This document summarizes Regina Holliday's presentation about her experience with her husband Fred's medical records and treatment. It describes how Fred was initially misdiagnosed and sent home in pain multiple times. After he was correctly diagnosed with renal cell carcinoma, Regina had great difficulty accessing Fred's medical records. She advocated for greater patient access to medical data. This led Regina to create artworks telling Fred's story and advocating for patient rights, including a mural and a "walking gallery" of painted jackets. Her efforts helped bring about changes to promote patient access to their own medical information.

1. The
Core of
the
Matter
A presentation
by Regina
Holliday

2. Everything I needed to know
about being a patient,
I learned in
elementary school.

3. In 1978, there was a little boy named Freddie who lived in Maryland
and a little girl in Oklahoma named Regina.

4. Patient Reported Data is very important.

5. 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.

6. 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 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.

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

8. I would paint
neighborhood murals.
I would also
Teach art at a local preschool.

9. The Holliday Family Christmas 2007

10. 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

11. Fred was happy with his new job.
But he was very tired,
He went to the doctor and was
diagnosed with hypertension.

12. During the months of
January, February and March of 2009,
Fred was in constant pain.

13. On Friday March 13th, We went to the ER because Fred was in so much pain .
We waited three hours before being sent home.

14. 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.”

15. Fred was hospitalized on March 25th 2009
for the administration of tests.
On March 27th, he was told while alone that
he 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.

16. What was the diagnosis? What were the treatment options? Would he get a pain consult?

17. Systems Error:
More than one bad doctor

18. We have names. We are not numbers.

20. 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.

21. “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.

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

23. 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.

24. This is the
vital clinical information
from Fred’s electronic medical record.
Presented in the style of
the Nutrition Facts Label.
Then painted on the wall of
Pumpernickel’s Deli in
Washington, DC.

26. Facebook: a PHR with
Privacy Issues?
In the seven months prior to
diagnosis, 10.7% of Fred
Holliday’s Status Posts
Related aspects of his current
medical condition…
He exhibited all of the most common
symptoms of Renal Cell Carcinoma…
And he listed
Facebook.
5 of them on

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

28. The blood transfusion on
May 16 -17, 2009

29. Going to Hospice.

30. 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

31. Painting Advocacy meets Social Media

32. This is the painting 73 cents.
This is the vital patient story, the social history , the sacred heart of Fred’s
ELECTRONIC MEDICAL RECORD.

33. On Tuesday, October 20th 2009 we dedicated the mural,
“Where do we go
from here?”

34. 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.”

35. As e-patient Dave would say: “Give us our dammed data.”

36. Change can be Scary.

37. 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.

38. 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.

39. But here is the real meaning of
the “I” in HIT.
The in HIT

40. There may be set backs on
Our way to patient data access.,
but
we
will
prevail.

41. All over the world, patients
Are demanding their data.
They are demanding access
to the data from their doctors,
from their hospitals,
and from the devices
inside of their bodies.

42. 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?

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

44. Welcome to the Walking Gallery.
Telling the patient story one jacket at a time.

46. Freddie grows beyond peering through
a door crack to walking in a Gallery.

47. 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.

48. 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.

49. As ofOctober2012, 185 unique Walkers have joined wearing203jackets.
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.

50. We each walk inspired by our core mission centered on the patient story.

51. Welcome to the Gallery. Welcome to the future.