Death of the Paper Transfer

It wasn't too long ago when Regina Holliday was painting neighborhood murals of “pretty things”.

Now, her paintings hold a deeper meaning, such as in Death of the Paper Transfer.

The painting shows her riding on a bus with her late husband, Fred, depicted deep in treatment for Stage IV Kidney Cancer.

“I’m posed like the Rosa Parks of healthcare,” she said. “I’m basically refusing to get off the bus. I’m refusing to accept the status quo.”

Fred’s hospital gown is made of transfer ticket stubs, which were used by the Washington, D.C. bus system for passengers switching from bus to bus. The incompetent system was brimming with fraud when it was replaced by smart card technology in 2008.

Healthcare is behind in embracing the electronic transfer of data and is yet to fully experience the efficiency that is now so familiar in other industries. To Holliday, technology is the savior of healthcare, portrayed as binary code pouring into the bus as sun rays and clouds.

“The cloud will set us free,” Holliday said. “Being able to send data via the cloud is the key to all of this.”

“go after them, Regina”

Some people say that Holliday’s story is more about a bad doctor than a bad system. The Washington, D.C. widow argues that changes in the healthcare system can help protect patients from bad doctors, in addition to freeing the good ones from the obstacles that hinder care.

Holliday has told her story many times, but it still brings back the emotions. Dates, quotations, and other details remain vivid, as they do when trauma carves events into memory.

While her sick husband lay in pain, the hospital failed to communicate important information and provided poor customer service, she claims, adding that the staff was often condescending and seemingly indifferent.

Regina Holliday writes a medical advocacy blog

Holliday was astonished at her lack of access to health information regarding her husband. She requested his full medical record and was told it would cost 73 cents per page with a 21-day wait.

Stuck in a desperate, painful situation, the Hollidays’ tolerant appreciation for the healthcare system was diminishing fast. The breaking point came when the doctor said he was sending Fred home with a PCP Pump, an instrument that allows patients to administer their own pain relief. 

“I just looked at my husband and he looked at me and we began to cry — because you say that when you are going to send someone home to die — When you’re not going to treat them anymore,” Holliday said, overcome by emotion. “They were sending us home to die without us ever seeing his medical record and the tests that said this.”

The doctor left. Fred turned to his wife. “You go after them, Regina,” he said.

“he’s going to have continuity of care”

Holliday honored her husband’s request by taking control of his treatment, seeking second opinions, new care teams, and transferring to a different hospital. It wasn’t a seamless transfer, as the previous hospital sent the new one an incomplete medical record and transfer summary that was two weeks out-of-date. 

“That meant the new facility could provide no care other than a bed for six hours as they tried to cobble together a medical record using a phone and a fax machine,” Holliday said. The hospital lacked the information needed to put him back on his medication or the dietary requirements required to order him food.

Staff assembled what they could, but Fred’s picture was still incomplete. The new doctor requested Holliday get the entire record from the previous hospital.

“I laughed and said I tried for weeks to get that information and I knew it wasn’t possible. And they said, ‘oh, you will get it this time. Because you’re just a courier. We’re asking for it.’ I went back to the old hospital and they printed out my husband’s medical record in an hour and a half for the new doctors.”

The new doctors analyzed the documents and then returned them to the amazed Holliday.

“They said, ‘well, we don’t have any place to put it in our system. It’s just a bunch of papers and we don’t have anything we can do with that. So we’re giving it to you. If you always have your husband’s records he is going to get the best care because you’re always going to be with him. He may be treated at a lot of facilities, but if you carry his record with you, he’s going to have continuity of care’.”

For the next three and a half hours, Holliday pored through the documents.

“I was furious,” she said. “It was full of actionable data. If I could have read this while Fred was being treated, he would have had better care. He would have had fewer injuries and infections…And there were medical errors as well. Just being there day-to-day, I could see that some things weren’t true.”

73 Cents

Armed with new data and her flair for art, Holliday created a visual ‘one-pager’ to instantly communicate the most important details about Fred to anyone caring for him. The sheet listed his vitals and included a diagram of his anatomical structure, flagging areas that had been affected by disease.

Holliday painted the cheat sheet on the wall of a local delicatessen to begin a discussion on medical record access and readability. The design was based on food packaging nutrition labels.

Holliday cared for her husband at home for the last six days of his life. Soon after his death on June 17, 2009, Holliday began painting a 20 feet tall by 50 feet wide indictment of the healthcare system.

In 73 Cents, a full cast surrounds Fred as he receives a blood transfusion. The painting is heavy with symbolism, from Holliday herself shown with three faces to the bound medical staffer standing in medical waste.

“In that painting, there are a lot of figures, but not any of them are making eye contact with each other within the frame,” Holliday said, adding that the lack of communication is the “most horrific thing in medicine.”

“everyone is invited”

Holliday now dedicates her life to painting, speaking, and writing about the need for the patient voice in healthcare information technology.

Now a familiar name in the world of patient advocacy, Holliday encourages everyone to get involved, even those without a Ph.D., M.D., or M.S. after their name.

“Everyone is invited...There is no one that is beneath this conversation,” she said.

Holliday makes her mark on the dialogue with references to pop culture. 79 Cents, for example, contains quotations from Harry Potter, Buffy the Vampire Slayer, and Shakespeare. (They all say the same thing: “It’s time to take a stand.”)

“If you talk to the common man, the every person, what connects us all? We’ve all watched the same films, we’ve all read the same books,” Holliday said. “It is a matter of creating a common language for all of us.” Such references would delight her husband, an assistant professor of literature and performing arts who loved to discuss the impact of media.

Holliday had been a typical mother of two, Boy Scout Den Leader, retail worker, preschool art teacher, devoted wife. And then she had the misfortunate to become familiar with the flaws of the healthcare system.

“The problem with medicine in the U.S. is not that it is run like a business, it is that it is run like a bad one,” she said.

Holliday has responded by lending her talents to the movement and encouraging others to do the same.

“If you are a poet, please write poetry about it. If you are a musician, write songs. If you are an artist, paint,” she said. “If you are a housekeeper, start talking about to us about better infection control.”

Central Illinois volunteer opportunities

The Central Illinois Health Information Exchange (CIHIE) is a network of electronic health records that will connect participating providers in 20 counties in central Illinois. Eventually, this regional HIE will connect to other HIEs to allow for statewide and national exchange.

You may have already visited a doctor that has gone electronic records. However, even these modern medical professionals may still not have immediate access to records from other hospitals or facilities. This is where CIHIE comes in.

Holliday is a passionate advocate for patient access to medical records. Health Information Exchange makes patient access possible through patient portals, which would be similar to your online banking account. However, CIHIE will not be implementing portals until the infrastructure is in place and flowing with enough data to be of significant use to patients.

If you are interested in lending your talents to be a part of the patient voice in health information technology, contact CIHIE.