#Cinderblocks4 Coming May 18-20, 2017!

#Cinderblocks4:The Walking Gallery Gathers is a patient led medical conference held in the beautiful mountains of rural Western Maryland.  This is a destination event and the spirit of the conference is Burning Man meets healthcare.

Now some of you may not know why I use the hashtag #Cinderblocks4, so I thought a refresher might be in order."When I was a child I went to an elementary school that had few resources.  In fifth grade, someone donated a large amount of books to our class.  We were very pleased to have them, but we had no bookshelves on which to place them.  My teacher contacted the local lumberyard and requested they donate some 2x4's and cinderblocks so we could make shelves.  The lumberyard manger said yes, with one caveat, we would have to pick up the supplies.

That year our fifth grade class had a field trip.  

We left the school as a class and walked to the lumberyard.  Some of us grabbed the 2x4's and some of us grabbed cinderblocks.  We walked all the way back to school and up three flights of stairs.  Then we assembled those shelves and placed the books upon them.  We stood back and looked proudly at our work.  I cannot believe there was a class anywhere else in the entire nation who cherished their bookshelves as much as we did ours.  We loved those shelves because we overcame adversity and made that which we needed.  It wasn't pretty, it wasn’t perfect, but it was ours."

So the really cool thing about this event, is that it isn't in the grand ballroom of some four-star hotel. We meet at a restaurant that was an inn on our nation's first highway.  We meet by a bridge that was built over 200 years ago, and like that bridge we are connecting people that are separated by economic class, geographic distance, and cultural divide.  

We are patient and provider as partners. 

You can become a sponsor for the event through our crowdfund here:

https://www.gofundme.com/cinderblocks4-art-and-medicine

You can register to attend here: https://www.eventbrite.com/e/cinderblocks4the-walking-gallery-gathers-tickets-30699789898

How will you get to Grantsville, MD?

By Car:

The location is about 1 ½ hours by car from Pittsburgh or 2 ½ hours from DC/Baltimore.

By Train:

The Amtrak train from DC has a daily stop in nearby Cumberland, which is about 20 minutes away.

Where do we stay?

Meshach Browning's Cabins on the River.  These cabins are right next to Penn Alps and come in variety of styles and sizes that allow for 2-6 guests.    

The Casselman Inn This hotel is in the heart of town and in walking distance to most of our activities.  It is a historic drover's hotel and has more space in a motel addition.   

The Comfort Inn This hotel is right off 68 and is about three minutes away from town center by car.

Please let Regina Holliday know if you would rather be placed with a local host family.  We also have a few rooms available in Salt & Pepper Studios. 

Who will be there?

We expect to see a very diverse crowd at this event. There will be people who work in the government, healthcare, crowdfunding and technology.  We expect to see patients, patient advocates, activists and caregivers.  Artists, performers and dancers will be attending as well as local individuals very interested in the intersection of art, policy and health.

Who are our Speakers?

So far we have:

Esther Fischer, Adult Protective Services Specialist, Oklahoma Department of Human Services, Enid, Oklahoma
Jessica Gada, Art Therapist, Bethesda, MD
Brandon Kling, Head Cheesemaker at High Country Creamery, Grantsville, MD

Joleen Chambers, founder of Failed Implant Device Alliance, will present on Failed Medical Devices and Patient Safety, Dallas, Texas

Robb Fulks, Patient Speaker focusing on patients falling through the cracks in our current political climate, Reading, PA
Jessica Wilhelm, Field Representative for Woodman Life, Avilton, MD
Jay Roberts, Working on being kind to everyone, Charlotte, South Carolina

Mark Boucot, CEO Garrett Regional Medical Center, Oakland, MD

Paul Edwards, Garrett County Commissioner, Grantsville, MD

Ladd Everitt, One Pulse for America, Washington, DC

Julia Musselwhite, Park Ranger, Flinstone MD

Courtney Mazza, Walking Gallery Artist and Singer in the Threshold Choir, Silver Spring, MD

Felicia Schrock, Registered Nurse, Grantsville, MD

Andrew Yoder, Life Coach, Grantsville MD

Mary Anne Sterling, Co-Founder Connected Health Resources, Ashburn, Virginia

Julie Arnheim, Wellness Thinker, Pittsburgh, PA

Christopher Elliott, Residential Advisor Lead for the State of Maryland, Grantsville, MD

Donna Jo Brenneman, Executive Director of Garrett County Hospice, Oakland MD

Mark Scrimshire, Entrepreneur in residence at HHS, Baltimore, MD

Kimi-Scott McGreevy, Director of Grant Development Garrett Regional Medical Center, Oakland MD

Angela Radcliffe, FCB Health, Philadelphia, PA

Alex Fair, Medstartr, New York, NY

Ashley Elliott, Patient Speaker focusing on addiction, Grantsville, MD

Joshua Rubin, Program Officer for Research and Development, Learning Health System, University of Michigan School of Information

Charles Wilt, Mountain Laurel Medical Center, Oakland, MD

Sharon J. Burton, Reiki Practitioner and artist, Washington DC

Abby Bott, Healthcare Advocate, Washington, DC

Erika Hanson Brown, Founder of Colontown, Washington, DC

Matthew Listiak, Filmaker, Los Angelos, CA

Mélanie Péron, CEO and Founder, L'Effet Papillon, Laval France

Performers:

Terah Crawford, Oakland, MD

Marsha Goodman-Wood, Washington, DC

Aaron Smith, Finzel, MD

What is the agenda?

Pre-conference: Wednesday, May 17, 2017

PechaKucha Accident Visits Grantsville! 7-9pm, The Cornucopia Café

Pechakucha is a fun & concise presentation style. PechaKucha nights have 8-12 speakers who follow a 20 slides 20 seconds pattern. 

Conference Day 1: Thursday, May 18, 2017

We will meet at 8:00 am at Penn Alps Restaurant for breakfast and our general sessions.  Then we will do breakout sessions until lunch.  The afternoon will also be filled with breakout sessions. The formal sessions will end at 5:00pm.

6:00pm to 8:00pm Salt and Pepper Studios: Home of the Walking Gallery

On Thursday, May 18^th at 6:00pm Conference attendees are invited to come to 189 Main Street in Grantsville and see the art center that Regina Holliday has created.  Refreshments will be provided and the event is free and open to the public.  

Conference Day 2: Friday, May 19, 
2017
Another conference day begins!  At 8:00 am meet at Penn Alps Restaurant and Meeting Center for breakfast and our general session.  Then we will do breakout sessions until lunch.  At Lunch time we will have a field trip to High Country Creamery and watch cheese being made.. The afternoon will also be filled with breakout sessions at Penn Alps.

The Big Tent in field in the Little Crossings Field by the Cornucopia Cafe
3:00-4:00 Facilitated Art Project by the Lilly Clinical Innovation team
4:00-5:00 Additional educational presentations.

The Walking Gallery Gathers 6:00-10:00pm 

At 6:00 pm we will gather at the Casselman River Bridge for a group shot of The Walking Gallery and the conference attendees.   We will then walk across the historic bridge to the Little Crossings field by Spruce Artisan Village.   

There we will have our evening event under the big tent; this portion of the conference event is open to the public and does not require tickets. Local musicians will play as well as performers from around the country.  We will also honor Jess Jacobs and Jerry Matczak, the members of the Walking Gallery that died since our last gathering.  We also honor Dave Wilt who helped build Salt and Pepper Studios: Home of the Walking Gallery. 

Conference Day 3: Saturday, May 20, 8:00-12:00 

8:00 am meet at Penn Alps Restaurant and Meeting Center for breakfast and our general session.  This day we will break into small groups to work on mentoring and individual coaching sessions.  General Conference close at noon.   Little Crossings will also host juried artists and local food venders for an Artisan and Epicurean Faire on this day.  Shuttle service will be available from town to the Penn Alps Campus.  

Hope

This was the third time I circled the perimeter of the College of New Jersey looking for the visitor parking lot.  Most of the parking lots were an expanse of ice and snow on February 19^th.  I gave up and asked the campus police where was a safe place I could park.  I was very happy that I was able to drive to the venue.  Back in July when I had been invited to present, I did not have a driver’s license.  I would spend the entire summer in driver’s classes and after trying to pass my Maryland’s driving test three times; I finally succeeded on the 4^th try in September.   

Needless to say, I am not very good at driving.

My family was a little worried that I was going to drive across Pennsylvania and into New Jersey as a relatively new driver.  After I hit my first New Jersey pothole going 55 miles an hour, I was pretty worried too.  I arrived in New Jersey on the evening of the 18^th and stayed with the family of John Phelan as they were willing to play host.  John is a member of The Walking Gallery.He is also the founder and CEO of Zweena.  I really enjoyed talking with him about Health Information Technology while I was visiting.  I am thankful to his family for tolerating our mutual interest in all things data.

On the 19^th I parked my car and rolled my suitcase full of art supplies to the student union.  I set up my easel and began to paint.  Since I knew little about this venue I began a Gallery jacket.  Like many venues I have attended, the custodial staff was the first to approach me and ask questions.  Next the curious students walked up to me and began to speak.  I was so happy the students were asking questions.  All too soon, I needed to put away my easel and walk to class to begin my lecture.

Yifeng Hu, a faculty member of the Department of Communication Studies, invited me to guest lecture and this is how she invited me:

“First, let me briefly introduce myself. I am an assistant professor at The College of New Jersey (in Ewing, NJ, between Trenton and Princeton).  I got to "know" you through two NPR articles and then your blog. I wanted to contact you for two reasons. First, as an individual, I am so with you and your work!

Second, as a professor who teaches an advanced undergraduate course titled "New Media and Health Communication," I can't help but inviting you, or attempting to invite you to give a speech (or a virtual speech via Skype etc) to my class, because some topics we survey in the class are so relevant to what you have done and are doing, e.g., patient doing online health search or bringing online health information to the doctor, EMR. I teach this course once a year in the spring semester; if you are interested in the idea, I will contact you again when we approach the end of this year.

Meanwhile, if you wish, I think our bigger campus community will benefit a lot from your talk. If you wish to give a campus wide talk, we can do so…”

I keep my tone even and did not over-power Yifeng’s classroom as I began to talk.  The students were well prepared to hear me speak.  Yifeng had encouraged all of them to write on my blog and read my posts. They asked wonderful questions and one students was so engaged she became part of my painting the following day.  She became the woman whose gown spirals away within the coil of a question mark

This is the painting “Hope.”

I painted this in the student union.  It began with a maelstrom of clouds. Students came up to me throughout the day and asked about the significance of the painting.  I explained the spiral of energy leading to a question as an image of their college experience.  After awhile I spoke to a young man who was trying to raise funds for an art installation.  I told him about the power of crowdfunding.  He is the man spraying the word “Hope.” The African American woman in the painting was a student who happened by and was happy to see me painting.  All the figures seem endowed with great energy.

On February 20^th I gave a large lecture before various departments.  In this speech I was my usual emotive self and the audience responded accordingly.  I was also a bit loud.  At one point a fellow came from the outside café in the hope of hushing me.  That is rather hard to do as many people have realized over the years.

I wrapped up my speech and thanked everyone especially Yifeng.  She had been such a gracious host.  Do you know she plays the violin?  She is quite accomplished at it.  I hope someday to introduce her the Tom Delbanco, MD who works on the Open Notes project.  As he also plays and appreciates the power of the whole note just as Yifeng appreciates to hope her students have in the future to come.   

“Health Data Palooza and the Art of the New Aesthetic?”

This was the first year I was able to attend HDI (Health Data Innovation)/Health Data Palooza in person.  HDI is a joint effort of the IOM, CTO Todd Park and HHS.  It is a great coming together of open data sets, innovative thinkers, investors and hacktivists.  

This year I had a booth!  If you went to the exhibition floor you would pass row upon row of mobile health apps and health data interfaces. If you walked by those, to the end of the row, you would find me in booth #31. 

I was painting data on a canvas while beside my easel was Don Fluckinger’s unfinished Walking Gallery jacket depicting the classic download spinner icon.

This was my first time at HDI as a walking talking human being, but I have attended every HDI as a form of painted data access.

I was an entrant in the first Health Data Innovation event in June 2010. I received an honorable mention for my painting Apples to Apples that compared clinical data sets to patient satisfaction.

  
HCAHPS Visualization from Eidolon Films on Vimeo.

The entry was a video, as the painting process was captured in real time by filmmakers Tessa Moran and Ben Crosbie on a busy street in Washington DC.  My research partner in the endeavor was the amazing Ted Eytan, MD.  No, I did not get to attend in person in June of 2010, but was well represented on stage that day by a painting on Roni Zeiger’s back.

In June of 2011, I once again missed the opportunity to attend HDI.   The window of time to reserve a ticket was very small.  By the time I was aware of the event, the event was full.  HDI:2 was a couple of days after the first gathering of The Walking Gallery in Washington DC.  There were several members of The Walking Gallery who attended.  Walking art would represent me.

This year I waited with baited breath for registration to open and reserved my ticket on day one.  I communicated heavily with Danielle Turpinseed from IOM and Aman Bahndari from the office of the CTO about my desire to paint onsite as part of The Walking Gallery.  They said I would be allowed to paint in the large plenary session room in the mornings and then in the exhibition hall in the afternoons.

This is the painting I created: “Health Data Palooza.”

I painted the sky and landscape of this piece in the back of the room.  It was very hard to paint, as the lights were so low.  I could barely tell the difference between the colors of my palette; often I would use my smart phone as a flashlight to distinguish color and tone. 

In this darkness I painted the binary landscape that supports us all and I painted a data portal that is the logo of HDI.  After three hours of trying to see with little light I had a pounding headache.  I took down my easel and moved to the exhibition floor to paint the details of this piece.

In the center of this painting, Todd Park stands with an energetic confidence as he shows the viewer a piece of paper: “I did not get the MEMO that this was impossible.”  In his other hand he hold the magic hat of the oncoming tides of open data.



To his right, Alisa Hughley, from enBloom Media, writes notes about his speech upon her Ipad while wearing her freshly painted gallery jacket. While further back in the background, Bryne Potter from Private Practice shows a patient facing EHR designed for use by a midwife and her clients.

Next, I painted about The Community Health Dashboard being used by the NYC Dept. of Health and Mental Hygiene.  The speaker mentioned the positive results they had seen in lowering Cholesterol by using local Churches as a check in site for data collection.

Then Jon Bon Jovi introduced Project Reach App challenge.  He told the assembled why he was inspired to do this work.  He was part of the closing shift at his Soul Kitchen, a place where people pay what they can to eat, a place where the stigma of charity is replaced by the pride of a job well done.  That night they had an amazing dishwasher, who kept washing as the kitchen closed around him.  Jon suddenly realized that very likely this man had no place to go.

Jon launched Project Reach, a contest to encourage developers to create and app that would help the less fortunate find out in real-time which clinic could help them and which shelters had beds available.   Jon is working with HHS, HUD and the VA to make his dream a reality.

We also heard about the iBlueButton from Humetrix.  So blue button become s the center of HDI’s logo.  Here download and transmit combine as patients fly in and out of the fluid data of care.

I did slip out of my booth for a few moments Tuesday June 5 to see the breakout session "Consumer Engagement Using Health Data."  The part I was able to see was facilitated by Lygeia Ricciardi from ONC and Judy Murphy  I came to see Karen Herzog, Tiffany Peterson and Alan Greene speak as patients and caregivers on the panel.  They were all great.  Though I missed I hear they even had an exercise break mid-session.  Go patients! 

On day two, I had learned my lesson and set up my easel by the natural light streaming in from the corridor.  I heard the presentation about the Cancer Survival Query System by the National Cancer Institute.  It sounded like an amazing app that would allow doctors to have a realistic and supported conversation about cancer care options no matter the current stage of disease.  I was saddened to hear this app would not be able to be viewed by patients.  So I stand within the painting blindfold on hand reaching out to grasp an app that’s out of reach.

During my time in the exhibit hall, I listened to all the stories crashing around me.  Chiara Bell was there with a new app for Careticker called KnockedUP.  In the painting she strides up the data hill.

Jeff Donnell, President of No More Clipboards, stares defiantly at the viewer.  He dares us all to give up the vestiges of a paper medical records system and dive into the world of digital.

To the left of Jeff, Pat Remington, MD, Associate Dean for Public Health University of Wisconsin holds aloft a sign reminding us to focus the power of data on the world of public health.

All the while I painted this, every few minutes someone would stop to ask me about all the paintings walking around.  Many of these data folks seemed very confused by art at a health data conference.

I wonder if they have heard about the new aesthetic.  Can you truly understand data without artifact?  Did people in attendance really think the term “Health Data Palooza” was only a cute affection? Bill your event as an endless data party and you should expect rock stars on the stage and poets in the audience.  As I remarked to my friend e-Patient Dave, "Folks can't go around shouting 'Data Liberación!' and not expect a painter to show up :)"

The Walking Gallery is a living manifestation mobile health app.  It has viral spread and unlike many apps, continued use is quite common after initial down load.  We are rapidly reaching scale supported by social media and novel economic structures.

After seeing Gallery jackets everywhere she looked at in the Health Data exhibition hall, one woman asked me in a wary tone, “Where does all the money go?”

My flip reply was, “What money?  There is no charge to join The Walking Gallery.  This is a patient advocacy movement.  You already paid.  You pay by living your story and sharing your joy or pain.  Some folks donate to help cover shipping and supplies, but there is no charge to join the Gallery.”

We are more of an up-start than a start –up.  

If Todd were to ask me what would take Health Data Palooza to next level, I would say simply, every app on stage could use a puppeteer explaining code or a poet performing a spoken word data set.  When I look at apps I would like to see art imbedded from the beginning and not as an afterthought. I see a new aesthetic finding its way into health data. 

And of course we need a lot of patients included, in design, on the stage and in the audience.