My speech in Maine before the Quality Counts Conference April 4, 2012

1. A Story Before Dying
A presentation by Regina Holliday
for
Maine Quality Counts 2012 Annual Conference –
April 4th
Partnering with Patients: Finding the Bright Spots to Transform Care

2. 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.

3. 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.

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

5. Patient Reported Data is very important.

6. 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.

7. Years past by and we would meet
and 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.

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

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

10. The family picture Christmas 2007

11. 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

12. During the months of
January, February& March,
Fred was in constant pain.
He visited two ER’s
and was sent home.
He visited his Doctor’s office
many times.
He was given pain pills
each time.
He postedhis Facebookstatus
relating to his health.

13. 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 cell phone.

14. 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?

15. Visiting
Hours
When
You
Are
Autistic.

16. Embracing Pain.

17. 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.

18. “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.

19. Systems Error:
Reading while the train roars by.

20. Ambulance Transports=
Minutes of Sunshine

22. A name tag defines us

24. The Internist promised Fred a they
would go on a picnic.
We would take our little children out
to play when this nightmare was over.

26. Sent with an incomplete and out of date
Medical record and transfer summary.

27. 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.

29. Why did we get more help and answers from
Social Media
than from our local hospital ?
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.

30. If this were a tale of Stephen King,
this would be the point he would tell
the 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.

32. Painting Advocacy meets Social Media

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

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

35. “It is the star to every wandering bark…”

36. Finding the Bright Spots in Care

37. At Pew Research
Susannah Fox works on large data
sets that represent population health.

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

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

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

41. 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.

42. 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

43. Reaching the Tower:
This is not the end.
This is a new beginning.