Stories From The Walking Gallery: Keith Boone

Part 3 in the Walking Gallery series. See Part 1, Part 2.

Regina Holliday, founder of the The Walking Gallery, began the social movement because of something personal—her husband Fred Holliday’s death from metastatic kidney cancer. Even before Fred’s diagnosis, the Hollidays struggled to get an accurate explanation for Fred’s chest pain, time to ask questions of his oncologist and access to Fred’s electronic health information.

Regina did not want others to have the same experience so she began painting medical advocacy murals. One of those murals “73 Cents” in Washington, DC, was rededicated this past weekend.

Having a personal investment in a cause isn’t always enough to get it off the ground, but Regina has managed to do that. She has gotten 230 people to share their personal stories and have those stories painted on the backs of suit jackets in mural form. Gallery participants wear their jackets at meetings to help open a dialogue about the importance of Health IT and data access.

It’s not always easy to wear a jacket and commit to being the center of attention at a meeting, Regina says.

“It’s sad and it hurts,” she says of sharing a personal story, “and you connect with that inside of you.”

But as she points out making things personal can help spur activism, “You can always take a stance on your own life.”

Phoenix Rises

Keith Boone usually introduces himself as a Standards Geek for GE Healthcare. He represents GE to a half dozen standards developing organizations and similar bodies, creates Health IT standards and promotes their use. He also spends time understanding, reviewing and commenting on various U.S. regulations around Health IT standards.

Keith_regina11. How did you meet Regina and how did you learn about her projects?

I first “met” Regina virtually, when she was featured during the Health and Human Services press conference announcing meaningful use proposed regulations. Remember how I said I reviewed regulations? Well, MU is right down my alley.

Regina had me in tears (and it wouldn’t be the last time she did that to me). Having heard her speak, it was then absolutely necessary to find her art and her blog, and add her blog to my RSS feed. I learned about the Walking Gallery because I read anything she posted.

3. Did you have any thought or opinions about the Walking Gallery project before you took part in it? Were your opinions right or did you change them?

My first opinion was that I loved Regina’s art, but would never be worthy enough to wear it. Oh, was I so wrong about that.

4. Why did you decide to become involved in the Walking Gallery?

Regina asked me to get involved over Twitter. This story is pretty good. The setting is an HL7 Working Group Meeting in Lake Buena Vista, Fla., in May, during one of my breaks. I’m sitting outside in the sun, participating on a tweet chat started by @ONC_HealthIT and hosted by @BangorBeacon.

At one point, I referenced a script I wrote for a commercial titled “It’s Your Data, Ask For It” in the chat. Erika Olenski (@TheGr8Chalupa) of #HITsm fame tweeted back, “We need to connect up Keith’s stories with Regina Holliday’s art.” Within five minutes, Regina had asked me over Twitter if I want to come to the first Walking Gallery event. Want to come to DC, walk and wear a jacket painted by Regina? I had the ticket to DC purchased within 5 minutes.

Keith_regina25. What is the painting on the back of your jacket and what does it symbolize?

The painting on the back of my jacket is called Phoenix Rises. It explains why I and so many others that I know work until wee hours of the morning crafting health IT standards. We are all paid professionals, but nobody ever pays you enough to go without sleep for several days on end to produce these standards. We are dedicated because of the stories we all have about what needs to be fixed in healthcare IT.

6. What was the most difficult thing about telling your story to someone and have them put those words into pictures?

Shutting up. There are at least 7 different stories on the back of my jacket, and I have many more.

7. What have you been most surprised about regarding the Walking Gallery?

My own daughter’s enthusiasm for Regina’s art and mission, and her development of her own mission, which is to get kids her age educated about the healthcare system. She’s also a member of the gallery, wearing Epic Win, which is described in this post.

8. How have people at meetings or other places you wear your jacket responded? Do they ask many questions about it? Does it open a dialogue?

The most common question I get is “Did you paint that yourself?” It’s usually asked after complimenting me on the artwork. It depends on the venue whether people ask me about it or not. My favorite places to get stopped are walking through the city or on the T or metro line, or on the plane, where I’m not in a healthcare related setting. Yes, it does open a dialog, and an interesting one at that. I still have to work on my elevator pitch to go with the jacket, because my stories are always too long. But people listen to them.

9. What results do you hope will come out of the Walking Gallery?

The easy answer is awareness and change and it already has. On a flight to DC more than a year ago, someone on the plane asked me: “Is that a Regina Holliday jacket?” When I get that kind of question, I know that awareness is spreading.

What I hope for is more of the same. I’m headed off this weekend to the Third Annual DC gathering of the Walking Gallery. Last year I brought my daughter and she joined the gallery, but this year there’s just too much going on. She’ll be with me in spirit as I walk.

Part 1. Brick Walls Are No Match For Regina Holliday’s Medical Advocacy
Part 2. Becoming Somebody: Regina Holliday Doesn’t Give Up When it Comes to Speaking Up For Patients


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Jennifer Thew, RN, MSJ

Jennifer Thew, RN, MSJ, is a registered nurse and journalist who has covered healthcare issues and how they relate to the nursing profession. She began her nursing career as a neuroscience nurse at Rush University Medical Center in Chicago and then transitioned to journalism after receiving a degree from Roosevelt University in Chicago. She has edited and written numerous articles on a wide range of nursing and healthcare topics like Accountable Care Organizations, evidence-based practice and telehealth.

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