looked and said, “It is at the very bottom of the painting.”

John Ford said “When you are able to distinguish the art of the horizon at the bottom of a frame or at the top, but not going right through the center of the frame, when you are able to appreciate why it is at the top and why it is at the bottom, you might be a pretty good picture maker. Now, get out of here.”

That is a great story and Fred would tell it to his college film students and I would tell it to my pre-k art students for years to come. I loved that story because it makes it very clear that the angle from which you view things has an effect on how you view things.

This idea was reinforced yesterday at Isaac’s follow-up doctor appointment at the new Kaiser Permanente building by Union Station. He was meeting with a Nutritionist and was sitting in the waiting room section for internal medicine. Within the space, a kiosk had been placed to go online free of charge. Isaac walked over. He was very excited to find an accessible computer, but was quite disappointed when he tried to use it. The angle of the screen was set and fixed at an upward facing position. Isaac tried to adjust it as he would at home on our Mac, but the screen would not budge. He walked away his shoulders slumped.

Isaac had just been placed at the bottom of the frame.

I thought of all these things in relation to the jacket I was creating for Andre Blackman. Andre can be found on twitter as @mindofandre . He writes and speaks about the power of new media, social media, health 2.0, public health, mobile health and disparities. He sees a new future where the old tools of public health 1.0 are discarded and the power of Health 2.0 embraced.

So, I painted a new vision for Andre, a lady Justice for our time. This is “SOCIAL media JUSTICE.”

In this painting, an African American woman stands proudly. In her right hand she holds the scales of justice and in her left a suckling babe. A halo of binary code encircles her head and she is wrapped round within a golden cloth. Twisting around and behind her is a segment of film depicting icons from health, our life and social media.

Look at how she hefts the scales. This is not a dainty Roman deity with her hand lightly holding a tool of measurement. No, this lady hefts the scales as a weightlifter would, for justice is heavy. She looks unflinchingly down upon us, as she is slightly elevated within the frame. She is real and powerful. She is far removed from the artificial beauty that is often slathered on the faces of young women in our world. She is our future and represents all the wonderful regular people/patients who are joining a worldwide conversation on health.

The babe in arms suckles in contentment in his mother’s embrace. He feels safe and secure, held by an arm that so often holds a sword in other depictions of justice. Why a babe and not a sword? We must change the way view problems and populations. Our tangled healthcare web is not a Gordian’s knot to be sliced through. It is a tapestry, now tangled, that must be rewoven upon the loom.

What tools will knit our raveled sleeve of healthcare? Twitter, Facebook, e-patients, new apps, and old medicine are tools we use combined. We must activate doctors, playwrights, musicians and techies and splice them onto the same reel. That is how we heal the child. That is how we heal ourselves.

Only by working together can we create great change. By finding and embracing this concept of Justice, we can set a new horizon.

Patients bringing it all to the table...

Have you ever seen me paint in public? I am usually covered in drops and splotches of paint. My hair is a wild, wind-blown mess. My rolling shopping cart is parked beside me filled with brushes and the accoutrements of my craft. When carrying my supplies to the job site, I seem weighed down with the weight of the world, and strangers on the street often assume I am homeless. My canvas is usually a public wall on a city street. I paint beside grit and litter and a faint aroma of urine. What I paint is not always pretty, and neither are my surroundings. I take in this ambiance and a vision from my soul, and I smear them on a wall for all to see.

People stop. People stare. They ask me questions. Like a single rose growing in an abandoned city lot, I do not belong. When I painted 73 Cents, hundreds of people stopped by and asked questions. I would step off my ladder and explain the work. I would explain the importance of data access and patient rights. Those who questioned often apologized for their intrusion. I would tell them no, do not apologize. This is part of public art. This is part of discernment. Your questions inform the art and make it better. The best questions often came from the children. They would ask anything. There was no topic too personal or gross for a child to ask. The parents would often try to hush their inquisitive offspring, but I would just answer. I love the questions of childhood. Ah, to view the world as little children…

I have been thinking quite a bit about the child’s eye view of medicine and information technology in recent days. I have been especially focusing on the view of the child with special needs and autism.

A few months ago, Kevin Kruse invited me to speak at his conference e-Patients Connections. I knew of Kevin through his Twitter presence but also through his sister, whom I met through Twitter and Facebook. Kevin’s sister, Diana Kruse Sebzda, is an amazing thinker and writer on grief. We have talked on the phone about grief and social media, and she is a great friend. So when Kevin contacted me about speaking, I was already primed to say yes. But Kevin took it a step further and asked me to paint on site as well. He then proposed that we auction off the work to raise money for a charity of my choice. I knew at that moment what charity I would support and what would be the body of my speech. I would support the Ivymount School Model Asberger Program as my husband did, and I would speak of our son Freddie.

Do you know the wishes of your loved ones? Have you ever taken that advance directive conversation a step further and found out the in lieu of flowers of your partner/parent/child? I vividly remember sitting at my husband’s side and speaking about pallbearers and which memorial charity would Fred choose. He chose Ivymount. He picked the school that helped our son and held his broken heart within their open hands. He picked the school that counseled and guided a child through the worst moments in his life and provided such solace in a time of great anguish. They did this for us, and they do it everyday. Everyday they help children who have been so hurt in this world. They take children who arrive in pressure blankets and sound canceling headphones and guide them to a place of peace where they can learn and flourish. They take children who come without friends who have been taunted and ridiculed and help restore their self-esteem. The teachers and staff of Ivymount remember what it feels like to be a child. They remember the battleground of the school yard. They know the importance of being allowed to join the play.

So I said yes. I would speak, and I would paint. I would paint a playground. And I would speak of Freddie.

This is a closed data loop.

In health information technology circles we often speak of closed data loops. The patient’s medical record may be easily viewed by the doctor or institution, but not by the patient. I often think of hoops in relation to this discourse. I think of circuits, rings, circles, loops, and Galilee. I even wrote a poem about it called “Wheals on the Bus.” In this painting I am trying to convey the awful isolating power of the closed data loop. The doctor/child is very self-satisfied. She sways within her hula-hoop listening to her headphones. Her eyes are closed, and she is smiling. The patient/child looks on as if a sorrowing icon. His clothing is half patient gown and half Roman column. He is fixed in place with no avenue for communication. The sky above is covered by a glaucoma-filled eye. The all-seeing eye is blinded, and the loop remains closed.

This is an example of point to point communication.

So in this piece we have the concerned patient/child looking into the distance. She holds her sad small PHR (personal health record) in her hand. It looks like a toy silo with a cute little toy tractor. It is a toy; and good for pretending, but it does not communicate within the larger HIE (Health Information Exchange.) To the patient/child’s left two doctor/children are engaged in a rousing moment of double dutch jump roping. Their information surges back and forth within a double helix made of pills and pixels. In the center jumps the joyous hospital administrator. She jumps happily within the spinning data loops as other executives wait their turn.

And there my vision stopped and the conference itself began to affect the work. For as I painted, Sona Mehring, founder of Caring Bridge, began to speak. She gave a very informative speech about the power of Caring Bridge to help families and caregivers during a time of crises. She went on to explain the importance of utilizing the service as no one posts this kind of information on his or her Facebook status line. It was instantly incredulous. I was a no one, I suppose. I did not use Caring Bridge during Fred’s struggle with cancer. This was a purposeful choice. I did not want to separate our little family tragedy from the news feed or from the friend feed. I wanted all of my friends with me on this journey. So every night I posted a status line that told you about our medical reality. If you had looked at my news feed on June 17, 2009, it would have told of summer camps and Farmville. It would have had obscure movie references and talk of weekend barbeques. And you would have also seen:

“Fred passed away this morning. It was really peaceful. Joan held his one hand with Freddie. I held the other hand with Isaac. It was as good as it could be. As Freddie says, Daddy is no longer in pain. We will miss him. We will see him in Heaven.”

While I painted, I felt the power of the tragic stories told on Caring Bridge combined with the endless sharing of Facebook. I saw what could happen when you do not quiet sickness and death, but instead share the message far and wide. So in this painting Caring Bridge marries Facebook. They are zooming by in shiny, red car. Behind them trails a just married sign upheld by the Twitter bird. Also trailing behind are tin-can phones. Those phones connect you to social media. The administrators and executives waiting in line to play EMR double-dutch are communicating via these phones. They may not yet have grasped the importance of implementing a fully functioning and patient participatory EMR (Electronic Medical Record), but if social media is doing its job, with every post, tweet, or share, we are showing them there is a better way. And I wonder if you noticed the bridge in the painting is a modified image of the Key Bridge, because this is truly the key to making health care work for us all. We must have open communication at every step of the way.

This is the future of HIE...

The final painting has an unfinished look about it. This is a scene where doctors, patients, administrators and members of pharma all are holding up the play parachute. They are joyous. They are bouncing data balls into the air. Those data balls spell HIE. This is what a fully functioning health information exchange should look like. We should all be linked together in a circle: included, not excluded. The painting is unfinished because we are not at that point yet. These figures are still ephemeral, but they are holding up the parachute. Playing with a parachute is fun. It billows so nicely, and the silk is so smooth, but we should never forget the reason we have parachutes. Parachutes save lives, but only if you can pull the cord. A parachute that is packed away and inaccessible will not help as you fall.

This final painting in the series I began on the first day. There is an elephant in the sky. I painted this as Kevin spoke of the elephant in the room when we speak of medicine and compliance. That long-suffering elephant has been a beast of burden, hauling its stacks of medical records from doctor to doctor and from place to place. The elephant remembers how it has been treated and seems so gentle and quiet until it trumpets warning.

Well, if you haven't figured it out yet. I am trumpeting! I have hauled brushes and paints. I have carried reams of records. I am an e-patient. I am a mother, a poet, and an artist, and I am ringing the claxon. We will no longer be quiet. We will question like the mind of a child: always searching, always learning and bringing something new to the equation with every point we make.

I am so glad I was invited to e-Patients Connections. I am so happy that Kevin was brave enough to allow me to bring forth the view of the patient. I am glad I could paint just as well in a fancy dress within a large ballroom as I could on a city street. I proudly spoke before those assembled about my wonderful son and informed them about the amazing way he sees our world. I am thankful for Red Nucleus, the company who purchased the paintings. That money will help children lead a better life. I am also filled with gratitude for the amazing help I received from Pixels and Pills. Not only did they post an interview about my work--they also took the pictures of the paintings that were sold and gave them to me on a USB bracelet so I could write this blog. They were gracious and kind and incredibly helpful throughout the entire conference. I am also thankful for the amazing group who listened that day as I talked of despair and sadness, but also of love and joy. The room was filled with amazing advocates for participatory medicine. Some of the greatest voices working within the e-Patient movement were there such as Dr. Ted Eytan, Dr. Danny Sands, E-Patient Dave, Donna Cryer, Phil Baumann, Jane Sarasohn-Kahn, Liz Scherer, and so many more...

At the close of my speech I shared my poem “The Wheals on the Bus.” One line is “ARRA! Arise!” As I finished speaking, the audience did indeed arise. An amazing energy filled the room, and I knew the elephant had come into its own. We were all standing up ready to grasp the parachute and send the ripples far and wide. Now we must go forth in the world as empowered e-patients and change everything!

Check out this SlideShare Presentation:

E-Patient Connections 2010

View more presentations from Regina Holliday .

To Boldly Go Where We Do Not Belong

Painting at Holy Cross
Originally uploaded by Regina Holliday

I paint in public settings. Sometimes, I set up my easel on a busy sidewalk in front of a hospital and begin to analyze patient care using cadmium red. Or I create a beautiful and tragic painting on the back of a business jacket then ask my dear friends to wear these jackets in a room filled with traditional “suits.” I ask them to go where they do not belong.

I tend to embrace outsider art. I tend to appreciate the work of those without formal training who paint because they must. There is a spirit and a drive within their work that is not easily surpassed by technical mastery of the form. I tend to love to see art in unusual places and artists where they do not belong.

This past March, I recited poetry at Bus Boys and Poets during a celebration of healthcare reform. The room was filled with activists, musicians, and poets. There was quite a stir when an entourage of well-dressed figures entered the room and sat on the front row. I recited my poem “Wheals on the Bus". I spoke of riots and rights and data access. I spoke of Martin Luther and Martin Luther King Jr. I spoke of Rosa Parks in relation to healthcare reform. It was a powerful poem. As I stepped off the stage I stood in front of the reason for the entourage. Rep. John Conyers, Jr. (D-MI) stood up clapping and held my hand and thanked me for the poem. A congressman stood within a sea of artists, and we welcomed him.

This week I saw congressman Conyers again. He was asking the comedian Stephen Colbert to excuse himself from a Capitol hearing and submit his testimony into the record. This was too serious a proceeding for a comedian to take part in. He would only distract from the real purpose of the day or perhaps he was only there to promote his show or his march. He did not belong.

I suppose in 1981 there were people who thought Jack Klugman did not belong on Capitol Hill, either. Jack was the lead actor on a very popular show called Quincy, M.E. He was only an actor portraying a doctor, but he had come to speak about orphan drugs. The room was packed with reporters and cameras as Klugman spoke, and his appearance that day is part of the reason the Orphan Drug Act was passed. The other part was the patients. The room was filled with children and adults all suffering from the effects of their rare diseases.

I am so glad an actor and a large group of patients came together in common cause to help those who suffered so. I am sure that day seemed as much a three-ring circus as the recent Colbert appearance.

I will be painting at a conference soon. I will have my easel near the stage and paint and live tweet, and perhaps, I too will seem to be a circus act.

On Tuesday the 28th and Wednesday the 29th of September I will be in Philadelphia. I will be attending the E-Patients Connections 2010 Conference. I will be speaking at the conference about patients’ rights, special education, and participatory medicine. I will be one in many. There are many amazing people working toward positive medical outcomes attending this conference. Looking through the speakers list I see CEO’s, doctors, HIT designers, Pharma reps, and individuals involved in government. I also was pleased to see a poet and an actor. Perhaps things are becoming more inclusive. Perhaps there are fewer off-limit venues for patients and artists.

On Wednesday, I will speak in the morning. At the end of my speech, we will auction off the work I painted on site. It will be a three-panel piece explaining the current role of patients within HIT and the vision of what that relationship could become. I will use the metaphor of a child on the playground to visualize this complex subject. It should be amazing. We will live tweet the event, and people can bid online with the hashtag #ePatCon. All proceeds will go to Ivymount School. This is a non-public school that focuses on helping children with autism.

Whether an artist paints at a conference, or an actor speaks on Capitol Hill, it is important to being willing to step outside the comfort zone. This is a good thing for people and patients to understand. Do not let anyone tell you that you do not belong. When you present the testimony of your health history don’t excuse yourself from taking part in the ongoing discussion.