ACES

You may think Matthew Holt is just some eccentric chap who fell into the world of health information technology and thought he would try it on for size.  Some may look at his raised questioning eyebrow, listen to his rather caustic statements and think that Matthew is just dabbling in this space until something else catches his fancy.

They would be wrong. 

Matthew hides so much behind a clever jest or turn of phrase. I have watched those blue eyes fill with worry rather than mirth.  Matthew cares very much about the future of health, and not just the sparkly tech- ‘I have an app for that’ side of health.  He makes a point of inviting patients to his Health 2.0 events.

I asked Matthew to join The Walking Gallery many times, but he always redirected explaining he did not own a jacket.  I continued to pester him, until he finally admitted,  “Well, I do own that one jacket, but it is red satin.  Will that work?”  I said yes, rather emphatically and then asked for his story.  Then Mathew told me he wanted to tell someone else’s story. 

Matthew and his family are financially secure; they could take their baby to any pediatrician in the San Francisco bay area.  But they go to the Bayview Child Health Center. They go to the poverty clinic and their child is seen by doctor Nadine Burke.  She is changing the practice of medicine one child at a time.

This is Matthew Holt’s Jacket “ACES.”

Life is a gamble they say.  Some win and some lose, but those that have the deck stacked against them are much more likely to lose.  Imagine we are are all playing poker, aces are high and it is five card hand.  The player holding 4 of a kind in aces plus the kicker (that random extra card), is very likely to win the hand.  In this jacket vinette I worry for the winning four of a kind. 

In this painting, children are arrayed around Dr. Nadine Burke.  Four of the children show playing cards in their hands; each child holds an ace.  The children look worriedly at their parents and the doctor as the she advises one parent.  These children combined with the parents represent the ACES: Adverse Childhood Experience Study.  This study was a joint research project between Kaiser Permanente and the CDC conducted between 1995-1997.  The baseline participants are still being tracked today.

The results of this study were astounding.  

Participants were asked if they had experienced adverse childhood events in their households. To the far left a man looks up as he prepares to ingest an anti-depressant medication. "Was a member of the family mentally ill or depressed?"

Beside this figure a large muscular man in an orange uniform and wearing handcuffs stares out at the viewer. “Was a family member imprisoned?”

Beside this man and to his right a woman with a bandaged arm and bruised eye is speaking with Nadine. “Was your mother treated violently?”

In front of the abused mother, another woman has collapsed upon the floor with a bottle of beer in hand. “Was a family member an alcoholic or drug user?”

Finally a tombstone completes the scene, “Was a parent absent due to separation, divorce or death?”

Participants who answered yes to four or more of these questions were at substantially higher risk for premature death and chronic health problems.  The research determined that children did not have to be subjected to direct physical abuse to suffer adverse effects in their health.  Just being in this hostile environment had a cumulative and toxic effect on the child’s DNA.  Of those studied with a four ACE’s it was found they were 260% more likely to suffer chronic pulmonary obstructive disease compared to a child with 0 ACE’s. 

So Nadine is incorporating this study into her care design.  She is treating each child with the knowledge that they are predisposed to suffer certain health conditions.  I sincerely hope those technology firms designing electronic health records learn from her work.  The electronic health record cannot be an episodic receipt of care; instead it must provide a view of a life in its entirety.  What happened yesterday has great impact upon today.

As an adult reading this study, I know I must communicate more with my doctor, as I am one of those lucky ones.  I hold four of a kind in this game.  When my youngest son Isaac saw the picture he wanted to be included. I did not want to do that. But he’s the kicker, for no matter how hard I tried to have him live a childhood better than my own, his father has died.

So Isaac holds hugs the tombstone. I know in this way the deck is stacked against him.

Trisha's Calling

In the week before the gallery gathered in Washington, DC on June 4, 2012, we walked online.  A suggestion bubbled up on the twitter feed that walkers change his or her avatar to their jacket image.  It was a great idea, as many of those who live far away cannot make it to the physical gathering.   I was a beautiful thing to watch then twitter screen fill with icon art as the gallery neared.  So many pictures, in so little space scrolled before my eyes during that time.  One avatar stood out in particular.  That was Trisha Torrey’s image; she left the world of the functional icon behind and entered the world of the sacred.   She laughed at me when I said her picture looked holy.  After all, I had painted the image; I knew exactly what it looked like.  Except, I did not know. You see, Trisha cropped off the red boarder of her jacket when she posted the image.  That changed the tones of the blues within the piece, and their intensity was less without the reflected glory of the red. Those blues had become silver and her jacket had become an Icon.

This is Trisha Torrey’s Jacket: “Every Patient’s Advocate.” 

This was the second time I painted Trisha and I doubt it will be the last.  She first appeared in all of her cheery goodness in the painting “Give Us Our DamnedData.”  She is an unusual member of the justice league of patient advocates.  Like many in this space she joined us due to a medical error.  But her case is rather unusual.  She did not have cancer.  She was misdiagnosed with a very aggressive and deadly form of cancer and urged to begin a toxic treatment immediately.  Trisha sought a second opinion of another oncologist because she felt fine and trusted her body more than the orders she had being given.  She got a copy of her lab results and the questions began to pile up as she researched the terms and words included in the report. 

Prior to her appointment with the new doctor, she was pretty sure she did not have cancer. The new doctor confirmed it.  Now this is the place in the story many folks would walk away.  Perhaps this would become fodder for future conversations during book club or a great comment to post online in response to a cancer article.

Trisha took this experience and changed her life.  She created a bridge from her old life to a new one of advocacy.  She cannot forget that moment when she was told she had a fatal disease.  She cannot get back those weeks of worry she suffered.

Have you ever held your breath while crossing a bridge?  It is a game that many children play.  It is really fun game until the day you reach a long bridge. That day it stops being fun.  It stops being fun when your vision darkens a bit around the edges and that panicked gasp bursts forward from deep inside.  At this point a child might giggle, forgetting the terror of one moment before.  But Trisha does not forget the terror of that moment she could not breathe.

So Trisha writes and Trisha speaks.  Trisha questions many things and does so in a way that is not off-putting, yet is very much filled with authority.  In this painting she is the cloud and she is the embracing bridge.  Trisha connects people and she uses the tools of online advocacy to make this connections.  She does it through her writing at Every Patient’s Advocate and her patient and caregiver resource the AdvoConnection.   Within this image she is bringing people together, both providers and patients meeting in the middle.   

Above this vignette is Trisha’s face: sacred and serene doing what she must.  Living her mission to advocate for others, for that is Trisha’s calling. 

Upside Down and Backwards

Each year as the anniversary of my husband Fred’s death approaches, I am preparing to teach Vacation Bible School.  I taught the art at VBS for many years before Fred’s death and now for years after.  It always is an honor.  The hardest year I taught was when we had just buried Fred.  It was a few days after seeing Fred die, that I stood before a room of bright faces and taught them about the love of God. 

Sometimes the lessons are hard ones. 

Sometimes the lessons I teach do not mesh well with a young child’s concept of what is fair.  I know the parable of the last minute laborers in the vineyard was a hard one for a lot of my students.  Do you know that tale?  Jesus spoke of a landowner at harvest who hired some laborers at the beginning of a day and they toiled all morning.  The job was large, so at midday the landowner hired more, and then again at mid-afternoon.  Finally when the day’s work was almost over, he hired any laborers yet remaining to work within his field.  At the end of the day he paid all the same coin: the accepted amount for a day’s labor.  Some of the morning crew grumbled that it wasn’t fair, they had worked longer had should be paid more.  To this complaint the landowner responded he had paid the agreed upon wage to all.  Jesus concluded the parable with a powerful phrase,  “The last shall be first, and the first shall be last.”

That is a good phrase to keep in mind when we consider The Walking Gallery.  I do not paint the jackets in the order in which they arrive.  I paint them in the order that they should be painted.  I do not own the gallery; it owns me.  Sometimes I see with crystal vision the image that should be painted upon a jacket that just arrived that day, while other worthy jackets linger in the queue.  No, it is not fair. 

I guess by that standard an ER is not fair.  Patients are not processed in a straight chronological order, they are triaged.  Sometimes the last shall be first, and the first shall be last.

This is Michelle Litchman’s Jacket: “Upside Down and Backwards.” It arrived express mail and left via express mail and should arrive in time for Michelle to speak in at the American Academy of Nurse Practitioners Conference. 

In this painting we see a cheery gingham tablecloth.  Upon that cloth is a spoon.  Within the concave depths of the spoon, we see a reflected face.  This is Michelle’s mother who is an immigrant Vietnam.  She lost her hearing at the age of two.  Each time she goes to the doctor she needs a sign interpreter to fully understand.  Often she has been left without an interpreter as facilities say it is not feasible and is a financial burden to provide this needed accommodation.  Often staff will try to letter sign alone.  Can you imagine as a hearing individual the cognitive processing frustration of someone speaking letters to you one letter at a time during a medical encounter?  A system of care must first and foremost communicate well with patients, anything less than that is antithetical to good care design.  It is upside down and backwards.

But Michelle's frustration does not solely revolve around her mother’s care.  Michelle is a nurse practitioner who specializes in diabetes care.  She has heard far too many patients vent their frustrations at a system that left them with no preparation on how to live with diabetes.  Diabetes is far more than just “watch your sugar.”  Diabetes is a complex disease and all of the elements of care cannot be discussed in a fifteen-minute appointment. 

So within Michelle’s jacket glittering sugar is spilt upon the tabletop. It is literally glittering, as I added glitter to the white paint on this painting.  I bet some folks will stare mesmerized by the sparkle as Michelle stands before them.  They will stare and they will wonder.  What does this painting mean?  What is it trying to say? 

I wonder if they will get a chance to ask her, or like so many patients with diabetes or like Michelle’s mother, will they leave with their questions unanswered? Left filled with a nagging frustration and wishing that had been able to learn more.

Tiffany and Lupus

When I was 20 years old I spent the summer with my mother in the house I lived in as a child.  I had only been away for less than a year.  It had been a very hard year.  I felt very alone. I was not doing very well in college.  I was falling. I was failing.  I went home to my mother’s embrace.

But I am unable to sit still for long. 

Soon I was volunteering for the local community theatre.  I only had one year of college but that was deemed sufficient training to be in charge of costume design and stage construction for the production Oliver.  Every spare moment I was building costumes or building sets on the local high school stage.  I scheduled a work call to build the set and only person showed up to help.  Fortunately he was a contractor, so we got quite a bit done.  The next day I began hauling 50 lb drums of drywall mud to the set, when I felt my back go out.  Once I could breathe through the pain I went to the office and called my Mom.  She came in her car to get me. I could barely walk.  Going to the doctor was out of the question since we had no insurance, so she placed me on her bed to rest with an ice pack on my back.  She rolled me over as needed, because I could not do that myself.

I lay within the room upon the softest white sheets.  In the center of the sheet my mother had embroidered a peacock in a sacred tone of blue.  I would run my hands over the hundreds of French knots that marked the plumage. An occasional gentle breeze would blow in from the open window and the window sheers would billow like the wings of angel.  My mother cared for me.

Soon the show's director called wanting me to come in to work on the set.  Now, my Mother is the sweetest, kindest person you could ever meet.  I had never seen her raise her voice outside the family.  But that night she yelled on the phone at the director of the show, and I smiled.  I knew my mother had my back, even if I had broken it.

Perhaps this story is the reason I loved Tiffany Peterson since the moment I met her.  She is an amazing advocate in the Lupus community and she orchestrates great deeds from far away, often while laying in a bed in pain. 

Tiffany is an older child in a large family.  For many years her mother depended on her help with the younger children.   Then one day Tiffany was sick.  For quite a long time no one knew what was wrong with Tiffany.  She moved down from her upstairs room because climbing became too much for her.  She was placed near her mother who became her caregiver.

This is Tiffany’s jacket: Tiffany and Lupus. 

I painted this in New York at Social Media Week NYC in February 2012.  I painted this at the easel while Tiffany told me her tale and a crowd swirled around us.  The strangers laughed and spoke with a slightly maniacal tone that accompanies the second glass of wine.  Occasionally, someone would jostle my easel or make a witty remark about live painting at a cocktail party. 

But within the spiraling conversations, there was a pool of stillness where Tiffany and I stood.  For beautiful, quiet Tiffany was pouring out her heart and I was wetting my brush in her soul.

In this painting Tiffany lies within a darkened room.  In the far background her father is represented only as a silhouette.  He is leaving her.  He does not believe her pain, after all she doesn’t look sick.



In the foreground Tiffany rests on purple sheets, the color of Lupus.  Her mother holds her as she holds her mother.  The love between them is palpable.




In Tiffany’s hand she holds her laptop.  It is her window to the wider world.  It represents all of her online friends who support her in her disease and on her journey.

Tiffany is beautiful, brilliant and she has so much to look forward to.  She has such a powerful voice online and in person.  But she suffers still.  She gets tired.  She watches what she eats.  She wears a hat in the sun.  No matter what she does to stop it, the disease can still assail her.   Tiffany does all she does while in pain.  When all of the other advocates have gone to sleep; it is just Tiffany staring at the blinking cursor.  Just Tiffany and Lupus.

#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 Sacred Duty of a Mommy Blogger

This February when I attended Toy Fair in New York, I attended as a blogger for Child’s Play.  Toy Fair is an absolutely huge exhibition and sales conference.  For many years I attended as the art buyer from one of the best toy stores in the nation.   When I walked into a booth I was treated with a great deal of respect due to my buyer’s tag.  When the booth staff saw my store name and location, many an exhibitor would jump to their feet and grab an order pad.  They expected me to be fully knowledgeable about products and did not waste one second of my time.

I found I was treated very differently as a blogger.  Some booths were courteous, but many had me wait to one side as they found the press liaison or marketing director.  I often was walked through a both while the sales person rapidly recited ad copy scripts promoting the newest toys in the line.  Finally, after hearing a few too many trite phrases, I would interrupt with a pointed technical question. Thereby informing the sales person I knew quite a bit about their product line.

One woman even turned to me in surprise saying, “Wow, you know your stuff!  I was assuming you were just a mommy blogger.”

Just a mommy blogger. I find mommies are rarely just anything.  They are homemakers, caregivers, artists, teachers, lawyers, shop-keeps and doctors.  One of the greatest mommy bloggers I have ever known is Wendy Sue Swanson.

 

I met Wendy on Twitter as @SeattleMamaDoc.  She always tweeted astute comments about clinical care and social media.  Soon after Toy Fair I asked her to join The Walking Gallery.

This is her Jacket: “The Sacred Duty of a Mommy Blogger.”

In this painting a contemplative Wendy stares at the pencil in her hand.  She is preparing to write. She holds her duty as a sacred one.  The pencil itself is placed well within the foreground of the painting and seems as large as a totem pole, for that is exactly what it is. 

At the top of this totem pencil is Wendy’s doctor from her childhood.  He is two-faced within the carving.  One side of his face seem loving the other side is malevolent.   As a child Wendy suffered from a minor condition that required many injections and expensive long-term therapy.  She trusted and liked her doctor a great deal over the years of her treatment.  She finally did get better and suffered no side effects from the treatment. 

Fast forward a few years later to college, the FBI interviewed Wendy about her old doctor.  Apparently he had lost his license for fraud and he was laundering money. Soon, Wendy completed her degree to teach math and science to 6^th- 9^th graders.  She enjoyed teaching but realized her heart was aching for a different life path.  She decided to go to medical school.

She finished her medical school degree while dealing with personal health issues.  She received a master’s degree in bioethics.  She focused her research on the effect of media on the dyad of the patient-doctor relationship.  While in her residency she helped very sick children.  She saw first hand love and joy, hope and loss. By the end of her training she had a new reason to be joyful: she was pregnant with her son.

Wendy became a community pediatrician right after training.  All of her years of study had prepared her for much of her new career, but the best teacher was her small son.  She now practiced medicine as a Mommy Doctor.  The old way she looked at the world had fallen aside and now she saw life through a prism.  The light of knowledge would pass through her and form a rainbow of understanding.

But once you see as Wendy does, being a local doctor is not enough.  There are so many people who need help.  So Wendy tweets, Wendy writes, Wendy spends night and day working on ways to revolutionize healthcare.  She wants to see a world where patient and doctor communication improves.  She hopes to find a space or build one where doctors and patients are happy and fulfilled. 

I think she will do it.  After all, she is a Mommy Blogger.

Custom-Tailored Meaningful Use

Almost one year ago Paulo Machado called me on the phone.  I had been following him on twitter for a while, but he had recently seen Matthew Browning wearing a Walking Gallery jacket and he wanted to talk with me.  He called me up and we talked for a bout an hour about the Walking Gallery and my mission as a patient activist and finally he stopped our somewhat circular conversation with a statement.  

“Okay I have you figured out.  You are doing all of this because it is the right thing to do.  You are a do-gooder.”

I said, “Yes.”

He said, “Fine, I will tell you my story.”  About two weeks later we found ourselves at the same event in Philadelphia July 13-14, 2011 at the Regional ONC Meeting. I would paint four jackets in two days and Paulo’s would be the fourth.  He took it off his back and it was a very special jacket.

This is Paulo’s jacket “Custom-Tailored Meaningful Use.”

This jacket was one of the last jackets made for him by his father.   Paulo’s father Armindo became a tailor when he was only a preteen.  He was a master tailor as an adult.  He was amazing and could make any garment.  He immigrated to America in 1969, first working in the textile mills in Philadelphia.  When the mills closed he opened his own tailor’s shop in South Philly.

Paulo worked in the shop as a boy; he would cut and press.  As he grew older he would run the register and handle sales and generally help his father.  When Armindo was in his early forties he began to see his doctor because of some problems he was having.  For the next ten years he would be misdiagnosed with hemorrhoids.

Finally it was determined that he had colorectal cancer and he needed emergency surgery.  Neither he nor his second wife wanted to make waves or question treatment options.  Armindo had a deep respect for doctors that verged on awe as well as having a language barrier that affected his care regiment.  He continued to feel poorly and suffer pain in the following months.

He died at the age of 52.

If you look at Paulo’s jacket you will see his father.  Armindo is wearing the gown and slippers of a patient as his sits at his sewing machine.  Behind him is a pin up board of patterns for a suit entitled Custom-Tailored Meaningful Use.  The parts are labeled ONC, RHIO, ONC, CMS and Beacon.  But Armindo has no fabric beneath his needle as he has been given little tools to help craft legislation. 

His sewing machine has been placed squarely on a golden path that leads to a key.  Along the path are the tombstones of the dead.  These are the ones who have fallen as we wait for better communication and timely access to our records. 

Above the sky is filled with eyes.  These are the eyes in HIT.  They are watching this vignette unfold.  They can learn from this and change the outcome for others. 

Paulo believes care must be personalized clinically, and health policy must be personalized as well.  It must be custom-tailored to the need of the patient.  Technology can make this a reality.  A ready to wear one-size fits all approach will help no one and will chafe over the years.

For the past year Paulo has worn his jacket so many times.  He wears this jacket and people ask questions and listen to his answers.  He spreads the joy of his father’s life in the jacket his father so carefully crafted these many years ago. 

Everywhere Paulo goes he is held in a custom-fitted embrace and I am honored to be part of that.