Moving

Recently, I delivered one of my favorite types of speeches: a speech with Dr. Ted Eytan!  On April 26^th, 2013 I delivered a Patient Engagement Panel Speech at The Mid-Atlantic Healthcare Informatics Symposium presented by The Children’s Hospital of Philadelphia or CHOP, as it is known and the Center for Biomedical Informatics, CBMi.  We were invited to present by Anthony Luberti, MD, Medical Director, Biomedical Informatics Education at CHOP and CBMi and Mark A. Diltz, ED. D., Manager, Biomedical Informatics at CHOP and CBMi. 

Did you know I gave my first speech in the world of health on a panel with Ted?  It was “Beyond the PHR: Promoting participation at all levels at all levels: internal and external: patient, family, community.”  5^th World Healthcare Innovation and Technology Congress, Washington, DC November 2009. The years would pass and we would present together informally at many roundtables and formally on many stages. We would always be so much the better for our collaboration.  And just like several speeches in our past Ted came to my rescue at this CHOP event uploading my power point deck through slideshare onto his laptop seconds before I would speak.  Just as hours before, I would paint the water ripples back onto his Walking Gallery jacket that the two years of constant use had made faint.

You see, Ted and I, we help each other.   We are doctor and patient/friends and collaborators.   When I speak on the stage with Ted, I feel that optimism of the child within.  Work becomes play and hope springs eternal.   So I shared my speech on toys, data, childhood and abuse entitled “Thinking Outside the Toy Box.” 

Thinking outside the toy box from Regina Holliday

Ted spoke of patient engagement and environmental stewardship.

2013 6th Annual Mid-Atlantic Informatics Symposium from Ted Eytan

Our Moderator was Alex Fiks, MD from CHOP with a background in urban pediatric care with a focus on HIT (Health Information Technology) integration.  He did a great job of explaining the current HIT landscape.  Also on our panel was Daniel Masys, MD.  His focus was genomics and he redesigned his power point after seeing mine prior to the event. (That was super cool as I have a high school degree from Sapulpa High School and did a speech that compared toys to data and Daniel is an honor graduate from Princeton with 30+ years in biomedical informatics)   His presentation focused on the true ramifications of embracing a learning health system and tracking serendipitous drug response. 

Can you tell how much I loved this panel?  It was a great moment for us and for the hundreds that attended.  After we spoke there was a robust Q&A and I was able to share several important points with the crowd. One is that I have signed a Kaiser Permanente HIPAA waiver so Ted is free to talk about me at whatever venue he chooses. I love to remind folks the default in privacy and security is not lack of access, it is asking the patient what they want.  Some of us want to share!  Secondly, I was able to share the knowledge with audience about Leon Rodriguez and his work in The Office for Civil Rights.  The OCR is helping patients who aredenied lawful access to information and ensuring their rights.

So that was my speaking, but it has been a few years since I have limited myself to only speaking at an event.  I painted as well.  The first painting was entitled “The Story Within.”

This painting was based on the morning presentations and in large part was inspired by the keynote of Daniel R. Masys, MD.  In professorial tone, (I am not talking about a stuffy, somewhat patronizing lecture, but instead that endearing combination hesitancy and passion that an instructor will engage in when he truly loves his topic.) Daniel explained the beauty of genomics and compared it to an encrypted code within technology.  So within my painting swirling curvaceous double helixes arise from within the book of our internal code and small children climb the ladder of time. 

The lower half of this painting focused on concerns raised in the presentation “Provider Perception of the effectiveness of Early Warning System for Sepsis in and Academic Medical Center.”  Here the gold tone background has a lovely etching of black brushwork that one slowly realizes is the word sepsis in constant repetition.  A child lies upon this field and what was once a red bookmark in our book of self has become a thermometer reading a fever spike.  A mother cradles the child’s head, as she worries. Is this only the flu or something far worse?  In the Q&A after the presentation I was able to share information about an EMT pilot in rural Maine that will allow EMT’s to do home visits to complete remote testing.  Happily the ambulances there have the ability to test for sepsis via lactate testing.  

The afternoon painting is entitled “Moving.”  It was largely inspired by a hallway conversation I had with Judy Murphy, RN Deputy National Coordinator for Programs and Policy, Office of the National Coordinator HIT.  She would be our afternoon keynote.  She was telling me about the trials and travails of moving cross-country for her job.  She explained the stress of leaving her husband behind in Wisconsin while she worked inside the beltway.  We commiserated about the challenges of maintaining care coverage as well as data access during a physical move.  As I am moving myself into rural Maryland, I felt her pain acutely. We talked about the need to pack everything and sort later what should be kept and what should go.  That is a very strong metaphor for complete patient access to the Electronic Health Record.  Let me have my data, let me unpack it and let me decide what can be kept and what should be passed on.

So as Judy Spoke of HIE completion and Blue Button capability, I painted a green landscape with small white houses, a large hospital and the roadway spells “HL7.”  Upon the roadways a large moving van has written upon it “HIE moving.”  These are the movers you hire; they handle all the details and get your stuff or your data where it needs to go.  Flying into “the cloud” is another moving truck.  It is an U-Haul with the Blue Button symbol upon it.  See some of us want to carry the load ourselves, our reasons may be varied: be they economic or a desire for control, we still want to download and transmit our data or ourselves.

 

Finally to the far left a patient on a motorcycle speeds by.  I was live tweeting this event and my friend Keith Boone, or @motorcycle_guy on twitter asked, “Where is the motorcycle?”

So we end a day that started by uncoiling the innermost code of the human cell to focusing on the beginning of a girl like me.  I exist because of a motorcycle and a hospital.  My father was in a horrible motorcycle accident in the 1960’s.  In the hospital he met my mother.  They married had three wonderful children.   My father was a hard man who often beat us and taught me by force that we must stand up to injustice.  So I paint, I speak and share the truth that opens eyes and allows tears to flow. 

I loved this day and each person I met.  The greatest compliment I could ever receive came from many of the attendees as they told me my words were moving.

Moving, that is what we must do.  Do not stop; do not give up until we get change in this nation. Data must move and we must be able to unpack it.

 

The Open Door

On Friday I was painting a picture of blood in a park.

It is a beautiful painting that seems at first serene, but as one looks upon it more deeply there is an undercurrent of stress.  It is the jacket painting of Gina Neff.  The title is “Under Pressure. “  I painted this painting under a deadline.  I would be giving it to Gina at the Health Foo gathering in Boston that evening.  I painted while listening to an NPR report an ever-widening lock down in Boston.  There was a manhunt for the two fugitives who were believed to be behind the Boston Marathon bombing several days before.

So I painted blood where it should not be.  Gushing in the park.

Gina Neff suffered from preeclampsia when her twin boys were born.  Her blood pressure was dangerously high after the births and did not return to normal levels for weeks afterward.  There was a danger she would have chronic severely elevated high blood pressure whilst caring for twin newborns.  So she is painted with the stress of pushing two carriages while her blood pounds within her.

Then normality returned to Gina’s life.  One day her heart calmed and the world continued.

As I put the finishing touches on this painting, I listened to the growing tension in Boston.  I checked my email to see if the Health Foo event was still on.  It was still a go, so I threw my clothes in one bag and threw my paints into another.  I then received an email from my friend Susannah Fox who was also going.  I was supposed to room with her that night.  She wrote to say she had re-booked her flight for the following morning. Okay, I thought. Now, I had no place to stay.  Hopefully, the hotel would have spare rooms.  I lugged my bags to the curb and hailed a cab.  Then I called my friend Ted Eytan.   He assured me he was still going, so I responded if the two of us were going to be there, the conference would go on.

When I landed in Boston I checked my email to see that event had been cancelled due to the continued lock down.  I waited for Ted’s plane to land and followed the tweet stream for #healthfoo.  Danielle Cass had just flown in from California and did not relish the idea of heading right back.  When Ted landed we both encouraged Danielle to stay as no matter what.  This event should not be derailed.

That evening the remaining members of Health Foo met at the Royal Sonesta Hotel for light refreshments and drinks.  I walked over to Gina Neff and handed over her new gallery jacket and was told I could room with her that night.  What amazing friends we have within the world of health and social media!  Soon Sara Winge VP of O’Reilly Radar group and co-founder of Foo Camp came carrying her sorrow and a box of books for attendees.  The other materials were locked up inside our closed venue.  We had no nametags, no markers and none of the supplies to rebuild an event from the ground up

That did not stop us.

We borrowed a white board from the hotel and began to plan the next day’s event.  Sara got us started with a few words.  Then we did the traditional introductions of each attendee around the room.  We decided that the next day we would begin by having brunch.  Then we would walk around Boston for a few hours as a Walking Foo (or Walking meeting).  Then we would meet around 2 and hopefully have a venue by then.  Several local attendees would ask around to try to find a place that would allow us to meet with no notice.  We would communicate the real time status of the event on Twitter, Facebook and through texts and anyone who wanted to join us was invited!!

Next we proposed session topics.  We filled the unconference board and decided to present a few ignite speeches without slides. Danielle Cass’s speech about work life balance and her new role at Kaiser Permanente was a type of catharsis for her and many other struggling souls in that room.  She was brilliant.  Our unconference sessions continued until Sara told us the hotel needed the room back and then our excited conversations continued in the hotel lobby well past mid-night.

The next day was Saturday and the Health Foo group split into two parts, some of us eating brunch at Friendly’s and some at Area Four on Main Street.




Very soon each group set out walking.  We were blessed to have 15-year-old Abigail Boone in our group. As her father Keith Boone was willing to let her walk with us while he was in the other group.

We came across the make shift memorial for the fallen MIT officer.  As we stood there taking photos, Abigail drew a small picture and laid it down as a gift upon the growing mound of flowers.  Then we walked away.

We walked as octopus navigates the ocean floor, our form changing and reforming.  I would talk with Ted, then Hugh, then Danielle Cass, then Danielle Gould, then Chach and then Abigail...  Abigail is a student studying forestry and as she walked beside me she explained the growth of calluses on trees and pointed to ‘cancer’ on a trunk.  I walked in awe beside her.  I learned so much from a 15-year-old girl who would have never talked with me if this had been a traditional Health Foo.

Soon we met with the other group coordinating via twitter and Google maps.  Anna Young from Little Devices told us she thought she could get us into a space at MIT.  We walked over to the new space.  It was perfect!  We filled out another unconference planning board Fred Trotter took charge of this process and was amazing.  I attended Ted Eytan’s session on transgender experiences and I began to paint.

This is the painting “The Open Door.”

This is the Boston I saw upon arrival: the streets devoid of cars and the buildings in lock down.  Then the campers begin to walk upon the street as it buckles and bends in a crazy life ride. In the distance there is an open door on a building marked MIT.

One walker holds a transgender hula-hoop.  A hula-hoop is toy that is only enjoyed while in constant motion. Always recalibrating to keep it up.  I thought it a good metaphor for the constant frustrations of the transgender patient seeking medical care and respect. 

Soon Hugh Montgomery would talk with us about climate, global warming and the power of wind energy, explaining that if Tylenol would just become available in smaller milligram tablets it would save energy in manufacture.  

I began to paint the police tape that littered the ground as we walked earlier that day.  It had joined the piles of windblown trash that made Abigail so sad as she saw the waste of our industrial world overlaying the roots of her beloved trees.  We then talked about the future of education and a little red schoolhouse entered the picture.  Soon it was 6:00pm and time to wrap up this conference day.  I went to dinner with Ian Eslick and several other amazing campers and we talked about programming code a good part of the evening.

The next day I met Ted for breakfast and happily looked back on the weekend thus far. We were so glad that we had been able to encourage others to embrace the failure of a plan and build something great from the remains.  I told Ted, this wasn’t that hard for a patient to do; after all, we have nothing upon entering the world of care.   We have no space to call our own; we constantly must move, never sure where we will end up next.  A Health Foo unconference created on the go was nothing new to the patient and family caregiver; it was the care model as we knew

it.

Soon Ted and I met the small Sunday morning crowd at MIT.  Ted proposed a session to teach those who did not know how to tweet the wonders of twitter.  Ted took Hugh Montgomery under his wing and I began explaining Twitter to Gorden Bell.   He then showed me his self-tracking devices, which I tweeted out to the world. By the time an hour had past both gentleman were sending tweets and following accounts.  

I returned to my painting and painted two young men building a go-kart on the left of the painting just as they were doing in the left of the room.   Then I participated in a final session on the importance of tracking heart rate variability.  The session was presented by an engineer and given to two doctors, another engineer and to this artist who only attained a high school degree. 

That was pure Health Foo.

You see Health Foo brings us together: the smart techie, the artist, the doctor, the designer.  In this moment we are all equal. We are all valued and from each of our singular natures we make a greater whole.

So I signed this piece and gave it to Anna Young for her willingness to host us inside her maker space.  She was so happy she began to cry.  Her whole face beamed with joy.  Her blue eyes were an endless sparkling chasm; an open door.  For when Anna unlocked the door to MIT that day she created a moment of communion and we are all greater for it.

As my friend Ted has said, It is the greatest cancelled event I have ever attended.  It was an amazing weekend.  It was a moment to recharge the batteries of so many of us who after weeks or months of travel and teaching needed to feel the embrace of great friends and agile minds.

We found in this gathering the peace that Gina found in her post partum home.  We found the peace that I hope Boston will find as well.  Our hearts calmed and the world continued.   

It is 7:20 here

Yesterday, I painted with a class of second graders.  They were little bundles of captured energy.  Their eyes sparkled and they could not be quiet.  The majority of the class finished the project early and a detail oriented few painstakingly completed theirs.  So I offered to tell the restless ones a story.  It was a classic tale of mirrors, apples and coffins made of glass.  I finished in the customary way.  Their voices joined mine in the refrain, “They lived happily ever after.” 

Life may be filled with great happiness; but often holds an equal measure of sorrow.  Life becomes a story, and every story ends.

On Tuesday January 29th-Wednesday January 30^th, I attended C-TAC (Coalition to Transform Advanced Care) National Summit on AdvancedCare in Washington, DC.  The meeting was held at the Institute of Medicine National Academy of Sciences building at 2101 Constitution Avenue. The building is a lovely Art Nouveau edifice.  The foyer and the marble hall are bedecked with stunning mosaics, carefully maintained murals and early 20^th century woodwork.   The remodeled auditorium is a modern, almost clinical design juxtaposed against the rich warm texture of the rest of the building.  I thought it the perfect venue for our topic of conversation.

When I arrived, I asked where I could set up my easel and paints.  The C-TAC volunteers looked concerned.  Although, I had been invited to attend and exchanged emails with the event planner, they had forgotten this detail.  My friends Ted Eytanhttps://twitter.com/tedeytan and Alex Drane assisted me in finding someone who could determine an appropriate place to paint.  Soon we were talking to one of the facility directors.  She looked worried and said she would have to clear this request.  

She left us and we conversed quietly.  She soon returned to tell us the good news: I could paint if I stayed in the marble floored great hall.  The bad news: I could not hear the speakers from the hall.  So I spent the next two days ducking in and out of the auditorium listening for content, live tweeting remarks and then painting the memory of the day.  

The conference day was well underway by the time I began to paint and tweet.  The topic of the conference was advanced illness care. "Advanced Care" is a new euphemism for “End of Life,” which really confused me at first, because I thought it was some kind of gifted and talented version of healthcare.   As a child who struggled through grade school, AP classes were always out of reach.  I did mange to be in some honors classes though.  Honor courses encouraged deep insight, rather than high scores.  

At 9:30 am the panel presentations began with “Care Journey: Personal Reflections on Advanced Care.”  

Amanda Bennett from Bloomberg News told us about her husband’s 7 years battling kidney cancer.  I listened intrigued.   Our family only had 3 months after the diagnosis of my husband Fred’s kidney cancer.  I began to paint with our stories entwined. 

I painted the two kidneys, the inferior vena cava and the descending aorta as two trees in winter; a tree of life and a tree of knowledge reminding us of a bargain struck so long ago.  To the right I painted Amanda’s experience with her husband’s sickness and death.  He died experiencing over-treatment, with blood draws and tests until the end.  I painted Amanda retreating within her visitor’s chair, completely nude and vulnerable as the machine of medicine chewed upon their life.  A resident stands hesitatingly preparing to tell her the end will come soon.

To the left our family story unfolds.  

Fred spent two months on the roller coaster of curative care and one month in the blessed embrace of hospice care.  He lies upon his bed as we gaze at each other. Our three-year-old son Isaac plays with a toy train beside his Father’s deathbed.

Above within the branches of the tree, a nest is perched where the heart resides.  Within the nest a newborn babe searches for the eyes he can trust, the eyes that see the soul.  As Brad Stuart fromSutter Care at Home reminded the crowd.  We end as we begin, our eyes searching for the ones we love.

I spent the lunch hour painting as folks looked over with curious stares.  One lovely young woman came over to tell me she worked in Health Information Technology and was so glad to see someone she recognized from the world of HIT at this event.  I said I understood and wished that were more of us with attending meetings in HIT, End of Life and Patient Safety. 

Soon Danielle Turnipseed from IOM (Institute of Medicine) came over to the easel while I was talking with Ted Eytan. I told her I hoped to be at Health Data Palooza in June but that would depend on creating a patient registration rate.  She commiserated with us.  Our talk led to mutual enjoyment of the walking meeting.  I said,“OH, I have an idea!!! We could have walking meetings with patients at Health Data Palooza!!! It could be cool!  Sort of like walking speed-dating between patients and tech folks!” Daniele assured me she would bring the idea back to the planning committee.

Soon I left for to pick up Isaac from school and returned on Wednesday for day two.  



Our first keynote speaker was Kathy Greenlee, Assistant Secretary for Aging and Administrator for Community Living US Dept. of Health and Human Services.  She spoke about the work of her office and encouraged all in attendance to come by and meet with her about this important topic.

Wednesday’s first panel was entitled “Empowering the Public to Make Informed Decisions and Plans” Alex Drane was the moderator. By this point I had seen several panel presentations with speakers seated at a black fabric covered table and each keynote speaker was peering over a colossal podium. I was getting frustrated that we were only seeing half of their bodies and often half of the energy of a speaker without such physical shields.  

TED and TEDMED have figured this out; we bare our soul when we speak with our whole bodies.  A seated speaker is only telling half of the story.  Then I began to wonder if this presentation choice was not some grand metaphor.  For this was a conference about end of life but rarely did I hear the word death mentioned.  So on the barren field I painted a seated panel.  Their covered table is a coffin.  Most of the speakers exist as a torso above the covered table, but the angle is such that the last speaker to the right reveals his lower body is a skeleton.  Our surface discussion may not contain the word death but it lingers beneath.

As I stared upon this panel, Alex Drane told us a lovely story from that morning.  Her daughter had discovered that Alex has a cell phone that she will always answer.  Her daughter called her and after a pause asked, “What time is it where you are?”  Like many of us who speak about the future of healthcare Alex flies across the nation empowering others.  Hours as well as miles often divide her family.

Alex smiled and said, “It is 7:20 here.”  There was silence on the line as her daughter did some quick mental math.  Soon she responded with a joyful voice, “It is 7:20 here too!” 

This painting has a name: “It is 7:20 here.”  

And it is.  

We are living in this moment and there is no better time to talk about our wishes with the ones we love.  
So in the foreground of this piece two clock faces look upon each other.  Each says 7:20 and the hands that depict the time are the hands of Alex and her daughter.  The clocks also represent the stylized bulb of an onion.  For as Alex’s daughter could surely tell you “Onions have layers” as does our conversation of this day. 

So in the spooling circles above our clock faces there are pennies. 

For throughout this conversation about the care of those we love there is a thread shines like the sheen of money.  Did you know it now costs more to make a penny than what a penny is worth?  And so it goes at the end of life, when often a life is extended not for the benefit of the patient but for the pocket of another. 


Within the twinning branches pills have become leaves like a pharmaceutical Klimt piece.  The copper pills are the Sutent that extended Amanda’s husband’s life and sit within a shadow box in mine. 

Soon beautiful Amy Berman (nurse and Senior Program Manager at the Hartford Foundation) began to speak, her hair a golden halo.  Her face serene as she told us she lived under a death sentence.  She has stage four inflammatory breast cancer.  This type spreads quickly throughout the body.  When Amy noticed it, it  looked just like an inflamed patch upon her skin.  But it had already spread throughout her body.   She was stage four and there is no successful treatment available.  Her oncologist began to explain an incredibly aggressive course.  There would be a mastectomy; chemotherapy, radiation and they would fight for every hour of her extended life.  She looked at the doctor and enquired, “Why a mastectomy when the cancer has already spread?”  He looked at her nonplussed and replied, “You don’t want to look at it do you?”

Amy could not believe it.  He was recommending cosmetic oncology.

He further added this was the course of treatment he would recommend to any of his patients.  But Amy was not “anybody” and she did not want cookie cutter recommendations or a life that was lived in more pain than was necessary.  Amy wanted to live to her fullest and then wanted a Niagara Falls.  In end stage cancer, patients make a choice. They can choose aggressive care and plummet down a step vertical and then float on a horizontal of lingering pain before death.  Or then can live life on the fast-paced stream without added nausea and pain until they plunge down at once as the end nears.

I painted Amy in her Niagara Falls moment as the wind whips her patient gown around her body. Her stance is sure within her half-barrel and her face upraised to greet her choice with open arms.  As I painted it thus, one attendee said, “I thought the barrels used at Niagara were full barrels.” I responded, “Full barrels are used by those who think they might survive the fall.” 

Soon Bill Hanley from Twin Cities Public Radio spoke.  He followed Kent Wilson from Honoring Choices Minnesota.  They both spoke of the amazing program Honoring Choices and the teachable moments that arrive when PBS works hand in hand with hospitals to create a safe place for conversations about end of life.  This is my second time to see them speak and I represented their great work with a tombstone beside our heart tree.

That should have been the end of the panel, but Alex had offered me two minutes to speak.  I have never spoken before about a painting that was only half-finished, but perhaps that was perfect time to speak about this painting. It continues the metaphor of the half-told tale.  We will never make the strides we need to make in end of life care until we value the end like we value the beginning; until we see hospice cards in the Hallmark isle as much as we see cards that welcome new babies.

I stood upon the stage and explained the painting was a landscape and it was set in winter.  I went on to tell the crowd that I taught preschoolers watercolor landscape for 7 years.  I would say, “See the top of the painting is the sky, the bottom is the ground. See where they seem to meet, that is the horizon line!”  We would start off painting summer because that was easy and filled with blues and greens.  Then fall with its yellows and reds and leaves falling.  Then we would paint winter and the colors are dark and the trees have no leaves and everything is dead.  And this is where many teachers stop when they teach the seasons.  





But we would stop at spring; we would stop with cherry blossoms.

I told them that the painting was inspired by the twining of Amanda Bennett’s story and my own.  She suffered so, as did her husband with no time to say goodbye.  We had the better death at home with friends and family.  My husband and I spoke all night the night before he died back when I thought terminal restlessness was just a Tom Hanks film.

Then I glanced over to Alex and said, “I had been asked say something moving in two minutes and I don’t know if I did, but my husband was able to.  He said goodbye to his sons by performing a puppet show in hospice.  This past fall we marched in the Million Puppet March in Washington DC in Support of PBS.  In support of all that PBS does to educate us.  We carried signs with pictures of my husband in hospice and told folks all about Honoring Choices in Minnesota.”   I told them that is what this is all about.  We can say goodbye with puppets and remember the promise of cherry blossoms.

I painted for the rest of the day with people coming over often to chat. One was Amy.  We hugged and laughed because we were wearing almost identical outfits!  As she said we were sisters from another mother.

Soon we broke into sessions.  I went to the Interfaith Workgroup on Spirituality.  They are looking for suggestions on how to move things forward.  I volunteered the power of the twitterverse to help the cause.  So feel free to join the conversation!

That supper, with no prompting from me, my seven-year-old son Isaac told me he wants the Star Wars Imperial March to play at his funeral. He also wants a graveside service.

I responded, “I want to donate my body to science and then that is usually followed by cremation. So I won’t have a grave.”  His eyebrows rose and he said, "You don't want a tombstone?" I responded, "Nope." He replied "Well, there will be no crayon rubbings of your tombstone then." And proceeded to eat his macaroni.

Now, was that so hard?  

Non-compliant

The woman looked at me and partially asked in jest, “What exactly does Ted do?” 

I am familiar with this question as I am a friend of Ted Eytan and he is not easy to quantify.  Shall I answer in the traditional way?  He is a doctor.  He works as a Director of the Permanente Federation with a focus on emerging technologies, utilization of social media channels and health information technology that supports patients and their family members in achieving an active role in their health journey.  But grasping the true concept of Ted is sort of like holding liquid mercury between one’s fingertips; for like mercury, Ted is fast and reflective.

In May of 2009, I attended a small Health 2.0 meeting in Washington, DC.  My husband was in inpatient hospice and gave me leave to spend a few hours with some amazing people who were trying to change the world of healthcare.  That day I would meet with Christine Kraft, Susannah Fox, Cindy Throop, Claudio Luis Vera, Nancy Shute, Dave deBronkart (via speaker-phone) and I would meet Ted.  Ted seemed so serene within the group. This was my first health meeting and I brought my husband’s dell laptop computer so I would seem professional.  Then I listened to presentations on ehealth.  At 3:15 I spoke and the room went silent as I recounted the horror my husband and I had faced these many weeks. Ted did what Ted does best, he listened to all I had to say then he asked a question: “What was the worst thing that happened?”

I answered, “Lack of access to my husband’s data was the worst thing.” The group then told me to focus on that.  For the past three years I have and I often have fought for patient data access with Ted at my side.  Recently I had the honor of painting Ted’s second jacket in The Walking Gallery.  This jacket would tell his story and it is entitled “Non-Compliant.”

Ted has been a member of The Walking Gallery for the past year. He has walked all over the US wearing Surgeon General Regina Benjamin’s story on his first jacket. He did an amazing job. So many people know more about our Surgeon General because this man was willing to wear the trials of another on his back.

But this jacket is Ted’s story.  Ted is one of those amazing people who question everything: the status quo, the old model and new trends. Through these questions he purifies thought and distills a million pleas for help into a coherent strategy.

Ted looks to the left when others look to the right. This skill is not without price, and Ted has paid again and again. You want know how you learn to see a problem from the outside?  You learn by being the outsider. You learn by years of darkness. You learn bravery while hiding in closets avoiding fists or taunts. You spend years standing out within a crowd, not fitting in. You learn in the lonely time of introspection that these other children see a different world.

Their faces are not finished yet.

When I was young, I loved to paint and draw old men. My friends wondered at my fascination. I said “I love to draw their beautiful pain.”  Ted has one of the most beautiful faces I have ever seen, and he had it as a child. In this painting, I stand behind Ted. My hand rests upon his shoulder. I too look to the side with a worried glance and question what is coming.  I know how it feels to see a problem from the outside.  I know the darkness that Ted has seen.  Yet we smile. Ted firmly replies to any set back, “Love always wins.”  The child in me holds the child in him. Together we are more powerful than we were alone.

We are the non-compliant ones. Do you know what compliant means? It means docile, willing, obedient, manageable and submissive to an excessive degree. Ted may be a doctor. I may be a patient. In this we are one, out and proud.  We are non-compliant. We question authority.  We question folks who say “That is just the way it is.”  We will not stop asking questions.

In April of 2011, I told Ted we should have a gallery show in the Kaiser Permanente Center for Total Health.  He responded with a twinkle in his eye that they would never let us pound a nail in these new walls.  I responded with a glimmer in my eye, “We won’t need nails we will wear the art upon our backs.”

Now 164 jackets later, I can firmly say a patient art advocacy movement was born out of a moment of shared non-compliance.

Love always wins.     

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!