Trick or Treat


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Trick or Treat:

An Advocate’s Mission to find Clarity and
Transparency in Medical Records.

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Trick or Treat

  1. 1. Trick or Treat:An Advocate’s Missionto find ClarityandTransparencyin Medical Records.By Regina HollidayPatient Advocate/Artist
  2. 2. WePlay-actthe lifewe wishto live.
  3. 3. (This is the scariest thing in the world,to some people…)
  4. 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. 5. In 1978, there was a little boy named Freddie who lived in Marylandand a little girl in Oklahoma named Regina.
  6. 6. Patient Reported Data is very important.
  7. 7. Even a childcan understandand appreciatehealthInformation.
  8. 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. 9. The Holliday Family Christmas 2007
  10. 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. 11. Fred was happy with his new job.But he was very tired,He went to the doctor and wasdiagnosed with hypertension.
  12. 12. During the months ofJanuary, February and March of 2009,Fred was in constant pain.
  13. 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. 14. Fred was hospitalized on March 25th 2009 for 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.
  15. 15. What was the diagnosis? What were the treatment options? Would he get a pain consult?
  16. 16. This is my husband’smedical record.I was told it would cost73 Cents per 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 “She must not have tried very hard to get the record….”Comparing access to an unpublished book byStephen Kingto accessing theElectronic Medical Recordwhile hospitalized.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. “During this hospital stay, how often was your pain well controlled?”
  19. 19. “Go After Them, Regina.” April 18, 2009
  20. 20. After waiting for 5 days 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 6 hours trying tocobble together a current medical recordUsing a telephone and a fax machine.
  21. 21. 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.
  22. 22. Facebookas aCaring Bridge
  23. 23. Why did we get more help and answers fromSocial 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. 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. 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. 26. Painting Advocacy meets Social MediaStreet art is truly the first global art movement fueled by the Internet. –Marc and Sara Schiller, Wooster Collective, 2010
  27. 27. This is the painting 73 cents. This is the vital patient story, the social history , the sacred heart of Fred’sELECTRONIC MEDICAL RECORD.
  28. 28. On Tuesday, October 20th 2009 we dedicated the mural,“Where do we go from here?”
  29. 29. Well, on October 31, 2009We went Trick or Treating.Because life goes on.Sometimes we need to walkUp to new doorsAnd ring the bell…Sometimes we must rememberThe bravery of Childhood.
  30. 30. A painting for myMother-in-law Joan Holliday:“The Best of Us.”Inside of everyonethere is a little child.What would that childSay about health care?
  31. 31. The Bakery Circa 1980When was the last time you used aRotary Dial Phone?Or was cashiered at ahand crank cash register?
  32. 32. The Doctor’s Office circa 1980How much has the picture changed at your local Doctor’s office?
  33. 33. Patients can complete the story of careNurses Progress Notes:04.18.09 09:00Look Dick.See Sally and Tim.Funny, funny Sally.Funny, funny Tim.
  34. 34. The patient recordmakes a lot moresense if you includethe full picture.
  35. 35. When venders talk with Patients,We realize we share the same vision.
  36. 36. Inside of every EMR there is a patient story,And sometimes it is told by Betty.
  37. 37. Inside Sharp Coronado Healthcare, there are open medical records reviewed by patientsWith the ability for patients to amend…
  38. 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, whyCan’t we have CPOE and CDS in every hospital and family practice?
  39. 39. When Venders invite patients to play the game, Everybody WINS.
  40. 40. When venders speak with patients,A simple logo becomes a webof community engagementor a game that children play.
  41. 41. The Power ofBeacon Communities
  42. 42. Change can be Scary.
  43. 43. Whatreally scares Us?
  44. 44. Standing out and looking different,Can be uncomfortable or frightening.But is often needed for advocacy.
  45. 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. 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 dayDoctor Regina Benjamin, Surgeon Generalpresented her very gripping reason she supportedElectronic Medical Records adoption in the united States.
  47. 47. 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.
  48. 48. But here is the real meaning ofthe “I” in HIT.Isaac at his Doctor’s appointmentwith his EHR in his hands. The in HIT
  49. 49. Thank you for helping patients and families access their data. It means the world to us.