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.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~






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!  

Data Mote: A jacket for Susannah Fox

I knew Susannah Fox in my life before.  I knew Susannah as a really nice Mom who would shop for her children’s toys without an edge of hurry or impatience.  I knew her as a woman long of limb and filled with sunshine. I would see her walk within my store with a sun hat on her head and a smile upon her face.  I would sell her toys, and she would buy them with gracious kindness and then depart. 

That was my idea of Susannah Fox.  I did not know her name.  I did not know her job.  I only knew that she was kind and was a good mother.

On May 27^th 2009, I would meet Susannah again.  I would meet her in a small health 2.0-group meeting that was my diving board into the world of patient advocacy.  She would talk of pie charts and graphs.  She would list statistic after statistic based upon her research at Pew as it applied to patient populations.  She would take all those individual stories and combine them and compress them into the statistics or “hard” data.  

As the months past, I grew to know more about this new Susannah.  I would watch her choose her words carefully.  I would watch a woman who said important things always supported by the facts.  I would see a powerful woman who would often step back into the shadows, like a fair witness or an impartial observer.  She did not advocate, she only told the truth.

This is Susannah’s Jacket: Data Mote.  It is as serene and concise as the data she presents.  There is no mess or unnecessary details in this picture.  It is all angles and planes.  It is all shadow and light. 

In this painting we can see the silhouette of Susannah behind a Japanese Screen.  She is presenting a speech.  She is telling the world the results of the newest Pew research as it applies to health.  She is doing it in shadow.  The data itself gets the spot light.  Susannah is just the vessel from whence the data pours. 

On the right side of the painting a human figure stands.  This is the data mote.  This is the faceless patient.  All unique identifiers have been removed.  She/he/it has been scrubbed.  This is clean data.  But this creature seems rather sad as it holds onto the screen that shields Susannah from view.   I do not think it shall peek though, as its head is lowered in submission.

Behind this figure is a window.  In that window, shines beams of sunlight through a cloud.  This is cloud technology and social media and it is changing things.  This cloud with its bright shinning sun is changing the data space.  Our data mote now has a long shadow.  Perhaps that shadow will tell us more about this creature than we would ever have known before.

I love to think of data.  I love to paint what data means.  But sometimes the way we collect it and scrub it makes me sad. 

When I painted Apples to Apples last year, I looked at quite a few data sets.  I was saddened to see areas where data could not be reported because the population that had the disease or injury was so small as to be identifiable by a hospital data set.  This applies especially to rare disease.  And I thought of Fred.  Kidney cancer is considered a rare type of cancer.  Was Fred’s clinical outcome scrubbed, because to use it would have identified him?  And then I wondered had anyone thought to ask him his wishes?  Did he want to be included regardless of possible identification, if it would save lives?

I went to a Health 2.0 Meet Up in Bethesda not long ago where I asked about data donation.  Can you imagine going to the DMV to renew your ID or your Drivers license and the staff would ask you two questions?  Of course the standard, “Would you like to be an organ donor in the event of your death?”  But what if that was followed by, “Would you like to release the content of your EMR/PHR for the purpose scientific study?”

Can you imagine a world where HIPPA was used in a different way?  I sign a HIPPA release.  I give permission to share my information.  Some folks phrase this as “waiving my rights.”  I disagree.  I am using my right to share data.

I wonder how much our appreciation for data would change, if weren’t quite so clean?  Humans are messy.  Our lives and loves are messy.  Not everything is black and white within medicine.  To make a place for the patient story in the world of HIT, sometimes we have to use names.  Sometimes we have to make personal. 

I think Susannah does her best to make data sets personal, given the limitations within the current form.  I am glad I got to paint this jacket for her and to sign it as an “Adult between the ages of 18-49.”