Still Life

As a busy parent, I often forget to sit upon the floor and play toys for a moment.  Sometimes after two or three meetings in one day, I will be racing home to pick up my little six year-old Isaac from his extended day program.  He will smile at me with joy when I enter the room, he will race into my arms and say that he loves me.

And I will take a breath. 

I will slow down and as we leave the facility. We will stop to smell the peonies, and rejoice in the moment.  At this moment there is sunlight and joy, beauty and flowers, and life stills.

We are making a picture in time created by two beautiful souls, one entwining the other creating a masterpiece.

Each day this drama is retold as countless parents and countless children march upon their paths of life.  Often these paths will diverge, but sometimes gloriously they come together.

This is the jacket story of Leela.  She is Lygeia Ricciardi’s daughter seven year-old daughter.  Many times throughout the year Leela will attend HIT (health information technology) meetings as a painting on her mother’s back.  She is one of two beautiful children on Lygeia’s jacket painting: “Rosetta Stone.”  Lygeia is the Director of Consumer Engagement in the Office of the National Coordinator of Health Information Technology. 

On June 4^th Leela officially joined The Walking Gallery with her masterpiece: “Fruit is Healthy.”

Leela painted this on her very own jacket for the entire world to see.  She walked bravely and proudly in a crowd of adults.  She is one of three children who have joined the gallery by painting on their own jackets.  

Her jacket is joyful.  It represents what healthcare should be.  It is colorful healthy choices.  It is moment in time.  It is a still life.  This moment is so bright.  Lygeia and Leela stand side by side each encouraging healthy food choices, by the breast or by the bowl.

And for moment in our race to improve care, life stills.

Welcome to The Walking Gallery Leela.

Life, Death and the Clearance Rack

In 1997, I was hired as the art department manager of the Jayhawk Bookstore in Lawrence, Kansas.  I learned the college book business under the tutelage of Bill Muggy.  Bill had been working in the college books for over 20 years at that point.  He did a little of everything at the store.  He ordered some products, created advertisements and was always looking for the next fad or hook that would engage the public and remind them to shop at our store.

That is how I met Nathan Muggy, Bill's son.  Nathan was in his early twenties and was a quiet and introspective artist.  He would occasionally work at the store, but he would not stay long. Often Bill would bring him in to work on ad copy or during book rush. 

In the fall off 1997 the newest trend was South Park.  Bill decided to connect with the incoming youth with this new animation style.  So Nathan labored long hours creating a commercial short for the store in the South Park Style.  As I enjoyed both art and South Park, Nathan and I talked quite a bit.  After about two weeks Nathan finished the animation work and was gone again. Then Bill purchased an amazing quantity of South Park Shirts at the NACS (National Association of College Stores) conference that spring.

Now, Jayhawk bookstore was very good at selling Jayhawk merchandise, but we were not famous for trendy fashion choices.  So we sold some of those shirts 1998.  By 1999 the gift dept. staff were eager to place them on the clearance rack.

In 1997 the catch phrase was Titanic's "I am king of the world!" Or "You killed Kenny," if you watched South Park.  Every child who could walk was begging for a razor scooter and folks were starting to choose that new-fangled Google as their preferred web browser. 

And in 1997 Michael Millenson wrote Demanding Medical Excellence.  It is well-researched book written in an amazingly readable style.  It is a tome dedicated to quality and safety and the future of medicine. Michael is a journalist who wrote for the Chicago Tribune covering health matters.  His knowledge is both broad and deep.  Prior to the publication of IOM's report: "To Err is Human," Michael was already sounding the warning bell.  He addresses topic after topic that still resonates in our current medical landscape.

Michael was well upon his life course in the world health, whilst I sold art supplies and books. Rarely would my life intersect with thoughts of life or death and system of medicine. 

Then In 1999 Nathan Muggy died.

Bill called me in the early morning that spring day.  He said that Nathan had been in an automobile and drove off the side of a mountain.  Nathan had hit his head. All of this had happened in the Virgin Islands and Bill would have to fly there later that day to help his son. 

When Bill arrived Nathan was unconscious and badly injured.  His brain was swelling.  Nathan lingered for a few days.  When it looked like death was inevitable, Bill tried to organize an organ donation team, so Nathan's death would not be in vain.  They were not prepared for such requests at the remote hospital and Nathan died without being a donor as he wished.

In 2000, we placed the last of the South Park Shirts on sale and I cried.  I cried that those shirts were still there and Nathan was not. 

It is now 2012 and so many years have come and gone.  So many trends have passed us by.  So this is Michael's Jacket. He stands as a still point in time.  The paint of time smears by as Michael stands defiantly.  In his hands he holds his book, now entitled Still Demanding Medical Excellence. 

 


To the left of the painting a pay phone still has a place of honor on the wall.  A young person rides a scooter by combining trends from years apart as he wears both a South Park T-shirt and crocs shoes.  




To the right a young man stands wearing a trench coat.  Is that Neo from the Matrix or student from Columbine High School? A woman in foreground eagerly texts as she walks, while in the background the twin towers of The World Trade Center still define the New York Skyline.

 


So much life, so much death in the last 15 years and Michael still rings the warning bell.  I dare all of you who read this, do something.  Please do something to prevent healthcare harm.  Join the participatory medicine movement, demand excellence within medicine. Do it now, before one more trend hits the clearance rack or one more person dies.    

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.