At the dawn of the electronic health record, activist Regina Holliday wields an unlikely weapon…a paintbrush.
Just six days after Regina Holliday’s husband died, she started painting a mural on the side of a gas station, off a busy street in Washington, D.C.
“Fred’s in the center of the painting,” Holliday says. “I started with Fred because I wanted to have him back so desperately.”
Holliday made the painting in June of 2009. Her husband Fred’s decline from kidney cancer had been quick. He passed away just 12 weeks after being diagnosed. He was 39, the love of her life, and they had two young kids. Fred is depicted in the mural lying on a hospital bed, eyes closed, his left arm dangling off the side. He’s grasping a pen. A doctor is nearby on his phone, and others are looking at a computer or adjusting his IV.
Regina has painted herself across from Fred, stretched between him and a nurse. She has three faces. The image is jarring.
“I’ve got a plastic Halloween mask on, facing my husband, and that plastic halloween mask is a pretty girl, because what I’m trying to be is this pretty, loving wife, while my husband is going through all this.”
Then, there’s her face, struggling with the situation, and her caregiver face, looking to the nurse.
She designed this mural during her husband’s rollercoaster of care. She says it was a constant battle to get information, to understand what was happening and what her husband needed. She says doctors told her to stop asking questions.
The mural contains quotes and symbols. A big one is 73 cents in change, right beneath Regina. It’s what one hospital wanted to charge her, per page, to access her husband’s medical records in the midst of their crisis. She says they told her it would be a 21-day wait.
“It’s sort of like a slap in the face,” she says. “After all that you’ve done, after the $60,000 it cost to be in this hospital, you’re going to charge me 73 cents per page, just to see info we’ve already paid for?”
She saw technology as being designed for the health care system, but not for the patients. She says vital information was in that record, information that, even without a college degree, could help her ensure that Fred got better care.
It was that moment, that breaking point, Holliday recalls, that propelled her into a new, lifelong pursuit of improving patient access to health information.
Channeling anger and awareness into art
Holliday has always loved to paint, and she made the case to the gas station, at the time of Fred’s death, that a mural would solve their graffiti problem. So she channeled her anger and grief into art, and in doing so, turned this 20-foot-by-50-foot mural on Connecticut Avenue into a sort of ground zero for a patient movement in the electronic medical record world.
Because a little lady making a big splash about her husband’s hospital nightmare on a busy D.C. street, smack dab in the middle of heated health care debates of 2008-2009 that were leading up to passage of the Affordable Care Act, caught some people’s attention.
“I talked to hundreds of people while I was making this painting, because people would come up to me, and they’d start sharing with me their health care stories and what had happened to them,” she says. “And some of them were horrific stories, but it was good to talk to people as equally as broken as I was.”
Soon, Holliday was being invited to press conferences with lawmakers. She attended public meetings on Capitol Hill, asking questions about the needs of patients in designing health technology policies. She gained a following, social media helped. And about two years in, her mural art changed course. It literally caught new legs.
The walking gallery of health care
Someone reached out to Holliday on Twitter, looking to wear a patient story in a medical conference where patients were not invited.
“So I painted the story of Fred and I on her back, and she wore it and she talked about it,” Holliday recalls.
From there, she started painting the stories of other people’s health care experiences on their suit jackets. It turned into a collection of mini murals, on people’s backs, traveling to spaces where the patient story has often been left out. Regina called it the walking gallery of health care. The idea was to remind everyone—hospital executivess, policymakers, and others with power—that we are all patients.
The paintings that Holliday does on jackets create a walking gallery. (Elana Gordon/WHYY)
“So when they go to health conferences, a gallery starts to form because there are these paintings literally walking down the hallway and you’re walking amongst them,” Holliday says. “And the person who’s wearing it becomes a docent of their life. “
“I saw Regina’s art for the first time, and I remember grabbing her hands and saying, ‘Thank you for giving me permission to be angry about what happened,” recalls Whitney Zatzkin. She was working in government affairs when she joined the gallery. It was after her stepmom died of bladder cancer, after she says early warning signs were missed. Now Zatzkin is leading a project aimed at improving care. I met up with her and a few other people who are part of the gallery in D.C.
“It’s great, because it gets people asking questions,” says Lygeia Ricciadri, whose jacket portrays her experience of wanting to have a natural childbirth and the challenges of bridging that in the hospital environment.
Ricciadri worked in the federal government for many years on patient engagement. She’s now a consultant.
“If you live in the policy world or the business world—and I live in several different worlds—often conversations are very based on economics and other abstract ideas, and they forget the real true every day truths of being a person,” she says.
“I love going to a new conference, and going my first day without my jacket and observing,” says Zatzkin. “And then going the second day with my jacket and monitoring how the conversation changes.”
Some people, she says, run up and express how much they love the art.
“And then there’s a whole other world of people who were my best friends the day before and are like, ‘Oh, you’re the weird punk-rock chick in the corner…what are we doing?'”
Holliday and others say, at first, people seemed frightened, thinking they were angry patients. But she felt they were confusing anger with passion.
An expected presence
Now the jackets have become more embraced in the digital health sphere. They’re almost expected conversation starters, serving as a reminder of why people do what they do and what’s at stake.
Conferences often grant walking gallery members special access to events that would otherwise be pricey. And in the world of health care and technology, that’s a big deal. These are often the spaces where policies take shape, where leaders in the public and private sphere get their ideas.
Several of Holliday’s paintings on jackets. (Courtesy of Regina Holliday)
Holliday has painted over 400 jackets now. She doesn’t sell them. Other artists are involved, too, and she has painted stories of everyone from a homeless man in Baltimore to a lead doctor at a Kaiser Permanente think tank to the National Coordinator for Health Information Technology for the U.S. Department of Health and Human Services.
“I wear it on many occasions, but particularly when I know I’m going to be speaking about the consumer and the important right that they have to access their health information,” says Dr. Karen DeSalvo, an Acting Assistant Secretary for Health and National Coordinator for Health Information Technology with the U.S. government. “It’s a way you can start that conversation and get the word out even more, without it just being on a piece of paper or in a speech.”
Her coat portrays her with her family. She’s holding a stethoscope and a lunch tray.
“Because my coat is about me being the product of a free lunch. I was a poor kid, and we were helped by the social services system.”
Patients increasingly front and center
DeSalvo says more and more, patient interests are at the fore in shaping digital health policies. Patients are being seen as partners in their care, verses having care done to them. Many groups are pushing for the patient voice to be front and center.
As a more recent example, she points to a major meeting that took place a few weeks ago where federal leaders and some major health care companies announced a commitment to give consumers access to their electronic medical records.
Holliday agrees the whole field has been shifting in a major way.
It’s easier to access lab results now and patient portals, or electronic messaging systems, can make it easier to get information.
“Everything’s flipping and changing,” she says, “And so the patient experience has become really front and center these days, compared to back then.”
A continuous pursuit
It’s been seven years since Holliday’s husband, Fred, died. Regina thinks Fred’s health care experience would be different today. She wonders if he’d still be alive. Even so, she says there’s still a ways to go, and she doesn’t want to lose ground.
As for that mural off of Connecticut Avenue, portraying her and Fred’s roller coaster of care, it has weathered some over time. She doesn’t get back to it much now because she lives about three hours away.
So when she stops by on a recent afternoon, and notices a few areas where bricks and paint have chipped off, she darts away to a nearby toy store where she used to work, and returns with some paint.
She squeezes it onto a palette and mixes it.
“I need a whole bunch of colors because I’ve got to match tone to the colors that are there right now,” she explains.
Then she hoists herself up on the thin brick wall, about four or five feet high, almost as tall as her. She wants to repaint those parts that have come off, to preserve Fred’s story. She leans against the mural for balance, and then reaches up to an exposed spot in the gray-blue sheet that’s wrapped around Fred, lying there, eyes closed, on that hospital bed.
Just above her arm and paintbrush, Fred’s own arm rests on that sheet. He’s holding a piece of paper. On it is a message he wrote. It says, “Go get ’em, Regina.”
“I miss Fred every single day,” Holliday says, “But on the other side of that, I’ve been put in a position in my life to try to make the world better, to help other people. And that’s a blessing.”
Regina Holliday’s signature on the mural she painted of her late husband, Fred. (Elana Gordon/WHYY)