A Story Before Dying

A presentation by Regina Hollidayfor Maine Quality Counts 2012 Annual Conference – April 4th

Partnering with Patients: Finding the Bright Spots to Transform Care

Once upon a time there was a boy named Fred who lived in Maryland.

He was the only son.

He was loved deeply.

His mother read him stories.

His father told him tales.

He fell in love with books.

He did well in school.

Once upon a time there was a girl named Regina who lived in Oklahoma.

She was the middle child.

Her siblings loved her deeply.

Her mother read her stories.

Her father beat her.

She could not read.

She failed first grade.

Though Fred and I were separated by many miles. We were connected by stories.

Patient Reported Data is very important.

The little girl Regina grew older, she could now read and see with glasses.

She was still beaten.

The boy Fred grew older,and loved books and saw with crystal clarity

his house burn to the ground.

Life was hard,but they both found comfort in

story.

Years past by and we would meetand talk of stories.

Fred he loved the stories of Stephen King, but most of all

The Dark Tower.

So we fell in love painting all night, while talking Stephen King.

Fred and Regina married in 1993. We had two wonderful sons. Freddie in 1998 and Isaac in 2006.

From 1994 through 2008,I was working full time in retail sales, but I would try to find time to paint.

The family picture 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

During the months of

January, February & March, Fred was in constant pain. He visited two ER’sand was sent home.

He visited his Doctor’s officemany times.

He was given pain pills each time.

He posted his Facebook status relating to his health.

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 cell phone.

I asked everyone involved in Fred’s care about information on his case. What was the diagnosis? What were the treatment options? Would he get a pain consult?

Visiting

Hours

When

You

Are

Autistic.

Embracing Pain.

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.

Systems Error:

Reading while the train roars by.

Ambulance Transports=Minutes of Sunshine

A name tag defines us

The Internist promised Fred a they would go on a picnic.

We would take our little children outto play when this nightmare was over.

Sent with an incomplete and out of dateMedical record and transfer summary.

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.

I got on Twitter on May 3rd to find Christine Kraft and e-Patient Dave to talk to them about kidney cancer.

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 ?

If this were a tale of Stephen King, this would be the point he would tellthe gentle reader:

Close the book and just pretend.

Pretend that Fred got better,that Freddie and Isaac have a father who plays with them.

Pretend we all took that picnic by the path of the beam.

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?”

“It is the star to every wandering bark…”

Finding the Bright Spots in Care

At Pew ResearchSusannah Fox works on large datasets that represent population health.

At Bellin Health in Wisconsin there is and EMR named Betty.

Inside Sharp Coronado Healthcare, there are open medical records reviewed by patients With the ability for patients to amend…

Taking a Stand

“Dark and difficult times lie ahead. Soon we must all face the choice betweenWhat is right and what is easy.” –Harry Potter and the Goblet of Fire by J.K. Rowling

Let Patients Speak

We must encourage every committee, conference and hospital board, to actively recruit and include patients in every aspect of the care process from design to implementation to resolution.

Invite patients and you will include artists,poets and writers in creating health policy.

How would an artist, a speaker or a poet promote Patient-centered Care?

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 become legitimized by an audience, not a storyteller. –Christine Kraft

Reaching the Tower:

This is not the end.

This is a new beginning.