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Friday, December 21, 2012

The Care and Cleaning of your Walking Gallery Jacket

 If you have joined The Walking Gallery you are probably familiar with this request:

"Send a business jacket. Please do not send jackets made of seersucker, corduroy, knit, denim, leather or stretch fabric, as they are hard to paint on. Absolutely do not send stretch fabric.  I cannot paint on stretch fabric, as the painting will shred.  You can check if a jacket is stretch by trying to pull at the fiber on the horizontal. Also this is a business jacket on purpose, we are painting on the “uniform” of the conference attendee.  Fabrics that work well are poly-blends, linen, cotton and wool. Also you might want to by a jacket a size larger than you usually do as the painting will stiffen the back and make it harder to close the buttons."

So you sent me, or one of the other artists, a jacket and wore it to conference after conference and now it needs to be cleaned. 

The only problem:  There is a painting on your jacket!  Now the painting itself isn't really the problem.  If you have ever stained your clothes with acrylic you know how hard it is to get the paint out.  The problem is the fabric.  Some fabric will bend and warp around the painting if you try to clean them.

Wash It

If your jacket is polyester or a mostly poly blend you can probably wash it on the delicate cycle with cold water and lay flat to dry.  Many of the women’s blazers are poly blends; very few of the men’s jacket are made of this material.

If it is a cotton/poly you can hand wash, pat dry and dry flat.  Again this applies mostly women’s blazers.

My jacket is polyester and washed it at least 12 times with minimal fade of the paint.

After washing it 30 times the fabric began to break down.  The painting is still there, but The fabric really is fraying in spots. 

Spot cleaning.

Men’s jackets are often made with natural fibers and cannot be hand washed.  Some gallery members have spot-cleaned their jackets with Dryel.

Febreze applied to areas of odor can help keep your jacket nice.


You can iron your natural fiber gallery jacket.  Just place a towel on top of painting when you iron in that area. Do not let the iron touch the painting directly; it will melt it. If the jacket itself is not wrinkled and the painting is sometimes you can just warm the painting with a blow dryer to release the wrinkles.

Dry Cleaning

This can be challenging.  You might want to go to a pro shop that handles vintage clothing.  Some of the solvents used in dry cleaning are pretty corrosive. A dry cleaner who works with vintage garments should be able to clean with steam and few harsh chemicals.

But you could be like gallery member Ted Eytan who threw caution to the wind.  He just dropped it off at his cleaners without telling them about the painting.  It has been cleaned several times without harm much harm.  I had to retouch the water ripples. 

Good Luck on cleaning!  And please share your cleaning tips in the comments section with the rest of the gallery.

Thursday, December 13, 2012

Break Out Session at AMIA

On Wednesday, December 12, I attended AMIA’s (American Medical Informatics Association) 7th Annual Invitational Policy Meeting: Health Data Use, Stewardship, and Governance: Ongoing Gaps and Challenges.  The meeting began at 7:30 am and I arrived closer to 9:00 am after getting my two sons off to school. 

When I arrived the speakers were just finishing up an over-view of AHRQ (Agency for Healthcare Research and Quality) activities.  I joined in the twitter stream and was pleased to see the AMIA handle actively tweeting.  E-Patient Dave was the king of the comments and I was able to get a quick snap-shot of what had happened thus far by reading the stream backwards.

Soon we were told we would go to break out sessions based on the dot color on our nametags.  I knew a couple of the people in my session but fellow gallery members Dave deBronkart, Deven McGraw, Ross Martin and Josh Rubin were in other sessions.

So I began to set up my easel in the Green Dot Room and watch folks look at me with quizzical stares.  Soon people began to file in and take their seats around the U-shaped table.  I began to paint “Break Out Session.”

I must admit my painting was affected not just by the dialog in the room but also by prior experience with AMIA.

I was glad to be invited to this event because I had not heard much from AMIA since 2010.  Earlier in this fall I had been asked to attend the AMIA Conference event in Chicago, but I had already made plans to present in Detroit at a TEDx event.  These two invitations were my only interactions with the AMIA organization since presenting at their meeting in Washington, DC in the fall of 2010.

You see I was the patient on the panel at an educational session that year organized by the amazing Lindsey Hoggle.  I was the patient, Ted Eytan was the doctor and Josh Seidman represented the view of the ONC (Office of the National Coordinator of Health Information Technology.)  Our moderator was Rita Kukafka, Associate Professor from Columbia University. 

If you have ever seen me speak, you probably have seen a deck full of paintings.  I think pictures communicate far more deeply than text for many people.  I try to always present with a picture-filled slide deck so my words can be augmented in this way.  But I had been told early on our panel presentation would not be using slide decks.  At some point that changed with me being none the wiser.  When I arrived to speak both Josh and Ted had decks ready to go.

I whispered to Ted that I had no deck.  Ted rapidly pulled up my slideshare account and began downloading a short deck from my past presentations.  While I stood up to present it was just finishing download and it was ready to use by the time I finished my opening remarks.

It is amazing what you can accomplish using technology and working with friends.

The second important thing that happened was we were exposed to an extremely paternal attitude toward patients that was mind-blowing.  Ted, Josh and I found ourselves at odds with our own moderator and a great deal of the crowd.

Sooo… going into this meeting, I must admit a bit of trepidation.  Upon responding to the invitation, I told the organizers I would want to paint on site.  They seemed to not quite understand what that meant, so I wrote a post entitled “Why I Paint on site” as an explanation.

I took part in the morning discussion while painting a brick wall.  Ever heard that phrase beating your head against a brick wall?  At times that is how I felt as my worldview crash against the entrenched philosophy regarding patient engagement that was espoused by many in that room.  I also remembered so many years ago the fears of the brick and mortar bookstores as they saw online sales rapidly encroaching.  I heard a great deal of the same kind of language in this room as I heard at bookstore conferences in the 1990s.

But this was a breakout session so I smashed a hole through the wall.  I shaped the hole like an anvil.  One member of the AMIA team even asked about the hole.  I told her about the anvil shape.  She said, “I am sorry I don’t remember, is the anvil the one you pound with or you pound on?” I responded, “AMIA is the anvil, the one getting pounded.” Right now AMIA is in an anvil time; so many forces in this new world of healthcare are pressing upon it.  

That is all the painting I could finish in the first breakout session. When I heard that our report out team would be creating a slide deck, I offered to email pictures that would correspond with their text including the one I was working on.  As it was not finished I added a question mark to the painting. 

I poured through the photo cache on my iPad and sent 10 emails to Ms Thorpe who was creating the deck.  Then I started getting failure to send messages as her work email considered my images spam.  I told her of the problem, she gave me her personal email.  I repeated the entire process.  I told her when I finished. She responded there would be no time for pictures as they had spent the entire lunch period on text and they would need to present in ten minutes and her computer was not hooked up to WiFi.

I sighed and thought of Ted. 

He had done similar work two years ago in less than 5 minutes.  I attend so many venues where organizers ask, “How can we better communicate with patients?” Then presenters create complex text-filled decks that list things like plain language and visuals but don’t actually incorporate them.

In the afternoon breakout, I continued to paint.  We were talking in this session about a vision of the future in 5-10 years.  I painted a man in the orange uniform of a prisoner with those numbers emblazoned upon his chest, because that was the level of excitement in the room.  

I want to talk about 5-10 years out, Exclamation Point!  

For patients this could be a great new tomorrow.  A tomorrow with peer review having a new meeting, as in approved by the patients in patient communities like ACOR or Patients Like Me.  A future where Blue Button has been widely adopted and folks are sharing data and utilizing third party apps.  A future where the default assumption is not that patient’s want their data private to the point of personal inaccessibility, but instead an understanding that it is their choice to share that data or not.

Also in the anvil hole a father and his daughter stand preparing to step through.  A female patient turns her back to the viewer and stares into the abyss.  We are headed to the future, but not equally.  Some will look forward and some will look back.  

Around these figures graffiti tags mark the wall.  To the right we see AMIA itself.  This logo with it’s futuristic styling so new that the paint runs down the wall. Below this is a key with a wifi signal free to use and the phrase please copy me. Below that we see Big Data and ponder what that means. 

To the far left above the word Patients 2.0 is scrawled upon the bricks for the patients of the future are coming.  Below that the eye in HIT has a blue button for an Iris: the opening that allows us to see.  Finally scrawled below that is the word standards.  Which standard?   I think we have yet to decide.

If you look to the right in the distance there is a parking lot.  This space is for the topics that did not fit within the break out session parameters. I hope that they will get to drive into another discussion.

This morning I was unable to attend day 2 as my eldest son is ill.  Josh Rubin emailed me from the session to tell me that they showed the original picture from session one with the question mark.  They were unsure of the title…

I posted the finished picture yesterday on Twitter when I left a little before 5:00 pm with it’s title, I just don’t think anyone in my session was following the twitter hashtag for #AMIApolicy.  Which is sad because if you want to meet patients were they are, Twitter is a good place to start.

Wednesday, December 12, 2012

"Root Certificate" at ONC Annual Meeting 2012

This week is one of my wilder ones and I will wear many hats.

On Monday I worked at the toy store Barstons Child’s Play. I got into several conversations that compared the advances in toy technology to advances in medicine. Throughout the morning, I continued to help people that I have helped for 18 years. The holiday season a Child’s Play can be hectic, but there is a joy to seeing faces that are missed.  For many of our clients are grown now, yet their parents come back at this one time of year.  This is our annual meeting and it is joyful.

But Tuesday came, away went my role as a toy advisor.  I grabbed my brushes and paint and rushed to day one of the ONC (Office of the National Coordinator of Health Information Technology) annual meeting 2012.  When I arrived they had a hard time finding my nametag.  Was I a speaker?  Well, yes but not today.  A stakeholder?  In my opinion a stakeholder is a title for Buffy the Vampire slayer.  Finally they found my tag in the press section of nametags. 
This day was a pre-meeting day and sessions focused on various topics.  I arrived late as I also wear a Mom hat and had to get my kids to school.  Since I was late, I could not attend the State HIE morning session it was standing room only. 

I walked further down the hall and saw there was plenty of space in the workforce development session.  There I set up my easel and began to paint “Root Certificate.”

In this painting a graduate is walking on the path to her future.  In front of her is a sign: HIT ahead.  She has taken many courses in informatics, but will she find a job?  Many of those on the workforce panel complained about the lack of access to work experience on vender systems for new graduates.  In her hand the graduate holds a hothouse flower.  This poinsettia is lovely but can it survive the environment outside the walls of academia? 

Beside the graduate a provider holds a light bulb with a seed inside.  This is a slide reference from a speech by Jon White from AHRQ.  What flowering ideas are we growing?

Soon we broke for lunch and a few brave souls came over to the easel to see what I was painting.  One lady seemed a bit confused, she said, “I thought you were painting this session.” I suppose she was thinking I painted like an artist in court.  I said, “I did paint your session, but I use symbolism and allegory to make a point.”

Next I set up in the State HIE room.  Keith Boone and his teen daughter Abigail came by and asked me to attend the ABBI session later that afternoon.  I said I would love to attend a session focused on the Automating Blue Button Initiative.

After the lunch break people began to stream in the State HIE room.  I had a chance to speak with presenter Brennan O’Banion from the Kentucky HIT Exchange.  I also got a chance to talk briefly with presenter Carol Robinson, Oregon State Coordinator, HIT.  If you have not gotten to meet Carol, you should really make a point of doing so.  She is a firecracker.

Ross Martin was the moderator.  This was his last official responsibility working for Deloitte and he was amazing.  He was also wearing his Walking Gallery jacket that depicted his lovely wife Kym dancing before a background of cancer cells.  A fight she once fought and fights again this day.

As the panel spoke of adoption and the role of HIT, I began to paint the landscape of the acronyms we hear each day. 

Soon Abigail can to help me carry supplies to the ABBI meeting.  We walked through corridor after corridor; soon we came to an out of the way room filled with wonderful people.  The CMS innovators were there as was Claudia Williams, Lygeia Ricciardi, Damon Davis, Peter Levin and Farzad Mostashari.  I set up in the back and continued to paint.

Farzad shared with us the story of his Thanksgiving.  After the meal was finished, Farzad asked his parents if they would like to see their blue button data.  As they were on Medicare, Farzad was able to log on and get the download in its raw form.  Then he remembered the presentation by Bettina Experton about I-Blue Button app by Humetrix.  So he called her on Thanksgiving.  She answered his questions and Farzad used i-Blue Button for his family.  The next day his father’s eye hurt.  They could have gone to ER but Farzad knew full well the chance of seeing an on call ophthalmologist in the ER on the day after Thanksgiving was slim to none.  So they used ZocDoc and were able to get an appointment that morning.  When Farzad’s dad saw the doctor he was able to bring up his medical record on his smart phone because of i-Blue Button.

That was an amazing story and I painted it into the picture on the back of our graduate’s regalia.  There the blue button acts as a dinner plate with a place setting of a knife, fork and spoon.  Prepare to feast upon data.  It could change your life.

Standards and interoperability was also discussed at the ABBI meeting.  So HL7 entered the picture.  Then discussion moved into security and the painting was named “Root certificate.”  Soon a friend of mine named Patrick Grant came to the meeting.   I met Patrick at the Learning Health System Summit in Washington DC back in May.  He is working on creating a patient data access co-op.  He flew all the way from Florida to meet the amazing minds at the ONC meeting.

Soon it was time to pack up my paints and brushes and get my son from school.  I was so glad to have a chance to attend the annual meeting.  The folks at the ONC shine hopeful and bright.  They are planting seeds and growing flowers and it is our job to make sure those flowers survive in the often-harsh reality of the healthcare landscape. 

Sunday, December 2, 2012

Partnership for Patients a bed time story

Every night as my six-year-old son Isaac goes to bed, we say a prayer that he created at the age of 4.  He also designed the way we say it.  We must take turns.

(I am in red and he is in blue)
Thank you God for building us and loving us and caring for us, A-men.

But before we can say our prayer, he wants me to tell a story.  He wants a happy story.  He is very clear about this.  Not a story with a happy ending, no he wants a happy everything.  He says, “Mom, it must have a happy beginning, middle and end.”

I used to try to reason with him.  I would talk about rising conflict, plot, antagonists and protagonists.  He would look at me sadly and I would remember he is 6 years old and for half of his life he has had no Father and Mommy travels a lot for work.  So, I would tell a happy story.  A day where everything goes right and we go to sleep feeling loved and cherished.  It might not have much of a plot but I think so many patients would be happy with such story.

I have painted over 200 paintings in the last year and so many of them are sad paintings.  Many professionals who work in healthcare ask if I ever paint happy pictures. I respond, “Yes, sometimes patients tell me a happy story or I attend a conference that truly embraces us.”

Yesterday was a happy day. 

It was the Partnership for Patients 6th Quarterly Meeting: Authentically Engaging Patients and Their Families to Amplify, Augment and Accelerate Progress.  The meeting was held in the offices of the National Quality Forum.  I painted this painting: “Organic Change.”

And this is a happy story.

Once there was a land
cared for by people who wanted to make the world a better place and a man named Paul McGann and a man named Dennis Wagner led them. 

They wanted patients to live a good life and they worked very hard in a castle called CMS.

Occasionally these people would make a mistake while reaching out to those who had been harmed, but they never gave up and always tried to do a better job listening and helping others.  They worked with an amazing woman named Teresa Titus-Howard who went halfway across the kingdom to meet with patients.  Some of the people who worked at CMS had been doing the same things the same ways for so long that sometimes they stuck like statues or like the Tin Man in the Wizard of OZ.  The people in charge of this land had so much work to do they hired knights and ladies from other lands to help. 

The knights and ladies of Weber Shandwick offered their assistance.  The lovely lady Katherine Siedlecki, lady Jennifer McCormick and lady Karen Oliver and lady Lauren Tate , led the team.  They were not used to the customs of many of the patient communities and at first it was hard to understand each other.  But they worked hard to explain the patient views to the kind folks at CMS.  

They worked hard to explain the CMS strategy to the patients and communication grew like a flowers grow and the reaching vines began to connect with distant communities.

So people of CMS and ladies of Weber Shandwick invited everyone to a meeting.  

We sat at round tables because 
no one was more important than anyone else.  

At every table were patients and partners sitting in harmony.   I painted their tables as trees.  Some people wondered at that!  

What messy chaordic tables!  

But they were the best kind of tables for this meeting because they represent organic change.  Debra Ness from National Partnership for Women and Families was first speaker and she said we will get change faster is we include patients at the table.  The morning part of the meeting was formal and those people who were a little stiff from years of doing the same thing felt very comfortable during the morning.  The afternoon was an open space or an unconference session and even though some people creaked to move so much everyone did it without complaint.

I was glad to see John O'Brien at the table.  He works at the at CMS and he invited me to the first meeting of Partnership for Patients in the summer of 2011.  At that meeting I was the only patient in the room.  
 John is a kind man with a background in pharmacy he tries very hard to help patients.  In this painting he looks attentively at the patient at the podium while wearing his pinstripe suit and his dashing bow tie.

He sits beside a pharmacist who is trying to help patients with their pills and does not want to waste precious time when patient education could occur.

On John's other side an elderly patient sits beside a small child.  They represent patient populations that often have little voice in offering opinions on their care.

Finally, across from John a housekeeper lifts her mop and bucket, happy to be included at the table.

There were patients, patients everywhere!   I am sure if I try to name them all I will miss a few, so hopefully someone will help me in the comment section: Evelyn McKnight, Lisa Morrise,  Marjorie Mitchell, Helen Haskell, Pat Mastors Lori Nerbonne,  Armando Nahum, Martin Hatlie, Chrissie Blackburn, Becky Martins,  Beth Waldron, Regina Greer Smith and Knitasha Washington were seeded throughout the crowd and came from many different regions in the US.  I depicted them around a table each holding the parts to a car. One was holding the tire, one a chassis and even though she was not at this meeting I added Sue Sheridan from PCORI holding a steering wheel.  So many times in the past campaigns each held a little part of the solution but no one knew what the other organizations were doing, but here we were coming together. Patients were wanting to speak at the HEN's and I reminded the CMS folks about the work of Chuck Denham, TMIT and SpeakerLink.  Many patients were listed on SpeakerLink that could speak out nation wide.

When we began the unconference format, the group near me spoke about how some patients would do better if they could only be with their pets.  So a little dog joined the painting.  Some of the participants flew from group to group at the unconference and so I painted a swarm of pollinating bees. 

As the meeting closed we began to talk about the name we call ourselves.  
Are we advocates, advisors or activists?

Do we claim a different name or take the name we are given and twist it into the title it needs to be?

Is A for amplify, augment and accelerate?  Or is it merely Alpha, the beginning that will lead us toward a glorious end? It leads us to a future where we can reach our goal of eliminating harm and embracing happiness.

Here is a happy story.  

A story where a patient stands at the podium, and speaks from the waiting room to the boardroom.  Patients, as a Johnny Appleseed,  seeding a future where we all sit around the table.  We all have access to knowledge once forbidden.

Some attendees called the first meeting of the Partnership for Patients an Altar Call.  This meeting was one better. It was the Alpha and Omega.  Patients and Partners, more than the sum of its parts.  

But I cannot say it had a happy ending yet, 

because we are still living the story.

Good night.  God bless.