KANSAS CITY, Mo. – Regina Holliday bounds across the stage at the old Sam’s Town casino, jumps onto a grey cinder block and flings her arms open wide in welcome.
Holliday, an artist and patient advocate from Washington, balances there for just a moment, beaming before the small cadre of advocates, doctors and tech gurus who are as determined as she is to make patients equal participants in every area of health care. They are here, on the banks of the Missouri River early on a Saturday morning, for a conference she has organized in just weeks.
They burst into applause.
The conference is far from typical. There’s no foundation underwriting it, no public relations firm managing it, and no hotel ballroom. Instead there is a scholarship system, donated food, and an educational center that still features the old-time river town set that once welcomed casino-goers. Green street lamps rise above the old shops and restaurants, a sign painted on the wooden wall advertises “trusty and honest” livestock brokers, and the curved wooden ticket counter gleams next to the rows of black, plastic chairs for the audience.
It’s classic Holliday: grassroots, offbeat, and unabashed.
Three years ago Holliday was a grieving widow on a solo mission to protect other families from what hers suffered as her husband died of kidney cancer. Today she’s a high-profile advocate with access and influence few other individuals can match. Her policy work focuses on making sure patients have access to their electronic medical records, but along the way, she has emerged as a leader among health care advocates of all kinds who agree the patient perspective too often is ignored when policies are developed and care is given.
Holliday hoists the cinderblock, deposits it on a red leather chair on the stage, and begins to tell the kind of personal story that has helped give her such reach.
When Holliday was in fifth grade in small-town Oklahoma, her school couldn’t afford bookshelves for her classroom, she tells the gathering. But her teacher arranged for the local lumberyard to donate cinderblocks and two-by-fours, and the children carried them back to the school where they constructed their own simple shelf.
“I will tell you there was no bookshelf more loved and appreciated than that one,” Holliday says. “It may not have looked pretty, it may not have been the most grand, but it was ours.”
It’s the message Holliday wants her audience to carry with them throughout the weekend: that despite their modest means, they can build something worthwhile.
“We may not fit a traditional mold but if we work together within this space, we will change it for us all and make it better,” she says. In her writing, Holliday is fond of words like “must” and “shall,” and when she is on stage, she speaks with deliberate pauses and dramatic changes in volume, an overall effect that brings to mind a sermon.
Her personal, passionate delivery is part of what has persuaded advocates from New York, Los Angeles, Austin, and elsewhere to fly in for the weekend, most of them on their own dime. They are a who’s who of advocates already working diligently for their specific causes, from lupus and breast cancer to reducing infections in hospitals and improving end-of-life care. For most, it’s unpaid work they do on top of their day jobs.
They’ve come because the “Partnership With Patients” conference is an opportunity for them to learn how to be better supporters of those causes through workshops on public speaking, talking to journalists, and using social media websites like Facebook and Twitter, as well as to learn more about the latest in health care policy.
But there’s a bigger goal, too: to begin figuring out how patient advocates can work collectively to make the entire health care system more responsive to the ideas patients have about how to improve care. They are in search of a system that truly is collaborative, not one where the perspectives of government officials or doctors always trump those of patients and their families.
The advocates are optimistic that they have good timing. As the health care system reorganizes itself in ways that aim to make health care better, safer and cheaper, they see an opening to make the patient voice part of those reforms.
Becoming An Advocate
Holliday, who is 40, has made her mark on the health care world by telling stories that draw on her own life and the lives of others to illuminate why health care has to change—not just for those who already have been through the system but for everyone who will encounter it.
Dave deBronkart, a well-known patient advocate and speaker, likes to say that “patient is not a third-person word,” by which he means that just about everyone will be cared for at some point in their lives. He says the challenge is “how do you convey this to the people who make decisions in a way that makes a difference? And that is Regina’s gift.”
Holliday’s own effort to make her voice heard began with the back wall of a BP gas station on Connecticut Avenue in Washington. Just one week after her husband Fred, a professor of film at American University, died in 2009 at age 39, leaving behind two young sons, she propped a ladder against that wall and started painting, trying to express everything that had gone so very wrong for their family.
In the mural, Fred lies in a hospital bed with his eyes closed, and one hand hangs toward the floor with a pen in it. In the other is a note: “Go after them, Regina. Love, Fred.”
That’s what he asked her to do, when after weeks of trying to get answers about his cancer diagnosis or the course of care he would receive, the doctor who had always been too busy to answer their questions unceremoniously announced he was sending Fred home to die.
The mural also illustrates her struggle to get a copy of Fred’s medical record. When she requested a copy of the hundreds of pages, the hospital balked. Finally, they said that it would be $0.73 per page and would take 21 days
Those 73 cents -- two quarters, two dimes, three pennies -- are lined up under Fred’s bed in the mural. They became for Holliday the epitome of what had gone wrong, because when she finally got a hold of the record, what she found made her furious.
“It was filled with data,” she says now, her brown eyes flashing. “If I could only have read it on a daily basis, he could have gotten better care.”
"The notes in the record showed that Fred should have had a urinary catheter, that his lidocaine patches were left on too long, and, most devastatingly, that what the Hollidays thought was a three-centimeter tumor was really eight-centimeters. And there were two, one in each kidney. Knowing sooner, and making sense of the information with a doctor by their side could have helped them make more informed decisions about how to care for Fred.
Patient access to information became Holliday’s rallying cry, and as she went to every meeting and conference she could to learn more, she told her story again and again.
Over time she gained a reputation for her ability to pair personal stories and policy. She started getting invited to government meetings and onstage at conferences as a patient speaker. Ted Eytan, a family physician who heads Kaiser Permanente’s Center for Total Health in Washington, has known Holliday since her early days as an advocate and says that what makes her so powerful is that she is driven by a sense of mission.
“She doesn’t mind flying coach for 22 hours. She doesn’t mind not getting the star treatment. She doesn’t mind talking to people who maybe have not been nice to this movement. She will talk to anyone at anytime,” he says.
That doesn’t mean she’s afraid to let people know how she feels.
Eytan and deBronkart both point to a meeting they attended with Holliday and the medical director of a Washington-area health care organization about how much access patients should have to their electronic health records.
What could a patient possibly spot in a record that a doctor or nurse wouldn’t, the doctor asked.
Holliday told him about how Fred’s doctors had ordered a walker for him but it never arrived. Had she been reading the record, she could have asked about it. She told him about how Fred’s record indicated he needed a catheter and how he never received one. She would have noticed.
Okay, said the doctor. But this is easy for us to imagine, sitting here with our college degrees. What about less educated people?
I don’t have a college degree, Holliday fired back. And she changed his mind.
The Walking Gallery
While she has immersed herself in the policy weeds, Holliday still uses art as a way to tell her story and the stories of others. She paints jackets for patients and other health care stakeholders from across the country. On the back of each one, she creates a single frame that represents the story of the person who will wear it into medical and policy conferences where the voices of patients and their families rarely are heard. She calls it the Walking Gallery.
Her idea is this: a doctor’s coat, a CEO’s suit jacket, or a badge stamped with the name of a hospital system or government office functions as a kind of uniform. When you walk into a conference with all of the proper professional accessories, you’re just like everyone else. But, if you put a picture on your back, you’re marked as different. Holliday’s theory goes that you are therefore more conscious of your own story — and of the fact that tens of millions of patients have stories just like you do.
Holliday has painted more than 200 jackets, and while that’s not many in the grand scheme of the health care system, she has brought in big names like Todd Park, chief technology officer at the White House and Farzad Mostashari, who heads up health information technology at HHS.
Park calls Holliday’s work “incredibly cool.”
“It’s a reminder that all of this work is about improving patients’ experience and patient outcomes,” he says.
Holliday’s own jacket is primary school red with a black collar and a giant “A” emblazoned on the back that stands for Little Miss Type A Personality — that’s what Fred’s doctor called her, when he found out she was running around the hospital, trying desperately to find out why he kept getting sicker. It wasn’t a compliment.
Holliday is wearing the jacket that Saturday night at the conference last September. About 75 people are there, many of them advocates relishing the opportunity to connect with others who share their passion and often a personal story about the health care system.
“Patient advocacy is such a strong passion, and it’s not something you take on like, oh I love model making or I love chocolate desserts. It becomes such a driving part of your life. When you find somebody that feels that way, it’s not just validating but exciting,” says Pat Mastors, a hospital safety advocate who is based in Rhode Island and helped organize the conference. Mastors, a former television reporter, became an advocate when her father died of an infection after undergoing routine surgery.
For those on the partner side of the equation, the conference is a chance to learn more about what patients want. Bunny Ellerin, senior vice-president of the pharmaceutical marketing company Intouch Solutions, says she has noted the rise of what she calls “patient opinion leaders” in recent years and thinks it is critical Intouch’s clients understand that perspective.
“Just putting people together and connecting, I find, is often a very important first step,” she says.
Holliday’s advocacy is now a full-time job. She is paid to paint and speak at conferences all over the world, and she relishes being on stage.
But even after all these years of telling her own story, Holliday says she stills find herself short of breath and in tears when she remembers what happened, visualizing each step to the ending she knows she can’t change. She hopes those she speaks to find themselves crying along with her.
“I want you to be so touched that you can’t go back to your normal life anymore,” she says.