#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.  

Power Suit

The other night at dinner my youngest son Isaac said from the depths of his seven year old wisdom, “A human is the only animal that wears clothes.”  He then went back to chewing his food as I nodded in agreement.  Clothes and the adornments we place upon them say so much about the person.  They can place a person on an economic scale and give a sense of belonging.  Clothes can mark us as different and rebellious.  If an outfit is strong and becoming it may be called a “Power Suit,” as though the clothes can make the man.

I think its works the other way within The Walking Gallery.  Recently I painted a jacket story for Ian Eslick.  Ian plans to wear that jacket for his dissertation defense at MIT.  Ian is really smart, as in getting a doctorate from MIT smart; but Ian does not flaunt his mental abilities.  He speaks from a patient view as he talks of data aggregation and the possibilities if we harness the power in patient reporting within scientific research.

The painting for Ian is entitled: “The Highest Double.”

In this painting, I placed Ian, his mother-in-law and his two twin daughters.  They are playing a game of Mexican Train.  Have you played Mexican Train?  I love it.  I love it because it looks so hard at first but it is so easy.  Someone had the brilliant idea to color code the dominoes.  Each color is also a number, so seniors, children and parents can all play.  I learned to play this game with my in-laws.  I told my boss at the toy store we should carry it.  He brought it in reluctantly.  He said it wasn’t a very hard game, why would anyone want to play it?  I told my boss it had some good addition drill and it was fun, but most important of all anyone could play.  So if you look closely at these dominoes you will see they begin to morph from regular dominoes into patient reported diagrams.  How can a chronic condition be affected if we remove one agent of causation and compare outcomes?  What if we start comparing patient populations and look for doubles?  Look for patterns? Think of that train of knowledge. 

You see Ian is looking for that highest double.  He is looking at entire patient populations just as you or I would look upon a pile of dominoes.  He is looking for the match, the pattern, the train.

You might notice coins are laid upon this table (you also might notice they equal 73 cents).  My family uses coins as markers when we play Mexican Train.  If a coin is placed upon my domino track, I am unable to play on it and it becomes a train held in common.  Anyone can play on it.  In the game upon this table all trains are private.  Ian has a train and his two daughters have trains.  That final train with its foreshortened perspective facing the viewer; whose train is that?  It is yours.  It belongs to all of you who look upon Ian’s jacket.  You are welcome to join this game of data. 

Ian wants you to play.  

My Baby

I love to paint and I love the paintings I create.  Like many an artist, I can be very protective of my work.  Artists can show this love and protection in many ways.  Some artists want to sue the folks who use an artist’s work without permission.  Some artists are very picky about who can buy their art.  You see, in a way, these are our babies and we want them in good homes.  Recently, I was afforded an opportunity to paint at a medical conference and the painting that came from that meeting could be called a “favorite child.”

Several weeks ago a few friends in my circle of advocates pointed out that there was a conference coming up in DC called Engage:Unlocking Patient Engagement Through Innovation hosted by MedCityNews.  These friends were quite disturbed that there appeared to be no patients involved in a patient engagement conference.  Sarah Kucharski (or @afternoonnapper on twitter) was one of those concerned advocates.  She contacted Veronica Combs from MedCity News and expressed her frustration.  Veronica looked into Sarah’s patient advocacy.  She discovered Sarah is a leader in this arena and then Veronica asked Sarah to be part of a panel.  

Another health policy friend asked me if I would attend and I said, “Sure! As long as they are okay with me painting onsite.”  He went to verify with the venue that painting would be okay.  He was told no.  So I would not be attending Engage.  I love painting at events; I understand the content at a much deeper level when I paint. But more importantly, I feel that if a venue is unwilling to accept the “messiness of art;” they are also unable to accept the messiness of patients. 

On Tuesday I was walking in the hallway at Health DataPalooza when Veronica Combs approached me asking if I were going to attend Engage.  I told her no because of their stance on my painting.  I followed up by telling her I had considered protest painting in front of the conference hotel to make a point.  Then Veronica did a brave thing.  She did not laugh off my response or grow offended.  She listened to me and started making calls.  That evening I got an email from Chris Seper who was running the event.  He explained at the time of my request there were putting out a lot of fires, hence the “no” answer and admitted the idea of me painting out front was sort of exciting. But would cherish my work more if I came in and attended the event.  

So I attended on June 5-6 and painted “My Baby.”  I was also excited to see so many of The Walking Gallery members and amazing patient rights advocates like Gregg Masters, Pat Salber, Mary Anne Sterling, Alisa Hughley,  Karen Herzog, Sherry Reynolds, Victor Montori and Matthew Holt at the event.

The first thing I painted was the swirling funnel of energy I felt within this space.  The air crackled with a multitude of attitudes about patient engagement.  The swirl quickly became a man and a woman embracing within the maelstrom.  Their arms formed a ring.  When attendees questioned the symbolism I reminded them that in the world beyond the medical conference “Engagement” means a very different thing.  It is a time to rejoice and send congratulations to the happy couple.

I painted swirling litter in the funnel.  This alluded to two things: one was the conference hashtag on twitter which quite a few folks thought a snarky reference on a McDonald’s type of engagement, secondly in honor of Wil Yu’s framing speech.  He reminded us of the 50 year campaign to reduce littering and the struggle to create culture shift.  He used a Mad Men clip to remind us how common it was once to just throw trash on the ground.  Through twitter Leonard Kish asked the crowd:

Then I began to paint the skyline of Enid, Oklahoma.  This is the town where I was born and spent the summers of my youth.  Recently, Oklahoma has been buffeted by a series of tornados.  Listening to NPR, I heard several folks commenting that residents should just move to another state.  Those statements reminded me of the often-paternalistic attitude toward patients who are non-compliant.  Leave the land that a family has lived on for generations?  I think not.

The skyline of Enid has some rather famous grain elevators.  These silos seem like skyscrapers on the prairie.  Located side by side, I modified one into a pillbox with the Sunday slot open.   The tornado funnel of patient engagement approaches these silos preparing to disrupt.  Right about then Will Yu was taking questions so I jumped up and grabbed the microphone to ask, “What are you doing to include artists and poets and musicians in culture change?”  He spoke about all the work the federal government did to encourage video challenges when he was with the ONC(Office of the National Coordinator for Health Information Technology).  But I think Will forgot he no longer works there.  What is Wil Yu, the amazing brilliant one person working for the betterment of patients everywhere, doing right now to encourage culture shift through the arts?  To create culture change we must all take part: this is not the Beetles; this is Beetlemania.

The next day I began to paint the houses of MedCity with their pill capsule windows while Congressman Mike Honda addressed the room and spoke of innovation.  Then Ramin Bastani founder of Qpid.me treated us to a surprise presentation.  I have had the pleasure of painting about Ramin’s work two times before at Health 2.0.  He is a wonderful change agent with an iPhone app that shows STD status.  He has spent the last three years studying patient data access law in all 50 states and is now an expert on the topic.  I watched this funny good-natured guy blossom into a force to be reckoned with.  He might be wearing Hawaiian leis, but there is a steely determination under the apparent joke.  So I painted his Qpid.me heart upon the Church door as I pondered the Freudian and somewhat prophylactic symbolism in the shape of a gothic arch Church window.  When Ramin looked at my third attempt at painting his work he smiled as I told him, “Christ was into disruption.”

We were also blessed to hear from Peter Levin, who had worked at the VA on Blue Button, (download and transmit patient data) and Lygeia Ricciardi, Director of the Office of Consumer e-Health, ONC.  As they spoke I painted a faint Blue Button symbol into the funnel.  During lunch I had a chance to speak with John Moore III whao is CEO and Founder of RxApps and we spoke about the importance of the community pharmacist. So I added a mortar and pestle to the painting.

While this painting worked toward its resolution, a very special panel began: “What Do We Want as Patients, Consumers and Caregivers?”  The moderator was Veronica Combs, Editor and Chief of MedCity News, the ever-irrepressible Suzanne Mintz, Co-Founder and CEO Emeritus, Caregiver Action Network, Adrienne Boissy, MD,  Medical Director at Cleveland Clinic Center for Excellence, Sarah E. Kucharski, CEO/Chairman and Founder of FMD Chat and Roys Laux, General Manager Health Vertical, Angie’s List.  As these women spoke, I returned to the funnel design of the painting.   Dr. Boissy spoke of a client who she believed to be drug seeking.  As she tried took a history the patient tried to describe her clinical journey.  Dr. Boissy redirected the patient to focus on root problems.  Then the patient explained her family did not believe her symptoms were real which was causing a great deal of stress.  The patient, who was a pharmacy tech, said she was worried that she either had MS or parasites.  The doctor then followed up with the question “Is there a history of abuse?”  Now for those of use immersed in the world of medicine we are used to this phrase and know it is a code for drug abuse.  This patient did not know that so she paused and answered: “Yes, I was raped as a child.”  This answer led to Dr. Boissy learning that this patient was also a “cutter” who self-harmed to deal with all she had been through.

So now I knew why the clouds in my painting had the patina of an old bruise. As the stillness that emanated from this story filled the room Veronica Combs shared that she had a miscarriage and spoke about the shock of being told that news, but quickly apologized for sharing too much information.

As my eyes grew hazy from a film of tears and I looked at the faint symbol of Blue Button in the painting, it looked more like the image of an ultrasound than a healthcare symbol.  I cried for Veronica who lost her baby in the messiness that is life.

At the close of this event I gave this painting to Veronica, I gave my art, my creation, my baby to the woman who made true patient engagement possible this day.   Thank you Veronica.

The Island of New Jersey: HIMSS day 2

I rose early on February 23^rd and weighed down with luggage and painting gear trudged through the hotel lobbies and casino floor to the room in which I would be presenting my speech at HIMSS.  As I walked along, I noticed that the man in front of me had the tailor’s tacking stitches still in place on his suit.  I mentioned it to him and he thanked me profusely as he wanted to make a good impression that day.  Not long after, a woman mentioned to me that my large backpack was causing my skirt to rise in the back.  I readjusted skirt and bags and thanked her.  My son would say that’s karma.  I would say it is taking care of one another.

I was so excited to see many members of the gallery filing in to attend my session and was uplifted by their well wishes

As I arrived in my presentation room, I said hi to David Collins from HIMSS.  Then immediately began setting up my easel to paint that day.  I was the first Keynote in the session called Leading From the Future. Fellow Walking Gallery member Donna Scott introduced me.

Dr. to Dr.

View more presentations from Regina Holliday

I presented my speech combining together our personal patient story with the world of HIT using icons of pop-culture and images of art. 

The next keynote was Regina Benjamin, and I painted her Journey to Joy.

Soon there was a break for lunch, which I enjoyed in the company of Mary Ann Sterling.  Then I ran over to the room where Todd Park was supposed to speak, as I wanted to hand him his gallery jacket. 



When I arrived I saw Wil Yu from ONC speaking with HIMSS Staff and I asked if I could hand Todd his jacket backstage. 

They thought it would be even better if I handed it to him onstage.  So I surprised Todd with his jacket right before he began his speech.  It was a beautiful moment.  Then I went back to paint the next panel at in the Leading From the Future venue.

I began the painting “The Island of New Jersey” based on the presentation "Creating a Framework for Patient-Centered Health Information Exchange."  Linda Reed, RN, MBA, FCHIME, Vice President/CIO, Atlantic Health System, Robert Irwin, CIO, Robert Wood Johnson University Hospital and Lou Hermans, VP & CIO, JFK Health System delivered this presentation.  

I listened to member after member stress the name New Jersey far more than the concept of HIE (Health Information Exchanges) and so I began to paint a lonely island.  The focus of the speech was supposed to be: “The exchange of health information is important to our healthcare system, but more important still is helping patients become engaged, active participants in their care. As organizations exchange information, how can they ensure that the patient remains at the center of the HIE?“

Well, that was supposed to be the focus…

I began by painting a patient in the center of the island.  He looks slightly worried and is holding a puzzle piece.  He is the missing piece of the puzzle of HIE.  The panel spoke of the importance of e- prescribing, and coordination of the care team and so I began painting pills and doctors.  Then they spoke about the importance of some kind of patient portal and I painted a laptop computer, the blue button symbol and a scrolling patient story.  One member stated that patients could provide another set of eyes if we just let them see the medical record.  I painted a set of eyes to represent this concept.

Soon Q & A began and things got really interesting. 

Ileana Balcu or @yogileanna asked questions from the audience about the poor communication of the current system.  The panel answered broadly suggesting portal solutions for facilities in general.  Ileana then made it very clear that she was a patient in New Jersey using their system and it did not work well. 

The conversation devolved into a conversation about legal ramifications of data sharing and a lawyer entered the picture.

Then a member of the panel uttered the phrase I absolutely detest: “Patients need more skin in the game.”  So I wrote that phrase upon the Island of New Jersey.  Then I painted skin.  I painted skin around the eyes above and surrounding the blue button.  Now it seemed as though the blue button was less of a portal, than it was a ball gag wedged between the lips of a patient.  It is not enough to pour data into us; we must be able to respond back. 

An HIE must function as an exchange between provider-to-provider and patient to provider.  The data waves pound upon the Island of New Jersey and surround it.  How will it communicate with the outside world filled with patients?

Next Mark Scrimshire, co-founder HealthCamp Foundation spoke about the intersection of social media and patient engagement.

Empowering Health Care Engagement

View more presentations from Mark Scrimshire

He described a new concept called AEIOU a recipe for engagement.  Actionable, Easy, Immediate, Open and Unobtrusive. So in the painting I created #HIMSS12, a ship of social media propelled by the twin sails of facebook and twitter.  Upon the ship a patient reaches out to the island of New Jersey and tries to communicate.  The ship is embraced by the data waves. 

Finally Rick Skinner, VP/CIO of Cancer Care Ontario, Cancer Care Ontario finished the day by telling us about healthcare providers who are engaging their patients through social media and other strategies.  Then the attendees filed out of the room.  I spent the next hour finishing the paintings as the tech team worked around me on the next day’s presentations and the custodial staff threw away the detritus of a conference.  Around 6:30pm I cleaned my brushes and said good-bye to the nice fellows running the sound system.  I was alone with my luggage preparing to spend an evening in the airport before my red-eye back to DC.

Then Antonio Fernandez from the Puerto Rico REC called me.  He asked if I would join the Puerto Rico team for dinner. I said yes and we had a lovely evening talking about what health is all about: friendship and community.