This document discusses issues with the current medical system and ways to improve transparency and patient empowerment. It suggests that patients should be able to access their full medical records easily and at low cost. It also advocates for valuing the patient's story equally with clinical data. The document proposes thinking of solutions in new, child-like ways to help address difficult topics like end of life care and hospice.

1. Stacking The Deck
A presentation by Regina Holliday

2. My
Naked
Quantified
Self

3. What
Open and Transparent
Really means…

4. The game that may not end.

5. If you could only take 4 toys to a desert island,
what would you take?
If you could only bring up 4 concerns
during your Doctor’s appointment, which would you pick?

6. When is a toy more than a toy?
When does our play become a
symptom of a much larger problem?.

7. Adverse
Childhood
Experience
Survey

8. Telling the story changes things.
The way patients are treated reminds me child abuse in the 1980’s.
No one talked about it.

9. Patient Reported Data

10. The Game We Play

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. 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.

15. “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Comparing access to an unpublished book by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.

16. Going to Hospice.

17. Try to get an autopsy… I dare you.
In the United States; hospital autopsy rates of 60% in the 1950s fell to 12% in the early
1990s and less than 5% in nonteaching hospitals.*
Private autopsy services begin at $2,000.00 and are far out of reach of many consumers.
In addition, studies find that there is disagreement between pre and post-mortem diagnoses in almost 30% of cases.

18. What if the patient’s story and clinical data
were equally valued?

20. Who taught you how to be a patient?

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

23. Isaac grows up.
He joins the gallery as an artist.
His jacket is named “Feelings.”
He is marching in a rally supporting
patient data access.

24. Why can’t we ask Hallmark
to make hospice cards?
Would that help us talk
about end of life?

25. Why not think in new and child-like ways?

26. You can take a negative and turn
it into a POSITVE.