Leading From the Future:From Doctor Strangelove to Doctor Who By Regina Holliday

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.

You know it is true love when you sell your comic book collection to pay for the wedding.

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

In the fall of 2008, Fred becomes a professor at American University And the family rediscovers the wonder of Doctor Who.

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.

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?

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“She must not have tried very hard to get the record….”Comparing access to an unpublished book by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We were sent with an out of date and incomplete medical record and transfer summary.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.

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 ?

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.”

Fred died on June 17th, 2009

On June 23rd I began to paint the mural “73 Cents.”

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?”

Change can be Scary.

The Bakery Circa 1980

When was the last time you used aRotary Dial Phone?

Or was cashiered at a hand crank cash register?

The Doctor’s Office circa 1980

How much has the picture changed at your local Doctor’s office?

Which future will he lead?

Would HCAHPS scores matter more if they were presented as a child’s report card?

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 visited his Doctor weekly for a two month period prior to hospitalization.

He went to two different ER’s in the two months before diagnosis.

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

And he listed 5 of them on Facebook.

If a child’s toy can figure any item in the world in 20 questions, why can’t we have a Star Trek medical tricorder?

The in HIT

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

Isaac at his Doctor’s appointmentwith his EHR in his hands.

Inside of every EMR there is a patient story,And sometimes it is told by Betty of Bellin Health.

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 at the Department of Health and Human Services.

A place for speakers and seekers to find each other.

SpeakerLink.org

Welcome to the Walking Gallery.

“We are all stories in the end.”-The Doctor, from Doctor Who