a presentation byRegina HollidayJust as I am:Making the Case for Data Access
Thinkingoutsidethe text boxfocusingon the border
There was a little boy named Freddie who lived in Marylandand a little girl in Oklahoma named Regina.
Patient Reported Data
When the abuse becomes too bad call this number.
We met in a scenic painting class atOklahoma State University.We would talk of Stephen King’s Dark Tower.We would fall in ...
Fred and I married, worked and played together for many years.Fred continued his schooling and worked as video store clerk...
The Holliday Family Christmas 2007
Everything we ever wanted…Resolutions January 2008:1. Get Medical Insurance for the whole family2. Get little Freddie into...
Fred was happy with his new job.But he was very tired,He went to the doctor and wasdiagnosed with hypertension.
During the months ofJanuary, February andMarch of 2009,Status Lines…
On Friday March 13th, We went to the ER because Fred was in so much pain .We waited three hours before being sent home.
Fred was hospitalized on March 25th 2009for the administration of tests.On March 27th, he was told while alone thathe had ...
What was the diagnosis? What were the treatment options? Would he get a pain consult?
Systems Error:More than one bad doctor
This is my husband’smedical record.I was told it would cost73 Centsper pageAnd we would have towait 21 days to get a copy.
“She must not have tried very hard to get the record….”Comparing access to an unpublished book byStephen Kingto accessing ...
“Go After Them,Regina.”April 18, 2009
After waiting for5days for a transfer, we weresent with an out of date and incomplete medicalrecord and transfer summary.T...
“You’re going to need abigger binder…”
This is thevital clinical informationfrom Fred’s electronic medical record.Painted on the wall ofPumpernickel’s Deli inWas...
I am trying to talk with Christine Kraft and epatient Dave.Why did we get more help and answers fromSocial Mediathan from ...
You never really know which picture will be your last.
The blood transfusion.
Going to Hospice.
We fulfilled our final 2008 resolution on June 11th 2009.We moved into a two bedroom apartment so I could care for Fred in...
Painting Advocacy meets Social Media
This is the painting 73 cents.This is the vital patient story, the social history , the sacred heart of Fred’sELECTRONIC M...
On Tuesday, October 20th 2009 we dedicated the mural,“Where do we gofrom here?”
How about a report card for Hospitals?
How would youdefineMeaningful Use?
There may be set backs onOur way to patient data access.,butwewillprevail.
2 year study at Primary care settings of BethIsrael Deaconess Medical Center, Geisingerand Harborview90% patients responde...
All over the world, patientsAre demanding their data.They are demanding accessto the data from their doctors,from their ho...
What part shall you play in thisOrchestra?
Now our data isMOVING.
Consumer Reporting System for Patient Safety,When the abuse becomes too bad call this number.
Who taught you how to be a patient?
Welcome to the Walking Gallery.Telling the patient story one jacket at a time.
Over 200unique Walkers have joinedwearing 200 plus jackets.The Walking Gallery is promoted heavilyusing the free tools ofs...
You can take a negative and turnit into a POSITVE.
Just as I am
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Just as I am

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Making the Case for data access to the Electronic Medical record.

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Just as I am

  1. 1. a presentation byRegina HollidayJust as I am:Making the Case for Data Access
  2. 2. Thinkingoutsidethe text boxfocusingon the border
  3. 3. There was a little boy named Freddie who lived in Marylandand a little girl in Oklahoma named Regina.
  4. 4. Patient Reported Data
  5. 5. When the abuse becomes too bad call this number.
  6. 6. We met in a scenic painting class atOklahoma State University.We would talk of Stephen King’s Dark Tower.We would fall in love.
  7. 7. Fred and I married, worked and played together for many years.Fred continued his schooling and worked as video store clerk.In 2005,Fred would get a PhD in film studiesand would write his dissertationAbout “Buffy the Vampire Slayer.”In 1998,Freddie III joined the family gamefollowed bythe littlest player Isaac in 2006.
  8. 8. The Holliday Family Christmas 2007
  9. 9. Everything we ever wanted…Resolutions January 2008:1. Get Medical Insurance for the whole family2. Get little Freddie into a special needs school3. Fred gets a job in his field4. Spend more time together as a family5. Get a two bedroom apartmentFreddie’sIEP Binder
  10. 10. Fred was happy with his new job.But he was very tired,He went to the doctor and wasdiagnosed with hypertension.
  11. 11. During the months ofJanuary, February andMarch of 2009,Status Lines…
  12. 12. On Friday March 13th, We went to the ER because Fred was in so much pain .We waited three hours before being sent home.
  13. 13. Fred was hospitalized on March 25th 2009for the administration of tests.On March 27th, he was told while alone thathe had “tumors and growths.”He was scared and confused and did not understand.His oncologist left town for the next four days to a medicalconference and was not reachable by phone or email.
  14. 14. What was the diagnosis? What were the treatment options? Would he get a pain consult?
  15. 15. Systems Error:More than one bad doctor
  16. 16. This is my husband’smedical record.I was told it would cost73 Centsper pageAnd we would have towait 21 days to get a copy.
  17. 17. “She must not have tried very hard to get the record….”Comparing access to an unpublished book byStephen Kingto accessing theElectronic Medical Recordwhile hospitalized.
  18. 18. “Go After Them,Regina.”April 18, 2009
  19. 19. After waiting for5days for a transfer, we weresent with an out of date and incomplete medicalrecord and transfer summary.The new staff spent 6hours trying to cobbletogether a record using a phone and a fax machine.
  20. 20. “You’re going to need abigger binder…”
  21. 21. This is thevital clinical informationfrom Fred’s electronic medical record.Painted on the wall ofPumpernickel’s Deli inWashington, DC.
  22. 22. I am trying to talk with Christine Kraft and epatient Dave.Why did we get more help and answers fromSocial Mediathan from our local hospital ?
  23. 23. You never really know which picture will be your last.
  24. 24. The blood transfusion.
  25. 25. Going to Hospice.
  26. 26. 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
  27. 27. Painting Advocacy meets Social Media
  28. 28. This is the painting 73 cents.This is the vital patient story, the social history , the sacred heart of Fred’sELECTRONIC MEDICAL RECORD.
  29. 29. On Tuesday, October 20th 2009 we dedicated the mural,“Where do we gofrom here?”
  30. 30. How about a report card for Hospitals?
  31. 31. How would youdefineMeaningful Use?
  32. 32. There may be set backs onOur way to patient data access.,butwewillprevail.
  33. 33. 2 year study at Primary care settings of BethIsrael Deaconess Medical Center, Geisingerand Harborview90% patients responded they understoodwhat they had read & were not bothered by it.1-2% were concerned/offended by thecontents of the notes87% of those patients enrolled in this studydid check the notes.Doctors said the study either only added amodest increase in work or that it wasnegligible.80% Patients claimed greater adherence tomedication protocols due to access to thenotes.
  34. 34. All over the world, patientsAre demanding their data.They are demanding accessto the data from their doctors,from their hospitals,and from the devicesinside of their bodies.
  35. 35. What part shall you play in thisOrchestra?
  36. 36. Now our data isMOVING.
  37. 37. Consumer Reporting System for Patient Safety,When the abuse becomes too bad call this number.
  38. 38. Who taught you how to be a patient?
  39. 39. Welcome to the Walking Gallery.Telling the patient story one jacket at a time.
  40. 40. Over 200unique Walkers have joinedwearing 200 plus jackets.The Walking Gallery is promoted heavilyusing the free tools ofsocial media.
  41. 41. You can take a negative and turnit into a POSITVE.

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