In my last post, I talked about the concept of slacktivism in the era of social media. Slacktivism is sort of a pseudo-activism , where participants takes part in gestures – like changing their Facebook profiles photos to that of a cause – that make them feel good, but are meaningless in making any real social change. True activism on the other hand takes time, energy and involves taking risks to influence change. It means that sometimes you’ll have to say things or do things that make others uncomfortable. It means you have to be willing to put yourself out there to make a statement and to keep pushing for change, no matter how many road blocks and brick walls you run up against. In fact, a brick wall might offer you the opportunity to become an activist. That’s what happened for Regina Holliday.
Many of you already know Regina’s story but I hope there are also many people reading this who are learning about her for the first time. Regina’s journey to becoming a patient advocate and health information technology activist began in January 2009, when her late-husband, Fred Holliday, began having chest pain from cracked ribs due to coughing related to a recent cold. At least this is what the emergency department and primary care physicians told told the Hollidays.
Fred’s pain continued and worsened throughout February. His physician gave him multiple prescriptions for pain medication but the pain remained. Then in March, Fred was diagnosed with metastatic kidney cancer. While that explained the pain, the information that the Hollidays found online did not point to a promising outcome for Fred.
Here the Hollidays hit their first brick wall—Fred’s oncologist. Regina wanted to have access to Fred’s medical chart so she could better understand and research his condition. This got her labeled, “Little Miss Type-A Personality” by the physician. He finally agreed to speak with her in person, on his terms. He insisted on talking to her only during his office hours. He did not shut the door and did not stop answering the phone as she tried to talk with him. Regina explained she wanted the chart to be able to better understand Fred’s diagnosis and to be able to look up information she didn’t understand online.
“He told me, ‘I don’t like people who research things online,’” she remembers.
Enter the next brick wall – lack of access to Fred’s health data and medical records. He went through multiple transfers—different hospitals, a physical rehabilitation facility, a palliative radiation facility. Each time he was transferred there was a new error in his medical record that affected his care, including a transcription error that lead to him to receive only 30 mg of the anticoagulant Lovenox when he was supposed to be receiving 90mg of the drug.
Fred’s information wasn’t even available to members of his health care team. At one point, the physician at the radiation clinic looked her in the eye and said, “Mrs. Holliday, I’ve been trying to reach your hospital and no one is answering me.”
In June, Fred was transferred to hospice care. He passed away on June 17, 2009, just 12 weeks after his pain began.
As Fred’s condition continued to worsen, Regina made up her mind to start speaking out so no one else would have to endure the type of situation she and Fred experienced. Fred had told her “Go get them, Regina.” In late May, she met with a small group of people who believed in Health 2.0 as a reform movement.
“When they asked me what the worst thing about Fred’s situation was, I said, ‘The lack of data access,” she says.
Just how was she going to get her story and her message about the importance of data access to patient care out there?
“Big murals,” she said. “I’m sure to get people’s attention that way.”
Regina decided to, as she puts it, “spam” her entire list of email contacts. Pumpernickel’s Delicatessen in D.C. offered up a wall so she could paint “Medical Facts” her first medical advocacy mural.
“The idea was if patients had a fact box, like foods have nutrition labels, [caregivers] would know what medical care to give right away,” she says.
Regina found another brick wall at a local gas station. Instead of being an obstacle it, like the wall at the deli, helped give her cause a voice. When she noticed the wall had been tagged by a graffiti artist, she asked the owners if she could paint a mural there.
“Graffiti artists don’t tag murals,” she explains.
This is where she painted “73 Cents” a tribute to Fred AND commentary on the U.S. healthcare system. The name is a nod to the amount of money the state of Maryland charges patients for copies of each page of their medical records.
As Regina took up her paint brushes to start the mural on June 23, 2009, Congress took up the debate on health care reform. Some members even took notice of Regina and she was invited to a press conference with Senate Majority Leader Harry Reid (D-Nev).
Regina’s art advocacy work moved from the immovable brick wall to the Walking Gallery. At the request of her friend Jen McCabe, Regina painted the backs of three suit jackets. Over the following years that favor for a friend would become The Walking Gallery movement. Today she paints the stories of others’ experiences with the healthcare system. Because the jackets are more mobile than a wall, the stories they tell can be brought to conferences and help facilitate the dialogue about what changes are necessary to improve healthcare.
“You’ll look normal and you’ll get into the room,” she says of the jackets. “But then everyone will see your back.”
To date, there over 230 jackets in the walking gallery. Pumpernickel’s deli is remodeling and will likely be painting over the Medical Facts mural. Her second mural, 73 Cents can still be seen on the gas station wall.
Regina has been featured in multiple media outlets like National Public Radio, the Washington Post and CNN. She has shared her experience at countless public, government and industry meetings on healthcare. She has testified before Congress. But she is not done yet.
“One of my goals is to have a series of easels set up in the Grand Hall at Health and Human Services during a health policy meeting. I want to see other people have the honor of painting the content of the day. There are so many artists in the world of health that we haven’t met yet,” she says.
More importantly, she seeks to effect real change in health care so others don’t have to experience what she and Fred had to go through.