The Eye of the Storm


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A story of patient advocacy

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The Eye of the Storm

  1. 1. The Eye of the Storm: Patient Centered Care and Collaboration A presentation by Regina Holliday
  2. 2. Thinking outside the text box focusing on the border
  3. 3. Art, balance and the IEP
  4. 4. In 1978, there was a little boy named Freddie who lived in Maryland and a little girl in Oklahoma named Regina.
  5. 5. Patient Reported Data is very important.
  6. 6. When the abuse becomes too bad call this number.
  7. 7. 1990 Reporting to results of The Sapulpa High School Wellness Check (I visit the principal’s office again)
  8. 8. 14 years later, Fred would meet Regina on stage in a scenic painting class at Oklahoma State University. We would talk of Stephen King’s Dark Tower. We would fall in love.
  9. 9. You know it is true love when you sell your comic book collection to pay for the wedding.
  10. 10. In 1998 Freddie Holliday was born 4 weeks early at Lawrence Memorial Hospital. He needed to stay in the NICU We we able to stay with him the entire week in the Segebrecht Room.
  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 paint neighborhood murals. I would also teach 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 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
  15. 15. Fred was happy with his new job. But he was very tired, He went to the doctor and was diagnosed with hypertension.
  16. 16. During the months of January, February and March 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 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.
  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’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.
  22. 22. “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.
  23. 23. “Go After Them, Regina.” April 18, 2009
  24. 24. 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 6hours trying to cobble together a current medical record Using a telephone and a fax machine.
  25. 25. 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.
  26. 26. I am trying to talk with Christine Kraft and epatient Dave. 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. Why did we get more help and answers from Social Media than from our local hospital ?
  27. 27. Going to Hospice.
  28. 28. 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
  29. 29. Painting Advocacy meets Social Media
  30. 30. This is the painting 73 cents. This is the vital patient story, the social history , the sacred heart of Fred’s ELECTRONIC MEDICAL RECORD.
  31. 31. On Tuesday, October 20th 2009 we dedicated the mural, “Where do we go from here?”
  32. 32. Change can be Scary.
  33. 33. How about a report card for Hospitals?
  34. 34. How would you define Meaningful Use?
  35. 35. The in HIT Here is the real meaning of the “I” in HIT.
  36. 36. There may be set backs on Our way to patient data access., but we will prevail.
  37. 37. 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.
  38. 38. Inside of every EMR there is a patient story, And sometimes it is told by Betty of Bellin Health.
  39. 39. Blue Button: More than app for veterans.
  40. 40. The Learning Health System and Chaordic Organization The Patient-Centered Outcomes Research Institute
  41. 41. 2 year study at Primary care settings of Beth Israel Deaconess Medical Center, Geisinger and Harborview 90% patients responded they understood what they had read & were not bothered by it. 1-2% were concerned/offended by the contents of the notes 87% of those patients enrolled in this study did check the notes. Doctors said the study either only added a modest increase in work or that it was negligible. 80% Patients claimed greater adherence to medication protocols due to access to the notes.
  42. 42. Prototype Consumer Reporting System for Patient Safety, When the abuse becomes too bad call this number.
  43. 43. What happens to user experience when designers like Michael Graves design wheelchairs?
  44. 44. 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?
  45. 45. Who taught you how to be a patient?
  46. 46. Welcome to the Walking Gallery. Telling the patient story one jacket at a time.
  47. 47. Freddie grows beyond peering through a door crack to walking in a Gallery.
  48. 48. Isaac grows up. He joins the gallery as an artist. His jacket is named “Feelings.” He marches in a rally supporting patient data access. In this year’s jacket he focused on diabetes care.
  49. 49. 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.
  50. 50. 236 unique Walkers have joined the Walking Gallery wearing 263 jackets. The Gallery is promoted heavily on twitter, facebook and personal blogs.
  51. 51. Why can’t we ask Hallmark to make hospice cards? Would that help us talk about end of life?
  52. 52. Welcome to the Gallery. Welcome to the future. - @ReginaHolliday, #TheWalkingGallery