Speech before Linkage.

1. Links in a Chain of Hope
Presented by -Regina Holliday

2. “Anybody can look at a pretty girl and
see a pretty girl.
An artist can look at a pretty girl and see
the old woman she will become.
A better artist can look at an old woman
and see the pretty girl that she used to
be.
But a great artist
-a master-
and that is what Auguste Rodin was-
can look at an old woman,
portray her exactly as she is...and force
the viewer to see the pretty girl she used
to be...”
- Robert A Heinlein, Stranger in a
Strange Land

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. What is your favorite story?
Mine is Mother Hulda, and it has helped define my life
But my husband loved Buffy the Vampire Slayer,
and loved it so much that he wrote his dissertation on it.
He the loved Dark Tower
so much that he died in its shadow.
Combined these stories helped define us both.
They taught us the power of the Long Story.

6. “So they were married,
and
lived happily ever after.”
The Holliday Family
Christmas 2007

7. 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

8. During the months of
January, February and March of 2009,
Fred was in constant pain.
He visited two Emergency Departments
and was sent home.
He visited his Doctor’s office
many times.
He was given pain pills each time.
Often he posted a Facebook status relating to his health

9. 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.

10. 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?

11. 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.

12. “She must have not
tried
very hard to
get the record…..”
Getting a copy of an
unpublished
book
by
Stephen King
compared
to
patient access
to
EMR
while hospitalized.
12

13. I eventually got a copy of Fred’s record and it was instrumental in guiding Fred’s care.
I used this information to create an easy to understand “face-sheet.”
Then,
I painted it on a wall
in Pumpernickel’s
Deli
in Washington, DC
for all of our
neighbors to see…

14. Next, my new friends in the world of Health 2.0 began blogging.

16. 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.

17. Facebook
as a Caring Bridge
I joined Facebook on
September 14, 2008
in order to organize the our son’s
birthday party.
On March 25th 2009 I had 46 friends
and had posted 67 status lines.
In the months during Fred’s
hospitalization,
I would useFacebookas an
information clearing-house.
Hundreds of friends and family would
log on in order to check Fred’s
medical status.

18. 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

19. Painting Advocacy meets
Social Media
Street art is truly the first global art movement fuelled by the Internet.
–Marc and Sara Schiller, Wooster Collective, 2010

20. “Shouldn’t Art stick to what it does best- the delivery of pleasure?
And forget about being a Paintbrush warrior.
Or, is it when the bombs are dropping we find out what art is really for?”
-Power of Art by Simon Schama
I painted 73 Cents from June 23rd to September 30th 2009. It is still there today, at 5001
Connecticut Ave. in Washington, DC. It is a monument to Fred and patients everywhere.
And just like the internet,
it advocates 24 hours a day
and you cannot tell a wall to shut up.

21. “Where
do we go
from here?”

22. How telling the story changes things.
How would the child in me change things?
The way patients are treated reminds me child abuse in the 1980’s.
No one talked about it.
Then we heard of Adam Walsh and saw faces on milk cartons.

23. We must give patients and caregivers Permission
to
tell their story.
And must help provide platforms to spread their tale.

24. How would a toy store clerk promote better care for patients?
Compare POS (point of sale) system adoption rates to EMR (electronic medical records)
adoption rates, and and ask what are we waiting for?
Why not have CDS (clinical decision support) for patients?
The 20Q Ball is a toy that combines a dictionary, an AI interface and a mathematical algorithm.
It plays 20 questions with you. Why not have this kind of tool for diagnostic support as patients wait?
Expect good customer service in medical environments.
There is no excuse for poor eye contact, lack of proper greeting and poor communication in health.

25. How would a mother of a special needs
child create positive change in patient care?
Demand that the level of family inclusion that is part of
the IEP process become the norm in medical settings.
Use the right to patient data access within Meaningful Use,
like a parent uses the right to records access provided by
the Freedom of Information Act.
Support tools to overcome “face blindness.”
Help people, autistic or not, to recognize faces and facial
expressions, including pain.

26. Caring for the Caregiver:
Not all Rainbows and Butterflies

27. Sometimes there is nothing more that can be done.

28. Sometimes
All
We
Can
Do
Is
Dance
And
Rejoice.

29. How would an artist, a speaker or a poet promote Patient-centered Care?
The more stickers that are out there the more important it seems. The more important it seems, the more people want to
know what it is. The more they ask they ask each other. It gains real power from perceived power. -Shepard Fairey

30. What would you do to change things?
What would you do
as a wife or mother, a sister or brother,
a co-worker or friend
to change things... for them?