Just a Girl:
The Power of the Story in Patient Art Advocacy by Regina Holliday
The Power of the Story in Patient Art Advocacy by Regina Holliday
Presented at Microsoft Connected Health Conference on Wednesday April 27, 2011 as part of the panel "The Power of Consumers, Researchers and Patient Advocates in Healthcare".
Where does a story begin, and where does it end? This is Frederick Holliday II, my husband, a college professor, and all around great guy. I am Regina Holliday, just a girl and store clerk and art teacher. We were regular people who met in a painting class at OSU and fell in love.
What is your favorite story? Mine is Mother Hulda. But my husband loved Buffy the Vampire Slayer, and he loved it so much he wrote his dissertation on it. And he loved the Dark Tower by Stephen King so much that he died in its shadow.
This is our story. We wed in 1993 and had two wonderful sons. On Christmas 2007, we took our only formal family portrait. It was a hard Christmas. Fred was working three jobs, and so was I. And Freddie, our eldest son, had just been diagnosed with autism.
Our New Year’s resolutions for 2008 were:
- Medical insurance for the whole family.
- Get little Freddie into a special needs school.
- Fred gets a job in his field.
- Spend more time together as a family.
- Get a two-bedroom apartment
In the fall of 2008, Fred was very tired. He went to his doctor and was diagnosed with hypertension. In January, February, and March of 2009 Fred was in constant pain. He visited two emergency rooms and was sent home. He visited his doctor’s office many times and was given pain pills but no diagnosis.
Fred was hospitalized on March 25 for tests. Then at 11:00 am on March 27, Fred called me while I was at work selling toys. He said “Reggie, the doctor was in, and he told me I have tumors and growths in my abdomen and a 3cm tumor in my kidney. Please come as soon as you can--I am so scared.” I got to the hospital within 30 minutes, but the oncologist had already left town for a medical conference and would be gone for the next four days.
I asked everyone involved in Fred’s care for information. “What was the diagnosis? What were the treatment options?” Then I would research Fred’s condition online.
After weeks of hospitalization and little data access, I went down to medical records to ask for a copy of Fred‘s entire electronic medical record. I was told it would cost 73 cents per page with a 21-day wait.
Some folks upon hearing our tale have said I must have not tried very hard to get the record. But at the same time I was trying to get a copy of the EMR, I was also trying to get a galley of an unpublished Stephen King book. As I researched Fred’s condition, I grew concerned that he might not make it to the fall. So I emailed the store book buyer and she emailed the rep, who emailed the publisher, who got approval from Stephen King. Fred had a copy of Under the Dome within 4 days of request and seven months before it was published.
On Saturday April 18, 2009, Fred’s oncologist said, “We’ve decided we’re sending you home on a PCA pump.” The doctor left, and we burst into tears. Fred turned to me and said, “Go after them Regina; try to get me care.” After five days of attempting a transfer to another facility, Fred was sent with an out of date and incomplete medical record and transfer summary. The new hospital staff spent the next six hours trying to cobble together a medical record using a phone and fax machine. I eventually got a copy of the record, and I read it in about three hours. The document was filled with errors as well as actionable data. I felt we must do something to change things for other patients. For even with all its errors, it was instrumental in helping me provide care for Fred in the last 56 days of his life. So I took Fred’s data and painted it as a 5x6 foot mural on the wall of a local deli for all of our neighbors to see.
Next my new friends in the world of Health 2.0 began blogging about our attempt to change the system.
How does social media affect medicine? Fred was hospitalized in five facilities in eleven weeks. He only had WIFI access in two locations. As I could go home and log on, I was able to use the Internet for research and support. Neither of us were able to communicate with medical facilities using Internet portals.
I got on Twitter on May 3 to talk with health 2.0 blogger Christine Kraft and kidney cancer survivor e-Patient Dave. Within one day we were in email contact and spoke on the phone. By ten o’clock on May 4, I was talking with Dave’s oncologist about my husband’s cancer care.
I joined Facebook in the fall of 2008 to organize our son’s birthday party. In the months during Fred’s hospitalization I would use Facebook as an information clearing house. Hundreds of friends and family would log in to check Fred’s medical status.
We fulfilled our final 2008 New Year’s resolution on June 11, 2009. We moved into a two-bedroom apartment so I could care for Fred in home hospice. He died six days later on June 17.
On June 21, I wrote a blog entitled The Battle Begins. I vowed I would take on a medical system that had treated my husband so poorly and I would do it as an artist. Six days after Fred died I was on a ladder painting the mural 73 Cents.
I learned about the power of art advocacy. I made new friends and contacts in social media and spoke to reporters from all over the world.
A quote by Simon Schama describing Guernica is included in the mural and asks, “Shouldn’t art stick to what it does best- the delivery of pleasure? And forget about being a paint brush warrior, or is it when the bombs are dropping we find out what art is really for?” 73 Cents became part of the national health care reform debate. And just like the internet, it advocates 24 hours a day, and you cannot tell a wall to shut-up.
On Tuesday October 20, 2009 we dedicated the mural by singing songs from Buffy the Vampire Slayer. We sang my next question, “Where do We Go From Here?".
In Buffy, there are many foes to conquer. Is the Big Bad in medicine overall spending on health care? Or is it lower life expectancy due to lifestyle? Or is the Big Bad what happens if patients are kept blind, deaf, and dumb?
Last December I attended the IHI patient summit, and I learned about the Triple Aim. I heard about the IHI fellow’s campaign “What can you do by next Tuesday?” I thought of Tuesday nights watching Buffy with Fred. It reminded me that “just a girl” could save the world.
How would the girl in me change things? The way patients are treated reminds me of child abuse in the 1980’s. No one talked about it. Then we heard of Adam Walsh and saw faces on milk cartons. We were given permission to speak out about abuse. There were hotlines we could call, and those hot lines saved lives. I know. I used one myself.
We must give patients and caregivers permission to tell their story and provide platforms to spread their tale. We must ask them to speak up.
What can a metro rider do to support change? Be as diligent in a hospital as in transit. Expect to be told realistic wait times in hospitals. Promote the use of smart cards, instead of dependence on paper transfers.
How would a toy store clerk promote better care? Compare POS system adoption to EMR adoption and ask, “What are we waiting for?”. Ask "Why do we have complex toys like the 20 Q ball, but we don’t have CDS for patients?". Think outside the box on what helps people to heal.
How would a mother of a special needs child create change? Demand that the level of inclusion that is part of the IEP process become the norm in medical settings. Use the right to data access within Meaningful Use, like a parent uses the right to records access in education. Support tools such as EMR avatars to overcome “face-blindness” by helping people, autistic or not, recognize faces and facial expressions, including pain.
How would a preschool teacher promote positive change? Discourage using a changing table for food consumption and wound care supplies. Firmly encourage hand washing in a hospital just as she would in her school.
How would an artist, story teller or poet promote Patient-centered care?
What does street artist Shepard Fairey have to say? “The more stickers that are out there the more important it seems. The more important it seems the more people want to know what it is. The more they ask each other. It gains real power from perceived power.”
Or as Christine Kraft would say, “I can tell you something about stories: They drive engagement. What we don’t typically consider (and this is why stories are so controversial) is that stories are legitimized by an audience, not a storyteller. That is why some stakeholders resist--they don’t want to legitimize a story, a rad idea or tribute or pain, by giving it a platform. Enter the web, the blog, the phone, the community, the email thread we’re on. Stories. You know them when you see them. And sometimes you need to see them to believe them."
So, what would you do to change things? What would you do as a wife or a mother, a sister or brother, a co-worker, or friend to change things for them?
I would like to close with this poem that ties it all together.
And remember sometimes a wheal is a welt.
The Wheals on the Bus
By Regina Holliday
The wheels, the wheels: they are a turning,And past abuses do impress upon this fight.And thoughts of riots, rights and rulings,Spin in circles in the shadows of my mind.
I go to sleep at night and think of coding.Is our savior high within the data cloud?Is access to our care, as great as knowledge?Where shall peacefulness be found?
Does freedom lie within a soup of letters?Do PHR’s and IEP’s and EKG’s and HITOpen doors to our gaining knowledge?Is ARRA an acronym, or is it a primal roar?Arghaa! Arise! An EPI pin, to stimulateThe growth of understanding,That we are all Patients in the End.
Here, I take my stand. I can do no other;For past abuses do inform this time,And, two by two my Luther’s tell meTo demand my data rights ,To be resolute, that separate is not equal,And that no man,Should standBetween me and the Word.
Is 1135 a page in the Annals of Oncology about Kidney Cancer?Or is it Volume 113 of Pediatrics no. 5 in 2004: “The Genetics of Autism.?”Or is 1135… simply, “JESUS WEPT.”I will see you in Galilee, Galilee, GalileeI will see youIn the ring, the circle, the circuit,And the wheals they are returning….
The wheels on the bus go round and round,Round and round, And Rosa parked.She refused to give up her seat at the table.ICD-10, Do you intend, to save me from my coding?Do you entreat, that we retreat?And expect the patients, now informed and comprehending,To sit idly by awaiting your instructions?
Physician Heal thyself,And let empowered patients speak,And draw attention to those that seekA better and healthier tomorrow.