The Eye of the Storm:Patient Centered Care and CollaborationA presentation by Regina Holliday
Thinkingoutsidethe text boxfocusingon the border
Art, balance and the IEP
In 1978, there was a little boy named Freddie who lived in Marylandand a little girl in Oklahoma named Regina.
Patient Reported Data is very important.
Even a childcan understandand appreciatehealthInformation.Both QuantitativeandQualitative.
When the abuse becomes too bad call this number.
1990Reporting to resultsofThe Sapulpa High SchoolWellness Check(I visit the principal’s office again)
14 years later,Fred would meet Regina on stage in a scenic painting class atOklahoma State University.We would talk of Ste...
Fred and I married, worked and played together for many years.Fred continued his schooling and worked as video store clerk...
From 1994 onward,I was working full time in retail sales,but I would try to find time to paint.
I would paintneighborhood murals.I would alsoteach art at a local preschool.I would work in a toy store.
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“She must not have tried very hard to get the record….”Comparing access to an unpublished book byStephen Kingto accessing ...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 transferto another hospital for a second opinion,We were sent with an out of dateand incomple...
This is thevital clinical informationfrom Fred’s electronic medical record.Presented in the style ofthe Nutrition Facts La...
What about the chemotherapy?We were told an order for Sutent had been placed.It did not come. The hospital pharmacy kicked...
I am trying to talk with Christine Kraft and epatient Dave.Within one day were in email contactand then spoke on the phone...
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?”
Change can be Scary.
How about a report card for Hospitals?
On July 13, 2010 I had the honor ofspeaking before the assembled at HHS.I presented the patient voice withinMeaningful Use...
How would youdefineMeaningful Use?
On September 13th 2011,I met Regina once again. This was the launch ofthe Consumer e-Health ProgramThe “I” in HITat the De...
The in HITHere is the real meaning ofthe “I” in HIT.
There may be set backs onOur way to patient data access.,butwewillprevail.
All over the world, patientsAre demanding their data.They are demanding accessto the data from their doctors,from their ho...
Inside of every EMR there is a patient story,And sometimes it is told by Betty of Bellin Health.
Blue Button: More than app for veterans.
The Learning Health Systemand Chaordic OrganizationThe Patient-CenteredOutcomes Research Institute
2 year study at Primary care settings of Beth IsraelDeaconess Medical Center, Geisinger andHarborview90% patients responde...
Prototype Consumer Reporting System for Patient Safety,When the abuse becomes too bad call this number.https://www.federal...
What happens to user experience when designers likeMichael Graves design wheelchairs?
Why not have CDS (clinical decision support) for patients?If a child’s toy can figure any item in the world in 20 question...
Who taught you how to be a patient?
Welcome to the Walking Gallery.Telling the patient story one jacket at a time.
Freddie grows beyond peering througha door crack to walking in a Gallery.
Isaac grows up.He joins the gallery as an artist.His jacket is named “Feelings.”Hemarches in a rally supportingpatient dat...
Standing out and looking different,Can be uncomfortable or frightening.But is often needed for advocacy.You can take a neg...
226 unique Walkers have joined the Walking Gallery wearing 251 jackets.The Gallery has representatives on five continents,...
Why can’t we ask Hallmarkto make hospice cards?Would that help us talkabout end of life?
Welcome to the Gallery. Welcome to the future.- @ReginaHolliday, #TheWalkingGallery
The eye of the storm
The eye of the storm
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The eye of the storm

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The eye of the storm

  1. 1. The Eye of the Storm:Patient Centered Care and CollaborationA presentation by Regina Holliday
  2. 2. Thinkingoutsidethe text boxfocusingon the border
  3. 3. Art, balance and the IEP
  4. 4. In 1978, there was a little boy named Freddie who lived in Marylandand a little girl in Oklahoma named Regina.
  5. 5. Patient Reported Data is very important.
  6. 6. Even a childcan understandand appreciatehealthInformation.Both QuantitativeandQualitative.
  7. 7. When the abuse becomes too bad call this number.
  8. 8. 1990Reporting to resultsofThe Sapulpa High SchoolWellness Check(I visit the principal’s office again)
  9. 9. 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.
  10. 10. 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.
  11. 11. From 1994 onward,I was working full time in retail sales,but I would try to find time to paint.
  12. 12. I would paintneighborhood murals.I would alsoteach art at a local preschool.I would work in a toy store.
  13. 13. The Holliday Family Christmas 2007
  14. 14. 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
  15. 15. Fred was happy with his new job.But he was very tired,He went to the doctor and wasdiagnosed with hypertension.
  16. 16. During the months ofJanuary, February andMarch of 2009,Status Lines…
  17. 17. On Friday March 13th, We went to the ER because Fred was in so much pain .We waited three hours before being sent home.
  18. 18. 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.
  19. 19. What was the diagnosis? What were the treatment options? Would he get a pain consult?
  20. 20. Systems Error:More than one bad doctor
  21. 21. This is my husband’smedical record.I was told it would cost73 Centsper pageAnd we would have towait 21 days to get a copy.
  22. 22. “She must not have tried very hard to get the record….”Comparing access to an unpublished book byStephen Kingto accessing theElectronic Medical Recordwhile hospitalized.
  23. 23. “Go After Them,Regina.”April 18, 2009
  24. 24. After waiting for5days for a transferto another hospital for a second opinion,We were sent with an out of dateand incomplete medical recordand transfer summary.The new staff spent 6hours trying tocobble together a current medical recordUsing a telephone and a fax machine.
  25. 25. This is thevital clinical informationfrom Fred’s electronic medical record.Presented in the style ofthe Nutrition Facts Label.Then painted on the wall ofPumpernickel’s Deli inWashington, DC.
  26. 26. What about the chemotherapy?We were told an order for Sutent had been placed.It did not come. The hospital pharmacy kicked out the orderas it was too expensive.I would have to order it from a specialty pharmacy and havedelivered to our apartment.This painting is “Sutent in a Shadow Box.”It is a mixed media piece of pills & paper.It is priced at cost in homage of theretail price of the pills alone.17 pills $24,285.71
  27. 27. I am trying to talk with Christine Kraft and epatient Dave.Within one day were in email contactand then spoke on the phone.By ten o’clock May 4th 2009, I wastalking on the phone with Dave’sOncologist about my husband’s cancer.Why did we get more help and answers fromSocial Mediathan from our local hospital ?
  28. 28. Going to Hospice.
  29. 29. 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
  30. 30. Painting Advocacy meets Social Media
  31. 31. This is the painting 73 cents.This is the vital patient story, the social history , the sacred heart of Fred’sELECTRONIC MEDICAL RECORD.
  32. 32. On Tuesday, October 20th 2009 we dedicated the mural,“Where do we gofrom here?”
  33. 33. Change can be Scary.
  34. 34. How about a report card for Hospitals?
  35. 35. On July 13, 2010 I had the honor ofspeaking before the assembled at HHS.I presented the patient voice withinMeaningful Use.There was another Regina there that dayDoctor Regina Benjamin, Surgeon Generalpresented her very gripping reason she supportedElectronic Medical Records adoption in the united States.
  36. 36. How would youdefineMeaningful Use?
  37. 37. On September 13th 2011,I met Regina once again. This was the launch ofthe Consumer e-Health ProgramThe “I” in HITat the Department of Health and Human Services.
  38. 38. The in HITHere is the real meaning ofthe “I” in HIT.
  39. 39. There may be set backs onOur way to patient data access.,butwewillprevail.
  40. 40. 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.
  41. 41. Inside of every EMR there is a patient story,And sometimes it is told by Betty of Bellin Health.
  42. 42. Blue Button: More than app for veterans.
  43. 43. The Learning Health Systemand Chaordic OrganizationThe Patient-CenteredOutcomes Research Institute
  44. 44. 2 year study at Primary care settings of Beth IsraelDeaconess Medical Center, Geisinger andHarborview90% patients responded they understood what theyhad read & were not bothered by it.1-2% were concerned/offended by the contents ofthe notes87% of those patients enrolled in this study didcheck the notes.Doctors said the study either only added a modestincrease in work or that it was negligible.80% Patients claimed greater adherence tomedication protocols due to access to the notes.
  45. 45. Prototype Consumer Reporting System for Patient Safety,When the abuse becomes too bad call this number.https://www.federalregister.gov/articles/2013/06/06/2013-13341/agency-information-collection-activities-proposed-collection-comment-request Public Comment Closes July
  46. 46. What happens to user experience when designers likeMichael Graves design wheelchairs?
  47. 47. Why not have CDS (clinical decision support) for patients?If a child’s toy can figure any item in the world in 20 questions, whyCan’t we have CPOE and CDS in every hospital and family practice?
  48. 48. Who taught you how to be a patient?
  49. 49. Welcome to the Walking Gallery.Telling the patient story one jacket at a time.
  50. 50. Freddie grows beyond peering througha door crack to walking in a Gallery.
  51. 51. Isaac grows up.He joins the gallery as an artist.His jacket is named “Feelings.”Hemarches in a rally supportingpatient data access.In this year’s jacket he focusedon diabetes care.
  52. 52. Standing out and looking different,Can be uncomfortable or frightening.But is often needed for advocacy.You can take a negative and turnit into a POSITVE.
  53. 53. 226 unique Walkers have joined the Walking Gallery wearing 251 jackets.The Gallery has representatives on five continents, but the majority of Walkersreside in the US. One artist creates the majority of the art, but new artists arejoining and currently make up 10% of content creation.The Gallery is promoted heavily on twitter, facebook and personal blogs.
  54. 54. Why can’t we ask Hallmarkto make hospice cards?Would that help us talkabout end of life?
  55. 55. Welcome to the Gallery. Welcome to the future.- @ReginaHolliday, #TheWalkingGallery

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