Regina Holliday, Patient Advocate Extraordinaire, #Cinderblocks4

May 24, 2017

GRANSTVILLE, MD – The saying goes, if you want to get something done, ask a busy person. In Grantsville, Maryland, that’s Regina Holliday. Grantsville is a rural, one-road town, population 766, nestled in gorgeous mountains. It’s where Regina’s late husband was born and raised and where she chose to relocate with her two sons after he died in 2009 from kidney cancer.

Take a walk with Regina down Main Street, and you’ll find that she knows everyone. Each Sunday, she delivers a home cooked meal to her elderly neighbors, a husband and wife – she’s got multiple sclerosis, his eyes are bad. Regina’s a member of the Granstville Rotary Club, she’s on the board of the local non-profit, Highland Thrift Shop, she’s the Assistant Cubmaster of her son’s Cub Scout troupe, and she was instrumental in getting a section of Granstville designated as an arts district.

Regina is all about community and creating opportunities for change for the greater good. She’s a fierce patient rights advocate, an OpenNotes evangelist, and a painter, best known for her Walking Gallery. Over the past six years, she has listened to countless patient stories and painted more than 400 of them onto the backs of a suit jackets, which she then gives back to the patients to wear out into the world, becoming members of the Walking Gallery. The paintings are also represented in a Lego characters exhibit displayed at her Salt & Pepper Gallery.

“The origin came from the most universal symbol that you are a patient, the open johnny gown. Everybody knows the minute they see somebody from behind, that’s a patient. And it’s incredibly disempowering,” says Holliday. “So why don’t we claim the back. Take back the back, right? So we take a business suit, which is a symbol of power, and we smack the patient story on that, therefore empowering the patient.”

Each year Regina convenes members of the Walking Gallery and others to join her in Granstville for a patient-led gathering: #Cinderblocks. It’s not your typical medical conference. Yes, you’ll hear from data nerds, health experts, and academics, but you’ll also be invited to sing and paint, and of course, go for a walk.

“It’s like family. It’s like Thanksgiving without the drama,” says Joshua Rubin, JD, MBA, MPH, MPP, from the Department of Learning Health Sciences at the University of Michigan Medical School. “It’s a place to get re-motivated.”

The conference involves a small group of passionate people, each with a big idea. This year’s presenters include among others, Melanie Peron, from L’Effet Papillon, a French company that’s developed a simple virtual reality technology called Bliss being studied as a method to replace or reduce pain medications for some medical procedures. Locals, Shelley Argabrite and John Corbin from the Garrett County Health Department were there to speak about a digital community engagement collaborative developed for GarrettPlan.org. And Heather Hanline, Executive Director of the Dove Center, presented about the correlation between health disparities and trauma and sexual violence.

“The impetus for change comes out of being able to sit together and have the opportunity to expand on a topic,” Carly Medosch, a member of the Walking Gallery and a program analyst for the Centers for Medicare and Medicaid Services.

“These are true believers that health care can be much better than it is right now,” adds Regina.

In typical fashion, by day three of the conference, she’s already thinking about what’s next. In a talk back session, she asks participants what they’d like to see next year. Overwhelmingly, they want to see is a bigger audience (though not too big) and they want attendees to include doctors, nurses, therapists, administrators, anyone who can help carry the patient-centered mission forward, while enjoying some down time among some very cool people.

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