1. The Measure of a Man.
A presentation by Regina Holliday

2. Since the beginning of time, we have written on Walls.
Sometimes the writing was official notices and history.

3. When I was a child
I drew upon the wall.
This wall to be exact.

4. When I was a child,
I would draw in Church.
My mother said that was okay,
As long as I would draw the sermon…

5. Patient Reported Data is very important.

6. 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.

7. The Holliday Family Christmas 2007

8. 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

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

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

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

12. 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.

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

14. Systems Error:
More than one bad doctor

15. We have names. We are not numbers.

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Comparing access to an unpublished book by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. “Go After Them,
Regina.”
April 18, 2009

20. 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We were sent with an out of date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.

21. 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.

23. 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
he listed 5 of them on Facebook.

24. 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.
I am trying to talk with Christine Kraft and epatient
Dave.

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

26. Going to Hospice.

27. 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

28. Painting Advocacy meets Social Media

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

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

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

32. Change can be Scary.

33. On September 13th 2011,
This was the launch of the Consumer e-Health
Program
The “I” in HIT
at the Department of Health and Human Services.

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

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

36. 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.

37. 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?

38. Who taught you how to be a patient?

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

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

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

43. 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.

44. 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.

45. As of October2012, 186 unique Walkers have joined wearing205jackets.
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.

46. Let Patients Speak
We must encourage every committee,
sub-committee, and hospital board, to actively
recruit and include patients in every aspect
of the care process from design to
implementation to resolution.
Noting about us without us.
From the exam room to the board room.

47. What Measures Matter to Patients?
What is the difference
in
WITH vs. For?

48. Welcome to the future.