Top 10 Reasons we need a physical home for The Walking Gallery

Update: For the past year, I have been trying to find a property that would be a good physical home for The Walking Gallery of Healthcare. There we could host art classes for all ages, artists could paint jackets, and patients from around the world could visit us in peaceful Grantsville, Maryland. The red brick house (red brick is great for mural painting) next to mine became available and I put in an offer. The contract was accepted!!!

We need to close by February 19, 2016.  Then I must begin needed repairs to the furnace and plumbing.  I hope to have the space ready to have a public dedication on Thursday, May 19, 2016 at Cinderblocks3. 

My son Isaac thinks we should call the art center Salt and Pepper Studios, since salt is used in medicine and a little pepper is what makes health activists great. 

Thank you CANCER101 and so many others for supporting this project so far! I will keep you posted as we go forward. Some folks have had a few questions about the new art center. Though I do not do list posts very often, I thought this would be the easiest way to explain why we need to create this center.  

10. People need space to create. 

I have worked with the students in every class in Grantsville Elementary School as they created art for the Grantsville Art Walk.  That is 220 some children working on art.

We had a blast painting and the children did excellent work. Then I took 9 canvases and hundreds of painted rice paper sheets home and assembled the art into ten class creations.  This year I am very thankful I was able to do the assembly in the gallery space in my house.  (We gave up having a living room to have a gallery instead.) 

The last time I assembled this many class creations, I lived in a small apartment in Washington, DC. I can tell you from experience that doing large quantities of art in small spaces is very stressful on the artist and their family.  

 

We need space to create. We need rooms that can get messy and we can just shut the door.  We need a place to put our tools.  We need to be able to share those tools, because art can get very expensive and out of the economic reach if you have to buy everything for personal use. 

9. Painting can be very lonely.

You might have seen me painting at medical conferences around the world.  I am usually set up off to the side.  During every break the wonderful attendees come over to my easel.  We talk about their personal health stories and the power of art to heal.  The most important thing is: we talk.  Some people have noticed I do not paint Walking Gallery jackets as quickly when I am at home. There is a very good reason for that. 

At home, I paint alone.  I trudge down to my basement studio and paint for hours. Some artists may like this solitude, but I do not.  If I didn’t have the ability to listen to WAMU/NPR out of Washington or WFRB broadcasting from Finzel, I am not sure could complete my work.  I look forward with glee to the point when the painting is finished and I can get on Facebook and Twitter to post the pictures and “talk” with people again! Then I look over at the next jacket.  I pin it to its painting form.  I begin the process of priming it and painting alone.  

When my loving husband Fred was dying he worried.  He told me, “Reggie, you are going to be alone.  We both know you are not good at being alone.”  He is right.  Fred and I met 22 years ago in a painting class.  We were both sad and lost and we found each other.  We were never alone surrounded by stories, paint and each other.  Now he is gone and our sons remain.  Each day I work very hard at painting our family ever larger.  That family is The Walking Gallery and that family needs a home.

We need a place that artists from all over America can come and paint together.  A place where we can support and inspire each other.  If we want this movement to grow from hundreds to thousands of jackets, we need a place where we can paint and grow this movement. 

8. Children need to see the arts as highly valued in our society. 

The children are watching.  They are amazing information sponges.  They see that in school they have math and reading everyday but may only get art once a week.  Or perhaps they must choose.  They can take an art class or a music class or band, but not all three.  They can see that a town or a county will spend thousands on a soccer field, tennis courts and baseball diamonds, but not invest in outdoor easels and public art.

I know that art is the driving force that helped me through a very hard childhood.  I know having the opportunity to draw a picture and act in a play made all the difference in my life.  I know that I attended school and stayed in school because I loved my art class and my debate class.  We need places like this art center, shining like a beacon of hope and creativity because people will see it and the children are watching.

7. We need a culture of healing in healthcare and not just a sickness model.

When I begin to explain what I do, people often interrupt with the question, “So are you an art therapist?”  I explain no.  Art therapy is great and art has so much power to heal.  But I use art in a way that goes beyond the therapeutic goal. I use art to share stories. I use art to create public policies that are patient centric and I focus my art on the world of healthcare. 

Right now there are many activists and advocates like myself focused on flipping the sickness model of care into a new culture of healing.  We talk with hospital executives and hear their concerns about a future of empty beds and lost revenue.  We counter with a different vision.  What if the hospital of tomorrow is an art-filled community hub, a fitness center and a play area for children, as well as a place that can provide needed emergent care?  Some CEOs scoff at this vision of tomorrow, but it is already happening throughout the country.  For example look to Eskenazi Health, a public city hospital, in Indianapolis; they have a public garden, a water feature to play in and dozens of commissioned pieces of art throughout the grounds of their facility.   Just read the words of CEO Lisa E. Harris, MD:

    

“Medical, psychological and neurological research have focused attention on understanding the full scope of the healing properties of art, and the positive correlation is clear and compelling,” said Dr. Lisa E. Harris, chief executive officer of Eskenazi Health. “The new Sidney & Lois Eskenazi Hospital and Eskenazi Health campus feature art and garden spaces like Arbor intended to enrich the lives of patients, visitors, staff and the community.”

So this really edgy concept of hospitals embracing the arts is becoming mainstream.  Now let’s do something really innovative; let’s build an art center that embraces medicine.

6. Communities need a place to congregate that is not centered on eating.

For many years my family lived in a small apartment and it would often get very claustrophobic.  On nice days we could go to the park, but in winter the options were few and far between.  We could go to stores and spend money that we could scarce afford or we could go out to eat.  The problem with frequently going out to eat is that the caloric load is very high, especially in the types of food establishments a poor family can afford.  As a person who is very plump, I try to find public events and venues that allow congregation, but are not centered on food.

Art classes, health workshops and family game nights are all wonderful ways to utilize our future center without adding to the national obesity crisis. 

5. We can do great things by crowdfunding in healthcare. 

I go into way too many meetings where people tell me the good ideas they envision to help others cannot be realized.   They do not have the funding.  I reply, have you tried crowdfunding?  At this point with the help of the crowd, we have created patient travel scholarships, a video on how to join the Walking Gallery and help pay for our first Partnership with Patients conference: #Cinderblocks.

This project is part of a current crowdfund campaign on gofundme: The Walking Gallery   We already have raised money towards the down payment on this building on Medstartr and now are gathering the funds to make needed repairs after closing, insurance for the building and any offsite events, and this fund helps pay for the paint and shipping cost associated with the Walking Gallery.

4. Creative Placemaking is really happening, check it out! 

Around the nation a movement is building called Creative Placemaking:

In creative placemaking, public, private, not-for-profit, and community sectors partner to strategically shape the physical and social character of a neighborhood, town, tribe, city, or region around arts and cultural activities”

In September 2014, I was able to attend a Creative Placemaking Summit in Cumberland, Maryland hosted by the Allegany Arts Council. Across the nation hacker spaces, maker spaces and art bars are cropping up.  In Garret County we already have a business incubator hub in McHenry and a maker space in Accident.  It just makes economic and geographic sense to have an Arts Center in Grantsville.

In July 2015, Grantsville became the site of the first Arts and Entertainment District in Garrett County.  My work with the students of the local school, hosting #Cinderblocks2 here and creating pieces of neighborhood art, helped ensure this designation. 

3. You can’t build an international movement without wifi.

If you are familiar with Grantsville, you will know it is very accessible.  Our town is right off Interstate 68 and is intersected by the National Pike/Route 40. The community is bookended by Route 669 and Route 219 and bisected by Route 495

The town is also wired for high-speed internet through Comcast cables.  Now for many of my readers who live in big cities that may not seem very important, but in this mostly rural area it is a very big deal indeed.  Many of our geographically close neighbors have to deal with the frequent outages of satellite internet.  We can provide the community a space that is so very needed in this day and age. 

This space can also be the command center as we plan #Cinderblocks3The Partnership with Patients Continues. (You can register here!)  #Cinderblocks3 will bring 170 people to Grantsville in late May of 2016. We hope to make it an annual tradition, a sort of Burning Man meets Healthcare. 

2. Some of us need a safe place to go. 

For many years I suffered abuse as a child.  I would not often talk about it, but I wrote about it and I drew about it. I hoped my teachers would act, but they never did in an obvious way.  That was another time and another place.  Today we are supposed help those who are in abusive situations.  Sometimes you can even prevent some abuse through better use of space and free time.  It is very hard for a family to be stuck in a small space in a long winter.  It helps if there is a safe place that you can go and play.

In addition, throughout this past year many patients and artists have reached me. They have asked for help.  They need a place to stay; they need a place to heal.  They need the mentorship of a strong advocate and the embrace of a loving community. That place can be this center.

1.  I am rooted here.

I have lived in so many places in my long and winding life.  We always rented; we always moved.  The Uhaul truck became a familiar friend.  In 2009, my husband Fred died and was buried here in Grantsville. Our children place toys upon his grave.  He lies two blocks from our home, three blocks from our Church and four blocks from his parent’s house.  He walks with us in spirit. 

People ask me, “Why  create a home for the Walking Gallery in Grantsville, Maryland?" I say because this place is quiet, kind and peaceful.  This town can help others as visitors can help Grantsville continue to thrive. But most of all because I founded The Walking Gallery of Healthcare.  The Gallery must grow, must walk; but I am its roots, and I am rooted here.

Thank you all and God bless.

Patients as Brand, Advocates

I love earPlanes.

Do you know what I am talking about?  earPlanes are these little earplugs that were created by Cirrus Healthcare products to reduce ear pain when flying.  The device consists of a silicone earplug and a ceramic pressure regulator.  As a frequent flyer, I use them on every flight. They cost $8.00 a pair and are worth every penny.

Before I found out about these nifty little things, I was suffering frequent ear infections post flight and could not hear very well due to ears that would not “pop” for days.  This was quite a problem.  It is hard to speak well if you cannot hear well.  Also as a person with high co-pays and no prescription coverage treating the subsequent ear infections was getting to be quite expensive.

I posted my problem on Facebook and one of my friends alerted me to the wonder that is earPlanes.  I admit I was somewhat disappointed that my doctor never suggested such an affordable preventive option.  (By that point I already spent over 500 dollars on my air flight-induced ear infections.)  Perhaps she did not know about this option, so I am blogging about it in the hope that fellow travelers can have a less painful journey.

If you read the above paragraphs you might realize why I am writing about Earplanes is not to help Cirrus Healthcare Products.  I want to help my friends and fellow travelers.  You might also realize there were two brands enclosed in the above testiomony: Earplanes/Cirrus Healthcare Products and Regina Holliday.

This post on the meaning of branding was inspired by a cold call request made by Andrew  from PM360 Magazine.

“I am with PM360 Magazine, a monthly publication for pharma marketers. We also send out a monthly e-newsletter called Panorama. Every month in the newsletter we ask our readers a questions about a new topic, and then we publish the responses we receive in an article in the next month's edition. I thought that this topic might interest you as a patient advocate.

Trend Talk: Patients as Brand Advocates?

Social media has created a web of readily available brand advocates. For the most part, these are just regular people who are talking about the stuff they like and in doing so are influencing their social circle to also purchase that product. Now, new companies are emerging that are attempting to measure a person’s influence on social media. These companies, such as Klout and PeerIndex, do not only analyze a person’s influence and give them a score, but they work with brands to help them promote their products. For instance, high influencers can be given a discount on a new product or just given a sample to try out. Then it is up to them if they want to tweet or post about it—obviously the brand hopes they like it enough to recommend it. While this model may work for consumer packaged goods companies, is there any way pharma could take advantage of this kind of data and do something similar? What is the best way that pharma marketers can work with patients to improve their campaigns? What are some of the most unique or interesting ways that you have seen pharma companies work with patients to help get their message out there? Email your responses… by May 14.

For the most part, we are only looking for a few sentences from each contributor. I thought you may want to contribute something from the patient's point of view. Let me know if you have anything to say on this topic and are interested in responding.

Thanks,

Andrew”

This request bothered me in its tone and scope, so I thought I would respond online and invite all my patient advocate friends to respond as well…

Do social media much?  The tone of this request is very off if you follow the ins and outs of social media.  Klout and PeerIndex were launched almost 4 years ago and that is rather ancient on the internet.  Also, I have never seen anyone in my social network utilize Klout  “perks:” the commercial tie-ins to brands.  I checked out PM360’s internet presence and it is a little sparse for a marketing magazine.  They have 134 connections on LinkedIn, 65 page likes on Facebook and on Twitter they have 1,553 followers.  I think some of the questionable tone of this request is due to inexperience in Social Media and too much exposure to the traditional group-think in marketing.

“While this model may work for consumer packaged goods companies, is there any way pharma could take advantage of this kind of data and do something similar?”

A word of advice: Don’t ever ask a patient activist how you can take advantage in the realm of patients…

“What is the best way that pharma marketers can work with patients to improve their campaigns?”

 Most patients in the social media space were just regular people who began to speak out.  In many cases they did that out of pain.  Just as a cattle’s brand is seared upon his flesh, the patient’s brand is seared upon their soul.  The patient may brand themselves with their formal name: Regina Holliday, a modification of said name: e-PatientDave, a created name: Afternoon Napper or the name of the organization they have created: Colontown.  They complete this painful process to spread their message be it focused on patient data access, patient empowerment or disease specific research and funding.

So the primary brand in such discussions is the brand of self and those in marketing are interested in tagging along for the ride.  Well, before you join my crazy life ride; I need to know something about you.  I may sing the praises of earPlanes without ever meeting anyone from Cirrus Healthcare (10 followers on Twitter) based on satisfaction of the product.  But I bet I would be even more appreciative if I was able to engage in active discussion with Cirrus staff who shared on Twitter.  We like to thank folks personally for the good work they have done.  When we work on campaigns in social media we expect the support to be like a friendship: it goes both ways.

“What are some of the most unique or interesting ways that you have seen pharma companies work with patients to help get their message out there?”

If you want to see a good example of pharma social media look at Lilly Clinical Open Innovation or @Lilly_COI on twitter.  They talk with us.  They attend our tweetchats. They even wished me Happy Birthday through a retweet last week.  @Lilly_COI may not have a ton of followers, but they understand social media is not about using patients.  Social media is about working with people. 

The folks @Lilly_COI have done a great job at helping patients get the patient message out.  They attended and helped sponsor The Partnership With Patients Summit in Kansas City last fall and even hosted an unconference session on clinical trials and patient experience.  They actively retweeted what patients had to say and helped the conference hashtag trend on Twitter.   That is what you meant by “to help get their message out there?” Correct, Andrew?  You wanted to know how pharma could help get the patient's message out? 

Well, those are my thoughts, but I would love for folks to respond to Andrew in the comments section of this blog or on the PM360 twitter account. 

*********************************************************************************
Update: Andrew wrote this response piece: Learning a Lesson from Patient Advocates

Thank you Andrew for joining the conversation!

Rally with Us in Support of Patient Data Access May 6th!

The AHA (American Hospital Association) is hosting their annual meeting on Sunday, May 6^th at The Washington Hilton 1919 Connecticut Ave.  Washington, DC.

They will meet right down the street from where I live, where my children live and where my husband died.  They will meet at a hotel that is on the same street as the mural 73 Cents.  That painting is a testament to the need for data access and I painted it in the 3 months immediately following my husband’s death.

The AHA meeting will take place mere feet away from the offices of the National Partnership for Women and Families.   On Wednesday, Christine Bechtel Vice President of @NPWF wrote a post entitled, “Don’t let them destroy patient protections in health IT!”  Her post objected to the hostile stance of the AHA towards patients’ data access. 

The AHA would like patients to wait 30 days to see their medical records after an episode of care.  This stance is in direct opposition to the hard work of many doctors, patients and members of the Department of Health and Human Services.

I humbly invite all of you to meet me on the sidewalks surrounding The Washington Hilton on Sunday May 6^{th .}   We will gather from 2-6 in the afternoon.  Wear your Walking Gallery jackets and be prepared to wave them or to wear them.  Make signs supporting patient access to the medical record or use the ones I make with the help of children and friends.  Come in your Sunday best or your weekend casual wear.  Bring your entire family.  Let your children join my little Isaac in his joyous shout, “Healthcare! Healthcare!”

I will bring bubbles and we shall walk and blow them in the air.  Let us be joyous and each bubble will represent the over-blown egos of association that would dare to deny us access to our own information.

For a moment in time those bubbles will glisten with beauty and appear to be a seamless whole entity… and then shall pop.

Be brave for I know many of you work in healthcare and taking on the AHA can be scary.  But take inspiration from the statue in front of this grand hotel.  It is a statue of General George B. McClellan.  My wonderful husband Fred, who was a civil war buff, detested McClellan.  McClellan constantly over estimated the strength of the opposing army and his tactics were unsuited for the battlefield.  He almost lost the war for the Union.  He was a bureaucratic leader not the man for timely decisions about life and death.

It seems that statue is a fitting symbol for the AHA stance today.

The Patient Panel

For many years patient advocates have worked on greater presence of the patient view in medical conferences both as presenters and attendees.  Some of us have pushed even further and asked to be part of the planning stage and design of events or care systems.  Many of us have fought for years for mere inclusion. 

But the time has come for more than just inclusion.  I have attended far too many events that take a step toward including patients where they give us a panel at some odd point in the day or in a basement side hall.  I have watched rooms, once filled while the provider panel spoke, empty out as the patient panel begins its presentation.  The conference attendees congregate in the hallway drinking coffee and networking while patients speak to half-empty rooms.

Patients’ panels are not just an extra coffee break.

There are people and organizations out there fighting hard for patient inclusion.  One of these organizations is TMIT (Texas Medical Institute of Technology).  They have been working for more than a year on a healthcare documentary for the Discovery Channel called Surfingthe Healthcare Tsunami: Bring Your Best Board!™  They will premiere that documentary on Friday, April 27^th, in Washington, DC.  The documentary will be shown at a private screening at The National Press Club from 8:00am -10:00am that morning.  Then it will be shown that evening from 6:30-8:00pm as a public premiere with attendees who were in the movie, collaborators with TMIT, and limited general admission.

The film will introduce and close a day devoted to the positive role HIT can play in medicine and patient communication.  There will be a patient panel, and it will be integral to the flow of the meeting.  The entire Patient Safety and High Performance Leadership in Health Information Technology Summit will be live-streamed and the twitter handle is #HITTMIT.

Please save the date. If I do not see you there in person, I look forward to reading your tweets.