Regina Holliday is an artist, patient rights advocate, and founder of the Walking Gallery and the Medical Advocacy Mural Project. We recently spoke with her to discuss her work, her new book, and what she’s got planned for the future – here’s what she had to say!
Q: What inspired you to become a patient rights advocate?
A: I was a regular person. I worked at a toy store and taught pre-k art. I had a wonderful husband named Fred Holliday and two great sons. Then in 2009, Fred was hospitalized with a cancer diagnosis. He was continuously hospitalized in five facilities with poor access to information and poor care coordination. He died in the 12th week. We knew we had to do something to improve healthcare whilst Fred was dying. I began the first mural as Fred entered hospice care.
I am still a Mom, but now a widow. I became an advocate and then an activist. I will never stop until care improves nationwide.
Q: You’re an artist and one of your first big projects was creating a series of murals about healthcare standards – can you tell us a little about that?
A: I have been doing art since childhood and I am best described as a self-taught artist. When Fred was suffering and we realized much of health care was deeply dysfunctional, I began asking folks to donate wall space for murals focused on health care culture shift. The second and largest mural in the medical advocacy series is entitled “73 Cents.” The title refers to the per-page cost for your medical record in the state of Maryland. That painting is 17 feet by 70 feet and it depicts our family in darkness stuck within a closed data loop. This painting became part of the national healthcare debate and affected the public understanding of two pieces of legislation: ACA and HITECH.
[tweet_box design=”default”]Artist and founder of the Walking Gallery, Regina Holliday is working to grow a worldwide patient rights movement.[/tweet_box]
Q: How did that effort evolve into “The Walking Gallery?”
A: You can only paint outdoor murals in temperate weather. In the fall of 2009, a twitter friend reached out with the suggestion I paint art jackets. Then in 2011, I went to the opening of a new Kaiser Permanente health center in DC and suggested that we do an art show there. It was a beautiful space where we would wear the art on our backs. That summer The Walking Gallery was born with 56 walkers and a handful of artists. We now have 43 artists and 357 walking members in The Walking Gallery.
Q: You recently published a memoir, The Writing on the Wall – can you tell us a little about the themes you touch upon in the book?
A: I wrote “The Writing on the Wall” to help regular people understand the well of sorrow that informs our cause and hopefully from that understanding they will act to improve things without having to go through such anguish personally. The book explains my childhood abuse and how that informed my understanding of the trials a patient suffers. The situations are unfortunately quite similar. It also helps light a path to becoming an activist focused on improving the care for us all.
Q: You started writing the book about five years ago but mentioned a sense of urgency to get it published this year. Do you feel like we’re at a watershed moment in patient data access?
A: This winter I suffered through a bout of whooping cough and was not able to be as physically active as I usually am. During those months I painted a lot of jackets and wrote feverishly on the book. I did not know why I 
felt compelled to do so, but have learned through the years compulsion often leads to discernment. In April, prior to attending HIMMS, I found out that CMS was considering replacing a requirement within Meaningful Use stage 2 that 5% of patients view, download or transmit their data within a reporting window with a provision that only 1 patient needed to do so. This proposal of CMS is directly opposed to the last 6 years of my advocacy work. My book was published in April and I hope it explains to many why patient data access is so important. Patient data in healthcare can be hard to correlate from notes to computer systems, that’s why we need software like NLP (Natural Language Processing) from companies like Foresee Medical, to help with keeping patient data ready at hand, easy to understand and have access to for the right needs.
Q: What are your advocacy goals for 2015 and how can people help?
A: The Walking Gallery will number over 400 members by the close of 2015. We are always accepting new members. Please reach out to me to join the movement as either a walker or an artist.
I am looking at properties that could become the Walking Gallery Center for Art and Healing in Grantsville, MD. I hope to have a property secured by the end of the year.
We just hosted a patient run a medical conference called Cinderblocks2: The Partnership with Patients Continues in Grantsville, MD in June. It was a great event and attendees were so excited that they are planning a half year event in Tucson, Arizona Dec 3-5, 2015. We hope some of you can join us. We also will have our annual event again next spring May 19-21 in Grantsville, MD. Cinderblocks is a lot like if Burning Man met healthcare. It is a great coming together of minds in common cause.
You can follow Regina on twitter @ReginaHolliday and on her medical advocacy blog. Become an advocate yourself and Sign up to share your experiences with Health Stories Project!
