Trick or Treat: An Advocate’s Mission to find Clarity and Transparency in Medical Records.

1. Trick or Treat:
An Advocate’s Mission
to find Clarity
and
Transparency
in Medical Records.
By Regina Holliday
Patient Advocate/Artist

2. We
Play-act
the life
we wish
to live.

3. (This is the scariest thing in the world,
to some people…)

4. In 1978, a movie was released that was considered by many the scariest of all time.
In 1981, they attempted to create an even scarier sequel. It was set in a hospital.

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

6. Patient Reported Data is very important.

7. Even a child
can understand
and appreciate
health
Information.

8. 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.

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. 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.

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

16. 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.

17. “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Comparing access to an unpublished book by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.

18. “During this hospital stay, how often was your pain well controlled?”

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.

22. Facebook
as a
Caring Bridge

23. 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.

24. 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.”

25. 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

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

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

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

29. Well, on October 31, 2009
We went Trick or Treating.
Because life goes on.
Sometimes we need to walk
Up to new doors
And ring the bell…
Sometimes we must remember
The bravery of Childhood.

30. A painting for my
Mother-in-law Joan Holliday:
“The Best of Us.”
Inside of everyone
there is a little child.
What would that child
Say about health care?

31. The Bakery Circa 1980
When was the last time you used a
Rotary Dial Phone?
Or was cashiered at a
hand crank cash register?

32. The Doctor’s Office circa 1980
How much has the picture changed at your local Doctor’s office?

33. Patients can complete the story of care
Nurses Progress Notes:
04.18.09 09:00
Look Dick.
See Sally and Tim.
Funny, funny Sally.
Funny, funny Tim.

34. The patient record
makes a lot more
sense if you include
the full picture.

35. When venders talk with Patients,
We realize we share the same vision.

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

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

38. 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?

39. When Venders invite patients to play the game, Everybody WINS.

40. When venders speak with patients,
A simple logo becomes a web
of community engagement
or a game that children play.

41. The Power of
Beacon Communities

42. Change can be Scary.

43. What
really
scares
Us?

44. Standing out and looking different,
Can be uncomfortable or frightening.
But is often needed for advocacy.

45. Welcome to the Walking Gallery.
We bring the Patient Voice. We walk within our costumes and knock upon closed doors.
We ring the bell.

46. 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.

47. 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.

48. But here is the real meaning of
the “I” in HIT.
Isaac at his Doctor’s appointment
with his EHR in his hands.
The in HIT

49. Thank you for helping patients and families access their data.
It means the world to us.