The Writing on the Wall A presentation by Regina Holliday

Everything I needed to know about being a patient,

I learned in

elementary school.

In 1978, there was a little boy named Freddie who lived in Maryland and 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 at Oklahoma State University.

We would talk of Stephen King’s Dark Tower.

We would fall in love.

Fred and I married, worked and played together for many years.

I worked in a toy store.

Fred continued his schooling and worked as video store clerk.

In 2005, Fred would get a PhD in film studiesand 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 paint

neighborhood murals. I would also

Teach 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’sIEP Binder

Fred was happy with his new job.

But he was very tired,

He went to the doctor and was diagnosed with hypertension.

During the months of

January, 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 Play

Regina: “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 medical conference 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’s medical record.

I was told it would cost

73 Cents

per page

And we would have to wait 21 days to get a copy.

“She must not have tried very hard to get the record….”Comparing access to an unpublished book by

Stephen King to accessing the

Electronic Medical Record while hospitalized.

“Go After Them, Regina.” April 18, 2009

After waiting for 5 days for a transfer

to another hospital for a second opinion,

We were sent with an out of date and incomplete medical record and transfer summary.

The new staff spent 6 hours trying to

cobble together a current medical record Using a telephone and a fax machine.

Facebook: a PHR with Privacy Issues?

In the seven months prior to diagnosis, 10.7% of Fred Holliday’s Status PostsRelated aspects of his current medical condition…

He exhibited all of the most common symptoms of Renal Cell Carcinoma…

And he listed 5of them on

Facebook.

I am trying to talk with Christine Kraft and epatient Dave.

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.

Why did we get more help and answers from

Social Media than from our local hospital ?

The blood transfusion on May 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 the

vital clinical informationfrom Fred’s electronic medical record.

Presented in the style of the Nutrition Facts Label.

Then painted on the wall ofPumpernickel’s Deli in Washington, 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’s

ELECTRONIC 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 day

Doctor Regina Benjamin, Surgeon General presented her very gripping reason she supported Electronic Medical Records adoption in the united States.

On September 13th 2011, I met Regina once again. This was the launch of the Consumer e-Health Program

The “I” in HIT at the Department of Health and Human Services.

The in HIT

But here is the real meaning ofthe “I” in HIT.

There may be set backs on Our way to patient data access.,

but we will prevail.

All over the world, patients Are 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, why

Can’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 through a 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 supporting patient data access.

Standing out and looking different,

Can be uncomfortable or frightening.

But is often needed for advocacy.

You can take a negative and turn

it 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 of Walkers reside in the US.

One artist creates the majority of the art, but new artists are joining and currently 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 .

Welcome to the Gallery. Welcome to the future.