The Enemy's Gate is Down

Beginning Friday May 18 thru Sunday May 20th, I had the honor of attending the 2nd Annual Health Foo Camp in Cambridge, Massachusetts.  This is an un-conference organized by O’Reilly Media and the Pioneer Portfolio of the RWJF (Robert Wood Johnson Foundation.)  It is a free private invitation-only event hosted on the NERD (New England Research and Development Center) campus at Microsoft.

I was overjoyed when I was invited, because I had seen amazing tweets about this last year.  I was doubly happy to find it was truly a camp.  Attendees could bring sleeping bags and sleep on the floor.  Limited scholarships were available to pay for travel.  This is a really big deal in patient advocacy circles.  Often we are invited to events that we cannot afford to attend without travel and lodging.


Day 1

I took the train and arrived with my various bags and my easel.  I looked so odd walking into the NERD building that a staff person glanced at me nervously upon my entrance.  I went upstairs to the camping room and I began to assemble my easel to the soothing strains of David Hale on his Ukulele.

I was painting a canvas for Roni Zieger (that I had been working on since TEDMED in April) when Paul Tarini from RWJF came into the room.  I mentioned my great joy that his organization received one of my favorite paintings from the TEDMED event: The Unmentionables.  He asked my impression of TEDMED, as it was my first time.  I responded, “Well, I might have a unique view as I painted each session, so was analyzing the event in real time.  Also, I wrote about the entire conference in 12 blogs in the three days after the event.

What jumped out at me was that was that women were underrepresented, in both quantity of speakers and type of presentation.  Woman often presented art, music, human interest and other “soft subjects.”  I was dismayed after the event to find other writers using 2-4 sentences to describe male speakers, and only using one sentence to describe women.  I asked one author about it, he said it had nothing to do with gender and everything to do with content.”

I also noted that patients were under-represented as well.  But I am hopeful this will change next year. 

I did praise the flexibly of TEDMED to grow and change.  They were willing to take a chance on this little disruptive artist.  They gave me a great location in the social hub to paint.  They did not try to muzzle or censor me in any way. They supported me by allowing an onsite assistant.  Kait B. Roe help tweet, while I painted.  TEDMED planning staff so enjoyed the art process that midway through the conference Shirley Bergin suggested I paint one more canvas so we could give one to each of the 12 major sponsors onstage during the last day.  I have great hopes for TEDMED 2013.

Soon more people filled the room and Roni saw me complete his painting before his very eyes.  






Then Ted Eytan, my best buddy in destructive creation, arrived. The conversations grew in volume as I pulled out my next canvas.  This would be the painting “Community.”

I began to paint this in the evening of the 18th as we all introduced ourselves using the twitter method of an un-conference.  You are supposed to state your name, title and where you work/what is your mission?  Then you say the three words that define you or spark interest.  I painted while listening. The introductions snaked around the room through the rows and rows of chairs.  Most people had a real problem with the three-word rule.  


Finally, it was my turn. I was standing beside a seated row. Before I had a chance to speak, the first person on the next row jumped up and took my turn.  I jumped in next, saying: “Regina Holliday, Patient Artist Advocate of the Walking Gallery.” Then holding out my canvas to face the crowd I finished with: “One. Thousand. Words.”  After introductions, the lovely young lady wearing a great pair of glasses said she was sorry she skipped me but had thought I was not a camper, instead thought I was staff since I was painting. 

I run into this problem quite a bit at conferences.  I am short and off to the side often times.  I am painting the event as I listen.  Often I am perceived as the paid help, rather than an attendee.   This can be advantageous though; I am often amazed at what is said openly before the help. 

Soon it was time to rush the unconference board with suggested break-out section topics.  So I looked up at the board and saw the portrait orientation of the slot I wanted on Saturday and quickly created a session entitled: “So you want to start a Revolution? Art, Data and Bubbles.  Once I placed it my session sign I mentioned to Ted that most of the other suggested topics had been placed in a horizontal orientation even if though did not fit the time slot.  He told me, “Look at the text on the paper.  It is written in a horizontal fashion.”  So in the minds of the majority orientation was determined by text.  Whereas, I chose based on establishing what space that was available.

Which reminded me of Orson Scott Card’s Ender’s Game and its philosophy that “The enemy’s gate is down.”   Based on the tech-fueled conversation that filled the next two days, I am betting most of the folks at this event have read Ender’s Game.  But if you have not, in brief, it is a Hugo award-winning science fiction novel written in the early eighties.  The US Marine Core has embraced it as required reading, as did gifted and talented school programs throughout the US.   In this book a small young boy, who is incredibly bright, goes to battle school where he fights a virtual enemy consisting of insect aliens using gamification techniques.  He also fights other children in zero gravity environments.  He is assigned the task of creating a winning army out of rag-tag rejects and does so.  He grasps a concept that eluded others.  Upon entering the battle room most children oriented up and down based on the gravity of the outside corridor.  He reminded his team no matter the orientation of the outside world when they hit the battle room: “The enemy’s gate is down.”

I would spend the rest of this conference studying orientation.

I slept that night on the floor, which was rather hard on these 40-year-old bones.  




Day 2


Then Ted met me at NERD and we had a rousing walking meeting first thing in the morning. After breakfast I attended my first session with my easel.  We talked about sensors, as they relate to the quantified self.  It was a rather confusing session for me at times as they often said QS and in my world that means quality and safety not quantified self.  Which made for some rather odd mental constructs in my mind. 

All the while I began to paint the camp logo as a seesaw, and embellished it with a circuit and money. I was hearing about the glory of tech and the pursuit of the mighty dollar but not a lot about reducing harm.

Next I went to “Icon Salon: New symbols for health” a session focused on creating simple images hosted by @chachasikes.  So we spent the next hour drawing and talking about cultural symbols. 

Then I left to I host my session.  After I waited in a room by myself for about 5 minutes, I began to draw a female figure on the white board to wait with me.  After 10 minutes, Roni walked in and we began to speak about revolutionary art ideas.  Then at 20 after David Hale walked in.  We spoke about a poster campaign to help patients.  Then we discussed strategy around creating Hospice Cards, because there is nothing between “Get well” and “Sympathy.”  Then we got on the topic of no wifi at many venues, whether it be hospice or TEDMED.  We came up with a plan to address that problem and bought the domain name #WTFNoWiFi during our session.  Then we began discussing a speech recognition error in the electronic medical record known as "Labia Menorah" not caught in an editing process.  I decided this must be the name of the female figure on the white board.  We talked about creating a website and art series on drug effects adverse or positive. Then Lygeia Ricciardi entered the room and we ran these ideas past her.  Finally we closed with my performance of the spoken word piece I wrote at TEDMED entitled “Spit.”

Then we cried a bit.

Next I went back to my easel and painted while Nicholas Christakis spoke about the social evolution of networks.  I painted constellations in the painting with Twitter birds flying from camp attendees to reach their network of friends.

Next Gilles Frydman and Roni entered the room to host a session called the “Networked Patients and the transformation of science.”  I finished the community painting during this as we discussed the wonder that is ACOR with Dave DeBronkart and I explaining our patient experience in the group.  Many in the audience were amazed that a patient community could have conversations with scientific rigor. Sigh.

Next one of my favorite sessions was about data.  This session was a wild collaborative conversation that represented what an un-conference is all about.  We talked about big data, aggregating data, the role of non-profits, the role of private enterprise, the MIB and autopsy rates.  This session rocked.

That evening the ignite speeches began.  Ignite speeches are 5 minute speeches with a slide deck of 20 slides that advance every 15 seconds.  Ted and I had wanted to do one together, but ran out of time the week before.  But when the speeches began we could not help ourselves.  Ted pulled out his Mac and we hacked our decks that were posted on slideshare into an ignite deck.  I then was last presenter and the energy was amazing in the space.  Yay! Patient/Doctor partnerships!!!

This night we all walked over to a local pub and had drinks.  We had amazing conversations walking there and I got to talk to campers that I had not really spoken with before. 


Day 3

The next day Ted Eytan and I enjoyed our morning walk with Claudia Williams before camp began.   Then we went back to the un-conference where I hosted a session called “What does Faith have to do with it?: The Role of Religion in Medicine.”  Now I think this topic was a bit too disruptive for folks who self-define as disruptive.  Many of the people I invited were not interested in talking about God on a Sunday morning.  Well, if I have to miss Church to attend Foo Camp, I can bring thoughts on God to Foo. 

Also we free-painted the entire session.  It was amazing.  There were six women artists in this session including myself, Susannah Fox of Pew Research, Lygeia Ricciardi from ONC, Marya Zilberberg, MD EviMed Research Group, Chacha Sikes of Food Cards, and Kyna Leski Professor and Head of the Architecture Dept. at Rhode Island School of Design.   





We talked of faith, Stephen J. Gould, lucid dreaming, hands and participatory art.  Once again I studied orientation within this piece of art collaboration.  There is no up; there is no down.  This piece simply is.


Soon Ted would host a session focused on writing nomination letters for me.  The GAO Government Accountability Office was accepting nominations for an advocate to assume an unpaid position as a patient or consumer representative in HIT policy discussions.  Ted crafted his letter on the spot.





Soon after it was lunch.  We talked in a small group about philosophy and power with Susannah Fox, Claudia Williams and Jamie Heywood.  And here too, we cried a bit.

Then it was time to say goodbye.  Paul Tarini and Tim O’Reilly sat in the spacious wooden staircase/auditorium seating area.  The campers gathered around on the floor space in front.  Here the attendees were the speakers and the hosts were the audience.  So that was the last flip of orientation and expectation.

The conference was over and we ceased to be only foo.  We were released from the role of the variable or a placeholder.  We left that space and began to solve the equation of health.

Lessons learned: Never forget the world of HIT is a new space, the status quo of the corridor is behind us and the enemy’s gate is down.


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btw, I welcome crowd-sourced editorial comments.  I often write these posts between doing dishes, folding clothes and monitoring the escalating foam sword battle between my two sons.  Sooo, occasionally I will misspell or completely misapply a name and I really appreciate it when you point that out.  THX!  

Pecking Order

I went to Vacation Bible School every summer of my youth.  We called it VBS and I think it was the first acronym I ever used.  I attended many VBS programs, each lasting a week, but my favorite one was at Immanuel Lutheran Church in Breckenridge, Oklahoma.  Breckenridge is a very small town surrounded by miles and miles of red dirt farms.  Most of the roads are gravel and the population has stayed right around 250 since 1970.

I loved this little Church and I loved the kind Pastor with his gentle voice.  His name was Pastor Kjergaard.  He wore his clothes nicely pressed and often wore a sweater that reminded me of Mr. Rogers from PBS.  Every year he would address all the children in the Church who had left backyards and toys to sit upon a pew on a summer day.

Each year he would open a large picture folio and tell us the story of the hen.  I would settle into my pew as Pastor recited a story he had told since the 1950’s using a book from the same time. I loved the vivid Technicolor perfection of each large illustration.  He told us about the Farmer who took care of the farm and the kind mother hen who lived there.  He showed us panels of her proudly walking with her chicks around her whilst pecking at the food.

Then he showed a picture of the hen house catching fire.  Then my eyes would well with tears as I thought of the pain the hen must endure.  All the children would sit in rapt attention as they waited for Pastor to tell us the fate of the little loyal hen.

The next day the farmer found her.  Her feathers burnt, she lay slouched over on the ground.  He gingerly pushed at her and was amazed to find all of her chicks still alive beneath her scorched body.   She lay her life down to save them. 

The children in my pew would sniffle and press their hands quickly against tearing eyes.  Then Pastor would thank us each for coming and remind us every day to please bring one more friend tomorrow.  He would ask, “Could you each just bring one more?  Bring just one more to celebrate with us.” Each day they did.  A child who only attended one day was as welcome as a child who attended all five.  Pastor never worried about whether we would have enough food or lesson sheets to share.  It was more important to make sure everyone was included.  Money could be stretched if needed, it was most important to welcome everyone to the table.

In town of only 260 people we would routinely have 60-70 children in by the end of the week.

I thought of this story when I first began to hear about HENs in relationship to Partnership for Patients.  HEN’s are Hospital Engagement Networks and they work with facilities to help them reach the twin Goals of the Partnership for Patients: a CMS funded initiative.

I am very familiar with the goals of Partnership for Patients as I attended the Kick off meeting almost a year ago.  I was invited to attend at the last minute and in a room filled with members of private enterprise, providers and CMS folks. I was the only self-defined patient in the room.  I even painted that day. The painting was a re-visioning of their logo and title.  It was called “Partnership with Patients.”

That meeting was a beautiful moment in time; many who attended it called it an “altar call.”  Organizations and businesses raised their hands proudly, volunteering to do all they could to reduce hospital acquired conditions and hospital readmissions.   In the months after, HEN’s became active and strategies began align. 

I raised my hand to that day and was told patients would be contacted at a later date.  The months rolled by and I learned that Partnership for Patients was still having meetings but I knew of no patient involved in these discussions.  Finally, on April 26 2012, I received emails from those organizing the PFE (Patient and Family Engagement Network.) I had 24 hours to complete a rather complex form to be considered for the committee that would meet on May 22^nd and 23^rd in Washington, DC.  I then received emails from other prominent advocates who had this short notice as well.  Then we forwarded this information to advocates across the nation.  Many stayed up late into the night to turn in their applications.   

We waited.

Then on May 9^th this email came to me and to other advocates who look like this:

Thank you so much for your recent application to take part in the inaugural meeting of the Patient and Family Engagement (PFE) Network of the Partnership for Patients (PfP). 

Unfortunately, as a result of continuing efforts to reducing spending on travel for federal government meetings, the in-person meeting of the PfP Hospital Engagement Networks (HENs) and the PFE Network has been cancelled. However, creating a collaborative forum for patient and family advocates to provide input and serve as catalysts for action through the PFE Network is still a very high priority for PfP. 

We hope that you will be able to join us on May 22^nd from 2:00 – 4:00 PM Eastern for an interactive webinar with a small group of patient advocate leaders in place of a PFE Network in-person meeting.  We are refining our agenda right now in light of the change from a larger meeting, but this would be a very important opportunity for us to hear directly from a small group of leaders such as yourself about best practices in patient and family engagement, share plans for collaborative efforts with HEN hospital leaders and discuss ways a PFE Network could support raising awareness and action on patient safety issues.   

And then on May 9^th this email came to advocate who looks like this:

Thank you so much for your recent application to take part in the inaugural meeting of the Patient and Family Engagement (PFE) Network of the Partnership for Patients (PfP). 

Unfortunately, as a result of continuing efforts to reducing spending on travel for federal government meetings, the in-person meeting of the PfP Hospital Engagement Networks (HENs) and the PFE Network has been cancelled.  However, creating a collaborative forum for patient and family advocates to provide input and serve as catalysts for action through the PFE Network is still a very high priority for PfP and in the future there will be other opportunities for you to take part in Network activities, webinars and trainings.  Your insights, personal passion and voice as a patient or caregiver leader are very important to the Partnership for Patients. 

Best regards,

There was no invitation to attend via webinar.

Kathleen Siedecki, US director of Global and Public Health from Weber Shandwick a public relations company, managed the webinar in conjunction with Elizabeth Stinson from Public Affairs/Communications from Powell Tate, a division of Weber Shandwick.

And when I say managed, I mean managed.  We were paired with advocates we were supposed to talk to before the event to build collaboration. I suggested we communicate openly prior to the call using email or social media, like Facebook or Twitter. This was discouraged. I asked to live tweet the call using a hashtag so as to include voices left out of the conversation. I was told no.


I tweeted anyway using the hashtag for patient safety. 

I was told that this webinar would be about collaboration. For the first ten minutes of the call, I and another advocate were left on hold.  When we finally got in, the call was filled with power point lectures about HENS and the Partnership for Patients origin and goals. 

The webinar was scheduled from 2:00 to 4:00 pm.  At around 2:40 to 2:50 pm Patients were allowed a few minutes to speak.  But were reminded throughout that we only had a few minutes.  Then the call went back to power points. The common theme within these power point lectures was that patients were complaining they had no voice, oh the monstrous irony!  They briefly showed a two-minute video of my data advocacy work. Then the lecture continued. 

At around 3:30pm when it was pretty clear there was to be no open collaboration in this call, I blew a gasket and told them what I thought.

“Had anyone even apologized for this meeting involving patients occurring almost 1 year after the kick off session? You might have done that in the first ten minute while you kept me on hold.  In a call that is supposed to be a collaboration of patients, you have let us speak all of 15 minutes and I am including my video interview into that amount of time.  There are people on this call feeling marginalized and managed, and I know that because I am getting email messages from them right now.  You want to know how to engage with us?  Grab the domain name Partnership With Patients right now, I just checked it is available.”

With that the dam broke and everyone talked in turn about their very valid concerns.  The agenda was overturned and the call ended with open communication.

I gave them 30 minutes but they did not grab the domain name.  So I did.  Then I started a page on Facebook inviting my wonderful friends who are patient advocates and my wonderful friends who are doctors, techs and nurses, because at the Partnership With Patients everyone is welcome.

We ask you to bring your friends.  It does not matter if you have been working in this field for years or if you just began to today. We welcome you. We will not exclude because of worries that we may not have enough supplies to share or funding for travel.

 Those managing this call forgot something.  They forgot the worse thing they could do is remind us we only have ten minutes of their valuable time.  I have heard this before.  I heard it at the worst moment in my life just like many advocates on this call.

So there are HENS.  What is that old saying?  Birds of a feather flock together.  Do you know what that means?  It means some birds’ feathers are in disarray because they have been hen-pecked.  It creates a caste system within the group.  And some of us unite behind charred and blackened feathers. We unite behind pain and those who have died for this cause.  Someone forgot tell these folks there is a new bird in town, it's blue and it tends to tweet a lot.  So we can no longer be divided by castes in safe little silos, now our thoughts fly.

We will work on our Partnership With Patients Campaign, I invite you to join us.  We will create a PEN, a Patient Engagement Network, for we are all patients in the end.  We all deserve dignity and respect.

And a PEN is really good at writing about injustice and then telling the whole world.


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Update:  I am inviting the PR team behind this call to attend HealthcampDC during Health Innovation Week to get an immersion in the wonderful collaborative method of an un-conference.


Also, I am trying to see if we can assemble during Health Innovation week as so many patient advocates will be in town June 3-June 8.  I will keep you posted. 

Error 404 in the Patient Advocacy Community

Three years ago, I began to live my life as a patient rights advocate.  I painted a visualization of my husband Fred’s medical record as he lay in hospice.  It was called the Medical Facts Mural.  The painting consists of an anatomy drawing of Fred’s physical status combined with data from his medical record.  It is painted on the wall of a deli and thousands of people have seen it in this span of years.

 


Just paint upon wall, every day it advocates for patients.

Three years ago, I wrote through tears after the burial of my husband.  I wrote about him and all the patients like him. I said simply, "I didn’t ask for this cup; I will drink from it, though.  I will let the anguish of us all pour through me.  I will be his voice.  I will be your voice.  We are all patients in the end.  We should have the right to be treated with dignity and respect... I will stand up.  I will not be silent.  I will not give up the fight."

These words still define my mission three years later. I have never given up.  In the years hence, I have traveled throughout the country representing the patient voice within HIT (Health Information Technology).  I speak about it, paint about it and write about it.     

I will not be silent.

Every post I have ever written still testifies for patients throughout this great nation.  I have never removed a post.

Sadly, this is not the case for all patient advocates.  Some advocates who work for organizations have not been able to testify as freely.  Some have been told not to speak, some have been told not to tweet and some have been told to remove posts that represent the outrage that patients express when they have been denied access to their data.

My heart breaks for advocates like these, who in order to retain employment must bow their heads and shut their mouths within the halls of medicine.  These advocates are torn between telling the truth and protecting the reputation of their organization.  When you listen for their voice, it is silent. When you search for their blog post, you will see error 404: Page not found.

 


Recently there was an announcement for an opportunity for an advocate to assume an unpaid position as a patient or consumer representative in HIT policy discussions. 


GOVERNMENT ACCOUNTABILITY OFFICE (GAO) has a Health Information Technology Policy Committee Vacancy.

 See below:

ACTION: Notice on letters of nomination to fill vacancy.

-----------------------------------------------------------------------

SUMMARY: The American Recovery and Reinvestment Act of 2009 (ARRA)
established the Health Information Technology Policy Committee (Health
IT Policy Committee) and gave the Comptroller General responsibility
for appointing 13 of its 20 members. ARRA requires that 3 members be
advocates for patients or consumers. Due to a vacancy on the Committee,
GAO is accepting nominations of individuals to fill one of these three
positions. For this appointment I am announcing the following: Letters
of nomination and resumes should be submitted between May 5 and 25,
2012 to ensure adequate opportunity for review and consideration of
nominees.

FOR FURTHER INFORMATION CONTACT: GAO: Office of Public Affairs, (202)
512-4800. 42 U.S.C. 300jj-12.

I am asking all those who read this blog to nominate me for this position.  I exist within this space as a database of stories.  I tell the story of my husband and my sons.  I speak from my patient center and with the additional resource of the hundreds of stories that populate The Walking Gallery of Healthcare.

I represent no view other than the patient view itself, as told through story and data combined.  As we create a new model of payment within medicine based on outcomes rather than fee for service, story as perceived by patients will have a vital role in quality measurement.  Total Performance Score within Value Based Purchasing utilizes an alignment of both Clinical Process Domain and Patient Experience Domain.

Patient Experience Domain is the narrative of an episode of care from the patient view.  Health Information Technology provides an opportunity to create a “book” of care authored by many.  The patient view must be represented as we design this new model of participatory care.

I am not a non-profit nor do I represent a foundation.  I am just a regular person, and like many patients in this nation do not have a degree, let alone a terminal one.  I lived most of my life uninsured and lived in poverty and know well the strain of these conditions as we talk about health policy. 

I represent those who have no voice at this great table. Those who meet here  will transform the patient’s experience for generations to come.

My primary income is as a speaker and I speak for the living and the dead.  I am paid enough in this role to support two children and myself in a modest life.  I founded an advocacy movement called the Walking Gallery.  There is no fee to join and all the members walk around the world sharing their patient stories.

In the past, patient advocates were chosen from large advocacy organizations who provided a spokesperson that represented hundreds of members.  In a new world filled with the tools of social media we can create similar structures without the need for a formal organization.  I collaborate with a loose confederation of individuals from all levels of society working toward the common cause of truly patient, and family, centered care.

Please write a letter of nomination for me before May 25^th.  I will promise you I will always speak from a patient view within the HIT policy discussions. 

I will stand up.  I will not be silent.  I will not give up the fight.


ADDRESSES:
GAO: HITCommittee@gao.gov.
GAO: 441 G Street NW., Washington, DC 20548.


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Since posting this a few people have requested letter examples.  Here are a few within blog posts.  


Keith Boone "Who Should Represent Patients?"  


Andy Oram "Health Information Technology: Putting the patient back into healthcare"
 
Ted Eytan's "Taking Care of Business at #HealthFoo , Nomination Letter, Regina Holliday, HealthIT policy committee"

The Word of the day is "Chaordic"

I grew up watching Sesame Street and fell in love with the idea of living in a city, and ended up moving to one. I watched felted monsters and people peacefully coexist, and now I paint diversity. I watched adults refuse to see "Snuffleupagus," so I now I mention the elephant in the room every chance I get.

And I learned about the word the day. For a child who truly struggles with reading, the word of the day is very special. It is repeated many times phonetically, visually and with humor. You cannot help but remember it.

Thursday May 17, I attended the Learning Health Systems Summit at the National Press Club in Washington, DC. I was invited by Josh Rubin from the Joseph F. Kanter Family Foundation upon a recommendation from Colletta Dorado CEO of AZZLY.  There I heard the word of the day. It starts with the letter "C," the word is Chaordic: a method of governance that blends chaos and order. This word became the painting of the day.



In this painting Joe Kanter stands upon a hill. He rests his hand on a tree of knowledge as he points to a city in the distance. Here is the city on a high hill for all to see. This is a symbol of the Learning Health System. This a big data idea that thought leaders like Joe have been working on for a long time.

What if your data did not have to die in dusty paper files and unconnected electronic silos? What if many private institutions, non-profit organizations, research centers, government entities and individual patients decided to share data? What if we could do this over a span of years creating an ever larger data set? That data set could be accessed by the many in a timely fashion that will enable both the individual and the organization to make informed health decisions.



That is the city on the hill back-lit by the cloud. For in the cloud this vision can become a reality. To the far left of this painting is body of water that contains islands of excellence. Here golden statues raise their arms in triumph. They have reached summit of care on their island. But this is not enough to help all that suffer in our country, we must spread data via the cloud to each other. Information silos kill, whether or not they are gilded in gold.



Below the city, the sky, the islands and Joe is a steep hill. The incline is sharp and the climb will be hard while many of those who ascend carry heavy burdens. Right below Joe and close to the summit is a doctor. He carries twin buckets filled with HIT(Health Information Technology). He strains to carry his load and he looks to left at the islands of excellence as though to ask, "Why aren't you climbing the hill with us?" To the doctor's left a blue collar American worker holds the US flag as he nears the summit. He represents the everyman, the tech crew and staff of the Press Club itself. They greeted me warmly as I painted and asked many questions and were amazed. They are part of the picture.

Below the Doctor is a heavy set woman with a basket on her head labeled "community." She is the caregiver, the strong back. She is the basket in which we are placing all of our eggs and she is tired but enduring. She marches toward the summit.



To her right is a mother. She hefts her child upon her back as she strides up the hill. She has the weight of the next generation upon her and the concerns of her parents on her mind. She too needs access to data that can effect the health choices of her entire family.



To her right a young man hefts a sign that says: "Research." He represents all those who would make our world a better place if he could only read and access data. If data sets were open imagine what he would do?



At the bottom of the painting to the far left, a nurse holds a banner. She represents the nurses' voice and she is almost pushed off the canvas. I attend far too many conferences, round tables and summits where virtually none of the speakers are nurses.



To her right is a business man or CEO. He looks up the hill toward the summit. He carries a banner that says "Private Public Partnership." He wants to be part of this and his insight and business acumen will be valuable.



To his right a woman holds high her flag that says: "Hospitals." Hospitals will be such a valuable part of the Learning Health System, as they are a repository of so much data.



Beside her a small child stands. She is a little girl in pajamas and holds an Elmo doll. This is a visual reference to one of the last slides by Harry Cayton from the Information Governance in the UK. He showed a slide from Sesame Street with Elmo, a patient and a doctor. To paraphrase he said "Look at that patient, it hard to feel confident when they take your clothes away. The doctor is fully dressed and in charge. Look at the caregiver: just something that is warm and fuzzy."

 To make this system work all of these players must be held in equal esteem.



Finally, we come to the patient to the far right of the paining. His Johnny is open, his hair is gone. Upon his shoulders he bears a yoke that carries two buckets. One bucket is labeled "private enterprise" and one bucket is the "government." A couple of people who viewed this were taken aback. They did not want to see a patient under such a heavy burden. I told them, "Look he has a yoke. Have you ever used a yoke? Marvelous invention! It lightens the load through balance and utilizes your core sttrength. Don't feel sorry for this patient. Feel sorry for that doctor hauling all that HIT uphill in two buckets at the end of his straining arms. That is painful."



After all, the patient is the great unknown variable as we climb the hill. He has not yet been activated and could do so much good. After all, as Dave DeBronkart would say who has more "skin in the game" than the patient himself? I guess is kinda frightening trying something new. It is sort of chaordic. But that is the energy that we need to crest this hill.

When I begin a conference painting I do not know what I will paint. Oh, I know the HIT space and the world of patient safety, but I do not know what the speakers will say that will inform this piece. I will have to create the piece in real time while following the rules of good composition. It is chaordic and it is beautiful.

See, things change over time. When I was a child I could barely read, the word of the day was a summit I tried to reach. But now, I am an accomplished reader. Today if you watch Sesame Street the adults do see Snuffleupagus. After 17 seasons the writers decided the gag must go. It was more important for children to know that the adults would believe them if they were speaking the truth, even if that truth was a hard thing say. Even if that truth was about the abuse the child was suffering. I know a lot of patients who need to attend events like this one. They have value to add and another world view, and just like Big Bird they always point out the elephant in a room.

The Orchestra

This is my painting describing the August 9, 2012 Association for Healthcare Documentation Integrity (AHDI) Annual Conference, Indianapolis, Indiana.

This is a workflow.  It is beautiful.  Every instrument is important within the performance.

This painting begins in the middle with the patient, for this is patient centered care.  The patient is relaxed her back is bare.  Cascades of paper medical records caress her legs as they fly up above her and into her electronic medical record. She is viewing this information using a patient portal. 

Below our patient to the left, a provider holds out a smart phone displaying a dictation ap.  He is showing the power of digitized data. 

Above this man is a woman playing a binary harp.  She is creating the code that supports our composition.

Above our patient the conductor is a doctor.  He is prescribing the path of care.  He holds his baton and leads the other players in a crescendo of data.

To the left two medical transcription scribes stand in rapt attention as they play their very important part in this orchestra.

These figures performing together create flow and are triumphant.   Everyone is important and the patient’s future depends on all of them playing their best.

For Angie

Last summer I visited Sapulpa, Oklahoma and walked the paths of childhood.

The house I once called home has been gone for many years.  But I walked to the block where I once played.  I stood upon a sidewalk that led nowhere.  The hot Oklahoma wind rippled my shirt across my sweaty back and the song of cicadas filled my ears.  I stood where my house once stood.  A greenish yellow lawn greeted me and our pecan tree yet remained. The pecan tree has reached such a majestic height in my many years of absence.

 


I walk through the yard that once was my own and gaze at the white house upon the hill.  This is the twin's house, the Berg house.  The two matching Pine Trees in the front yard now tower above me like the Pecan tree of my home.  I remember when these pines were small and four little girls played in this yard.
   
Should I knock at the door of the Berg house?  Should I tell the current owner of the summer days spent within?  No, I just close my eyes and the warm sun bathes my face as I walk back through the corridors of my mind.

 


I know this house. 

I know the cool blue gray paint of the front porch.  I know the side door opens to a dining room with vintage pocket doors.  I know that once a cat named Tiger lived here.  I know the way the light streams in through the living room sheers.  I know that the staircase is regal, but that did not stop us from riding mattresses down its bumpy length. 

I know my best friends once lived within this house.

I met the girl on the way home from school one day when I was only six years old.  She stood beneath a stop sign and smiled. She was one of two, but I did not know that then.  We talked shyly as strange children are want to do.  She said she lived in the big white house on the hill with her twin sister and the rest of her family.

That is how I met the twins. Angie and Katie Berg became fast friends with my sister Esther and I.  We lived only a block away from each other and spent many years walking to Washington Elementary School together. We were all in the same grade and they were as much a pair and my sister and I.

The twins lived a hard life.  They were the last children of a dying marriage.  They lived in the big house with five siblings and their mother.  We rarely saw their mother as she mostly stayed in her room.  She was stuck fast inside by grief of life lived not as intended.  We worried about the twins.  My sister Esther and I were poor, but there was always food in our fridge; not so Katie and Angie.  Many times I opened their fridge to find pickle juice, condiments and nothing else.  Or I would watch them live for days on only fried bologna.   My mother would press food into their hands every time she saw them, saying softly, “Those poor girls.”

Yet, even with all their struggles, the twins did well in school.  They played sports and had lots of friends.  They even had a paper route that occasionally Esther and I would help them with.  As the years past they grew stronger and their Mother grew less sad.  There was more food and we would dance and play.  Angie was so strong that by the end of elementary she could mow the sloped lawn of their yard.  She took great pride in keeping the house nice and was often working on it.   

Then in 6^th grade we drifted apart.  They had a party and invited all the popular kids, and did not invite us.  I asked Katie about it later as it hurt my feelings.  I was rather nerdy, chubby and looked the poor girl I was.  Katie told me it was not the kind of party I should go to, as I still played with dolls and things of childhood.  Angie and Katie both began to waitress at the best restaurant in town soon after.  With their meager earnings and their lovely home, it was enough to make the leap into the popular crowd.

Esther and I would watch the twins from afar.  We still see them and they were always nice, but we were no longer best friends.  Katie was a cheerleader and Angie was a homecoming queen.  I will never forget the day she was arrayed in all her finery.  I was on the debate team and the debate room is used as the green room for any high school stage event.  I vividly remember Angie curling her ringlets in my classroom.  I knew how soft her hair felt from braiding it many years before.  I walked up to her and touched it saying, “You look beautiful.”

And she smiled at me as she had always done and walked onstage into the light.

No, we were no longer close. The Twins no longer played with Esther and I. But when the abuse from our father became too bad during our junior year, we ran away from home and into the arms of our friends.  That night they welcomed us with open arms just as though we were little girls again.  It was with their phone we called the hotline number that led us out of a horrible home life.

Then we graduated from high school and flew away from each other.  Over the years I would hear things, good things and horrible things.  I would hear that Angie didn’t make it through WestPoint, and instead would go to OSU.  I would hear Katie was singing and was very good at it.  I would hear Angie got married, and had beautiful daughters.  I would hear that Katie was shot by a stalker and would never sing again.

Then a year ago I heard the whispers.  Angie might have cancer.  But they were only whispers, yet I knew cancer in my life and worried for Angie and her family.  Then a few months ago I started asking friends on Facebook if anyone could find Angie.  In March, Susan (Hartin) Ashbaugh contacted me with Katie’s number.  Then I was talking to Katie on the phone.  Angie was running out of time.  Could I visit?  I flew out a week later and into the arms of my friends.

If there is one thing that death has taught me it is, in the end, we become the children we always were. 

I stayed two days with Katie and Angie.  We went shopping and had ice-cream.  I met Angie’s three lovely daughters and I painted with them.  I met Katie’s beautiful daughter and I painted with her.

I learned that Angie had glioblastoma multiforme.  She found out the day before Easter 2011 after having a seizure.  She has had surgery, steroids and chemo, but it is growing inside her brain and she won’t be getting better.

When I saw Katie and Angie in March.  Angie could walk and talk, she could cook and hold her daughters.  She could kiss her husband.  She would forget things, but she did not seem too bothered by it and she would just smile.  She wears her hair short under a chemo cap, but it is still the lovely soft hair of our childhood.  I know, I touched it and said you look beautiful.

Now it is May, and Angie is in home hospice.  She can no longer talk, but she can still hear.  On Sunday, I called and Katie answered.  I wished Angie a Happy Mother’s Day. 

I like to think inside she smiled at me as she has always done.  And I know it will soon be time for her to walk onstage into the light. 

Painting Your Words

On April 24-26, I was honored to attend the Fifth Annual South Carolina Patient Safety Symposium.  I flew in a bit early, so I was excited to find out I had time to walk around the neighborhood around the conference hotel.  I was staying at the Columbia Marriot, so before going on my adventure I asked the concierge if she recommended any local destinations.  She told me if I drove 15-20 minutes I could go to a nice shopping center.  I replied, “I am walking (as my friend Ted Eytan often encourages).”  She looked at me and said, “Well, there is not much around here.”  Then reaching under the counter she said, “You might like this place.”  She handed me a brochure for the Mast General Store.

Then I began my adventure.  The area surrounding the hotel was an aesthetic gem of texture and history.  I past some shops that were shuttered with soap covered windows.  But time and time again, I peered into shops that looked as though they began their life in the 1960’s and had not closed or renovated in the past 50 years.  I walked by the most dapper men’s suit shops and saw jackets that would look so fine on the backs of The Walking Gallery. I counted three wig shops that my friend Tiffany would love. 

I stepped briefly in the Mast general store and it presented like a Cracker Barrel if it opened in Downtown Annapolis, MD.  It was very clean and very well displayed and very touristy.  I did not stay long.  Nearby there were several independent art galleries and a small independent art store.  I was so happy.

Next, I found a wonderful dress shop.  It is called Coral’s. In that shop there was the most helpful staff that showed me glittering dresses of every hue under the sun.  Then they listened to the story of Fred Holliday and learned the reason why I speak for patients. I bought a new dress and then headed out the door to the local beauty shop for a little “maintenance.”

Whist I was in the beauty parlor, I thought of Surgeon General Regina Benjamin as I spoke to the stylist about healthcare and HIT throughout the entire appointment.  When the stylist was helping other clients, I listened to the local radio station play six advertisements/announcements relating to health in South Carolina. 

Then it was time for dinner and it was like old home week!  I saw Christine Bechtel VP of the National Partnership for Women and Families, Jennifer Sweeny also of the National Partnership, Maureen Bisognano President and CEO of IHI, Rick Foster Senior VP of Quality and Safety at the SCHA (South Carolina Hospital Association) and Helen Haskell Founder and President of Mother’s Against Medical Error.

As we sat down for dinner, I noticed a large number of people went to sit at Atul Gawande’s table and Helen’s table, I went over to sit next to Mary Stargel the Administrative Coordinator of SCHA and Cheryl J. Dye a professor at Clemson University.  I was so excited to meet Mary as I have exchanged quite a few emails with her over these past many months.  I learned that not only was Mary handling details of the conference she is also a young mother and enrolled in college course work. Cheryl made a great dinner companion as well and spoke of her work at the Institute for Engaged Aging. It was a delightful evening.  I said thanks to our hosts and headed back to the hotel.

The next day was the first conference day and I painted “Silos.”

In this painting the silos that separate providers, patients and professors are breached.  Hands strain far above the green grass as each person tries to connect with each other.  To the far left is a cowboy.  He is a reference to Atul Gawande’s speech focusing on safe surgeries.  In medicine certain doctors are called “cowboys” when they do not function as team players.  This is alluding to the wild-west where a man is a law unto himself. But Atul recently interviewed a real cowboy and let us know that a working cowboy is more pit crew than lone gun.  He depends on the work of a team to save the cattle in the herd, and even the lowliest member of the team can call out an alarm when things are going wrong.      

The next figure is a nurse holding a child.  Here is the voice most often missing in the conference speaking agenda.  She is trying to balance so much and rarely has someone to speak for her at events like this one.

The next figure is Atul Gawande himself.  His is straining to create a connection between the child and a young mother.  Upon his chest he has a check mark representing the surgery checklist.  During his presentation he showed a great clip from ER showing how very important it is to have a surgery check list. Atul’s goal is to drop surgical death rate below 1%.  He mentioned in the world-wide launch of the surgery checklist the biggest pushback has come from physicians.

Between the nurse and Dr. Gawande is the community.  During the second keynote Eric Coleman, MD said that the majority of healthcare occurs in the community, not in the clinical environment.  If we want great changes in health we must begin at a community level. 

Holding Atul’s other hand is a pregnant woman wearing a shirt that says “39weeks.”  This image referred to a fun video that started our conference day.  In the video staff and children showed the importance of triple aim concepts like hand washing, the surgery check list and postponing elective cesareans.  They tied each film vignette together with an Olympic theme.

Holding hand’s with our pregnant mother is a patient.  The patient is holding out a balanced level.  This is a direct reference to Eric Coleman’s remark that we must meet patients at their level.  This was closely followed by a demand that should be a rallying cry for the e-patient movement.  “We must retire the word non-compliant.”  It is an excuse to give up on a patient, and whenever this word is used it reflects badly on the provider who uses it.

To the patient’s left is Cheryl. J. Dye holding a fishing pole and a FedEx box. The FedEx box is a reference to Eric Coleman’s remark about the word patient at it is used at medical conferences, “Could we just replace the word patient with the word FedEx package and have the same conversation?  I think yes.”  Cheryl holds a fishing pole to reference the old adage that we should not just give the starving man a fish to eat, but instead we must teach him how to fish.  This adage applies to caregivers and patients alike, 42 million caregivers provide 80% of the care for chronically ill.  We must be given the tools and support to do our jobs and be part of the care team.

To Cheryl’s left is Ethel from Maureen Bisognano’s speech.  Ethel was a patient in a care facility who was wasting away after the death of her husband.  She was given more and more pain medications and medicine, but nothing stopped her failure to thrive.  Each day Ethel would make one request of her nurse.  She wanted a dog.  One day her nurse was near an animal rescue on her way to work.  She found a dog for Ethel. Ethel made a miraculous recovery in a matter of weeks.  She now plays the violin for the other residents instead of wanting to die. 

That is the story behind “Silos.”  Next it was time to move my easel to the Awards banquet luncheon. Helen Haskell would hand out Patient Safety Awards in the name of her son Lewis Blackman.  The South Carolina Philharmonic serenaded us with an amazing triumphant eulogy as we ate and I painted “The Fame of Hope.” 

In this painting, I place Lewis within a flame.  He is slightly older than the day he died from a medical error.  His face is brightly lit and turns from the viewer to the woman he holds in his arms.  A young African American woman with babe at breast looks with a worried glance into the eyes of the young man before her.  She and her child represent all the lives saved by the safety initiatives that have been enacted in the name of Lewis.

I painted this while crying for a Lewis I never met, as a friend from his childhood sang:

“I've heard it said

That people come into our lives for a reason

Bringing something we must learn

And we are led

To those who help us most to grow

If we let them

And we help them in return

Well, I don't know if I believe that's true

But I know I'm who I am today

Because I knew you...

Like a comet pulled from orbit

As it passes a sun

Like a stream that meets a boulder

Halfway through the wood
Who can say if I've benn changed for the better?
But because I knew you
I have been changed for good." 

“For Good” from the musical “Wicked.

We must all have hope of a change for good.  That flame of hope burns brightly and is fueled by those who died untimely deaths.

On April 26, I painted the final painting “Awards of Transparency.”

Here the background is filled with an endless expanse of circles.  They are Olympic circles, they are microbes, and they are the dots that represent each one of us.  Before these circles, a figure stands.  She is a medical provider clothed only in the awards of excellence.  She has embraced fully open and transparent care.  She accepts the patient and caregiver as team members and using every tool at her disposal to fight against infection and medical error.

This painting is a challenge.  Could you walk down the street wearing only the awards of excellence in patient safety?  If you did so would you be “clothed?”

I thank the team that brought me out to speak and paint in South Carolina.  I leave inspired by the life of Lewis and the courageous campaign of his mother.  I will do the best connect Silos, because though my arms may be short, my heart is large. I will do my utmost to always remember the awards of transparency are not silver and gold medals, but instead represented by lives lived.