The Writing on the wall is a story patient art advocacy focusing on patient data access via murals, social media and a walking wall of advocates who tell their stories.
The Writing on the wall is a story patient art advocacy focusing on patient data access via murals, social media and a walking wall of advocates who tell their stories.
KC Health at KC HealthThis is very educatoinal, inspiring and distressing all at once. But, I am only on the outside. I'm sure this represents a lasting legacy to a loving husband.7 months ago
The Writing on the WallA presentation by Regina Holliday
Everything I needed to knowabout being a patient,I learned inelementary school.
In 1978, there was a little boy named Freddie who lived in Marylandand a little girl in Oklahoma named Regina.
Patient Reported Data is very important.
14 years later,Fred would meet Regina on stage in a scenic painting class atOklahoma State University. We would talk of Stephen King’s Dark Tower. We would fall in love.
Fred andI married, worked and played together for many years.Iworked in a toy store.Fred continued his schooling and worked as video store clerk. In 2005, Fred would get a PhD in film studies and would write his dissertation About “Buffy the Vampire Slayer.” In 1998, Freddie III joined the family game followed by the littlest player Isaac in 2006.
From 1994 through 2008,I was working full time in retail sales,but I would try to find time to paint.
I would paintneighborhood murals.I would alsoTeach art at a local preschool.
The Holliday Family Christmas 2007
Everything we ever wanted… Resolutions January 2008:1. Get Medical Insurance for the whole family 2. Get little Freddie into a special needs school 3. Fred gets a job in his field 4. Spend more time together as a family 5. Get a two bedroom apartment Freddie’s IEP Binder
Fred was happy with his new job.But he was very tired,He went to the doctor and wasdiagnosed with hypertension.
During the months ofJanuary, February and March of 2009,Fred was in constant pain.
On Friday March 13th, We went to the ER because Fred was in so much pain .We waited three hours before being sent home.
The Last Primary Doctor’s Appointment: A Very Short PlayRegina: “I didn’t see you weigh him.”PA: “We don’t always weigh our patients”Doctor: “Mr. Holliday do you think maybe you are depressed?”Fred: (Looks up at Doctor with a look of dismay.)Regina: “Of course he is depressed. He is in excruciating pain. We want an MRI.… I am worried about his kidneys.”
Fred was hospitalized on March 25th 2009 for the administration of tests.On March 27th, he was told while alone thathe had “tumors and growths.”He was scared and confused and did not understand.His oncologist left town for the next four days to a medicalconference and was not reachable by phone or email.
What was the diagnosis? What were the treatment options? Would he get a pain consult?
Systems Error:More than one bad doctor
We have names. We are not numbers.
This is my husband’smedical record.I was told it would cost73 Cents per pageAnd we would have towait 21 days to get a copy.
“She must not have tried very hard to get the record….”Comparing access to an unpublished book byStephen Kingto accessing theElectronic Medical Recordwhile hospitalized.
“Go After Them, Regina.” April 18, 2009
After waiting for 5 days for a transferto another hospital for a second opinion,We were sent with an out of dateand incomplete medical recordand transfer summary.The new staff spent 6 hours trying tocobble together a current medical recordUsing a telephone and a fax machine.
Facebook: a PHR withPrivacy Issues?In the seven months prior todiagnosis, 10.7% of FredHolliday’s Status PostsRelated aspects of his currentmedical condition…He exhibited all of the most commonsymptoms of Renal Cell Carcinoma… 5And he listed of them on Facebook.
I am trying to talk with Christine Kraft and epatientDave. Why did we get more help and answers from Social Media than from our local hospital ? Within one day were in email contact and then spoke on the phone. By ten o’clock May 4th 2009, I was talking on the phone with Dave’s Oncologist about my husband’s cancer.
The blood transfusion onMay 16 -17, 2009
Going to Hospice.
On May 27th , I met group of amazing folks at a small Health 2.0 meeting.They asked, “ What was the worst thing that happened?”I responded, “Lack of access to the medical record.”
This is thevital clinical informationfrom Fred’s electronic medical record.Presented in the style ofthe Nutrition Facts Label.Then painted on the wall ofPumpernickel’s Deli inWashington, DC.
We fulfilled our final 2008 resolution on June 11th 2009.We moved into a two bedroom apartment so I could care for Fred in home hospice. He died six days later on June 17th, 2009
Painting Advocacy meets Social Media
This is the painting 73 cents. This is the vital patient story, the social history , the sacred heart of Fred’sELECTRONIC MEDICAL RECORD.
On Tuesday, October 20th 2009 we dedicated the mural,“Where do we go from here?”
As e-patient Dave would say: “Give us our dammed data.”
Change can be Scary.
On July 13, 2010 I had the honor of speaking before the assembled at HHS. I presented the patient voice within Meaningful Use.There was another Regina there that dayDoctor Regina Benjamin, Surgeon Generalpresented her very gripping reason she supportedElectronic Medical Records adoption in the united States.
On September 13th 2011,I met Regina once again. This was the launch ofthe Consumer e-Health ProgramThe “I” in HITat the Department of Health and Human Services.
But here is the real meaning ofthe “I” in HIT. The in HIT
There may be set backs onOur way to patient data access.,butwewillprevail.
All over the world, patientsAre demanding their data.They are demanding accessto the data from their doctors,from their hospitals,and from the devicesinside of their bodies.
Why not have CDS (clinical decision support) for patients? If a child’s toy can figure any item in the world in 20 questions, whyCan’t we have CPOE and CDS in every hospital and family practice?
Inside of every EMR there is a patient story,And sometimes it is told by Betty of Bellin Health.
Welcome to the Walking Gallery.Telling the patient story one jacket at a time.
Freddie grows beyond peering througha door crack to walking in a Gallery.
Isaac grows up.He misses his father’s arms.He joins the gallery as an artist.His jacket is named “Feelings.”He is marching in a rally supportingpatient data access.
Standing out and looking different,Can be uncomfortable or frightening.But is often needed for advocacy.You can take a negative and turnit into a POSITVE.
As of July 2012, 155 unique Walkers have joined wearing 170 jackets.The Gallery has representatives on five continents, but the majority ofWalkers reside in the US.One artist creates the majority of the art, but new artists are joining andcurrently make up 14% of content creation.The Gallery is promoted heavily on twitter, facebook and personal blogs.
We currently have 1 walker in Australia. I think we can change that .
Shirley Williams
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