The Writing on the Wall

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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 atOklahoma State University.

...

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

Iworked in a toy store.

Fred continued his schooling and w...

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 F...

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...

Fred was hospitalized on March 25th 2009
for the administration of tests.

On March 27th, he was told while alone that...

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 ...

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Comparing access to an unpublished book by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

“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We were sent with an out of date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 ...

Facebook: a PHR with
Privacy Issues?
In the seven months prior to
diagnosis, 10.7% of Fred
Holliday’s Status Posts
Related...

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

Why did we get more help and answers from

Soci...

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 hap...

This is the
vital clinical information
from Fred’s electronic medical record.

Presented in the style of
the Nutrition Fac...

We fulfilled our final 2008 resolution on June 11th 2009.

We moved into a two bedroom apartment so I could care for Fred ...

Painting Advocacy meets Social Media

This is the painting 73 cents.

This is the vital patient story, the social history , the ...

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 ...

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

The “I” in HIT
at t...

But here is the real meaning of
the “I” in HIT.
The 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 access
to the data from their doctors,
from the...

Why not have CDS (clinical decision support) for patients?
If a child’s toy can figure any it...

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 mar...

Standing out and looking different,

Can be uncomfortable or frightening.

But is often needed for advocacy.

You can take...

As of July 2012, 155 unique Walkers have joined wearing 170 jackets.

The Gallery has representatives on five continents, ...

We currently have 1 walker in Australia. I think we can change that .

Welcome to the Gallery. Welcome to the future.

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