When Regina Holliday was 37—working in her local toy store, teaching preschool art and raising two young sons—her husband, Fred, got sick. The couple left their home in Washington, D.C., drove to a hospital in the suburbs, walked through a polished entryway and welcomed the care of medical professionals.
But rather than encountering the smooth, modernized system she had envisioned, Regina found herself over the next three months struggling to navigate the complex, often rusty workings of a healthcare system playing catch-up. In an age of heightened customer service ideals and abundant, accessible electronic information, she battled to get face time with overtaxed medical personnel and to obtain her husband’s medical records. Feeling that she couldn’t know enough about his condition, she spent nights doing her own worried research online. Tumors and growths in the abdomen: was he stage 2 or stage 3?
“I just thought, ‘This is insane,’” she recalls. “In this day and age, this is the way we’re doing medicine.”
Frustration for many of us slips away as we distract ourselves with new activities and interests. Regina’s, however, sprang from a simple question—In the age sophisticated computing, mobile devices and high-speed Internet, shouldn’t it be cheap and easy to access your own family’s medical records?—and it transformed one stressful night into an iron commitment: she’d challenge the system through art.
“I just started writing a letter to everyone we knew,” Regina recalls, “and I asked that anyone who had wall space please give it to me. And then I spammed a thousand people.”
Her first big get was a local delicatessen, where she painted a 30-square-foot mural. Her next: a local gas station. Sometimes people would stop to offer donations; sometimes they’d stop to talk. And next to every painting was a placard with a link to a blog, which Regina started to populate with explanations, information and narratives about the anachronistic elements of the modern healthcare system. Eventually, she was asked to speak; next she was paid to speak. And then, in April of 2010, she found herself testifying before a subcommittee for meaningful use about why patients should have quick and easy access to their electronic medical records. Today, the rule is in effect in its incentive phase. Any facility interested in getting the money the legislation provides must grant a patient access to his medical record within three days of request.
Three years ago, Regina was happy creating neighborhood public murals, of children reading books, and dinosaurs, and movie stars.
Today she is a familiar presence as a patient-rights advocate and artist. She speaks nationally—about pursuing new health systems, better design and better ways of treating people—and creates on-site fine-art canvases, taking threads of conversation and weaving them together into their visual equivalent.
She can also be found on the street, where she sets up shop, often in front of medical providers, with the intention of disturbing passersby—trying to get them to to change their expectations as patients and to become engaged in their own health.
And she continues to create pieces for her walking gallery, a collection of 107 (and counting) jackets that capture the causes of the patients who wear them.
“Stories are transformative when given to Regina,” writes Kait Bragdon-Roe, a patient-engagement champion who owns one of the jackets. “She paints our hearts, our tears, our failures and even an occasional triumph; and she always paints the truth.”
Participants pay no money for the jackets but agree to wear them to medical conferences. The effect is a mobile gallery with a docent tethered to each piece of provocation.
“Most of my art is a tiny little bit disturbing,” she says. “There’s something a little quirky-weird about it. And it tends to make people ask questions.”
Regina’s husband moved through five facilities before he finally succumbed to kidney cancer, 11 weeks after first walking into the doctor’s office. But two-and-a-half years later, his wife’s passion is strong.
“This is my life; I’m on a mission,” she says. “I’m very much at peace and free.”
The Medicine X team is excited to be working with Regina Holliday to develop art for the 2012 conference.