ePatient engagement


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Recent Core Deck focusing a bit more on health literacy.

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ePatient engagement

  1. 1. Patient Engagement:We were here all alonga presentation by Regina Holliday
  2. 2. In 1978, there was a little boy named Freddie who lived in Marylandand a little girl in Oklahoma named Regina.
  3. 3. Patient Reported Data is very important.
  4. 4. 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.
  5. 5. 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.
  6. 6. From 1994 onward,I was working full time in retail sales,but I would try to find time to paint.
  7. 7. The Holliday Family Christmas 2007
  8. 8. 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
  9. 9. Fred was happy with his new job.But he was very tired,He went to the doctor and wasdiagnosed with hypertension.
  10. 10. During the months ofJanuary, February andMarch of 2009,Status Lines…
  11. 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. 12. 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.
  13. 13. What was the diagnosis? What were the treatment options? Would he get a pain consult?
  14. 14. Systems Error:More than one bad doctor
  15. 15. This is my husband’smedical record.I was told it would cost73 Centsper pageAnd we would have towait 21 days to get a copy.
  16. 16. “She must not have tried very hard to get the record….”Comparing access to an unpublished book byStephen Kingto accessing theElectronic Medical Recordwhile hospitalized.
  17. 17. “Go After Them,Regina.”April 18, 2009
  18. 18. 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.
  19. 19. 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.
  20. 20. 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 ?
  21. 21. Going to Hospice.
  22. 22. 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
  23. 23. Painting Advocacy meets Social Media
  24. 24. This is the painting 73 cents.This is the vital patient story, the social history , the sacred heart of Fred’sELECTRONIC MEDICAL RECORD.
  25. 25. On Tuesday, October 20th 2009 we dedicated the mural,“Where do we gofrom here?”
  26. 26. Change can be Scary.
  27. 27. How about a report card for Hospitals?
  28. 28. How would youdefineMeaningful Use?
  29. 29. There may be set backs onOur way to patient data access.,butwewillprevail.
  30. 30. 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.
  31. 31. Inside of every EMR there is a patient story,And sometimes it is told by Betty of Bellin Health.
  32. 32. Blue Button: More than app for veterans.
  33. 33. The Learning Health Systemand Chaordic OrganizationThe Patient-CenteredOutcomes Research Institute
  34. 34. 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.
  35. 35. Consumer Reporting System for Patient Safety, May 2013When the abuse becomes too bad call this number.
  36. 36. What happens to user experience when designers likeMichael Graves design wheelchairs?
  37. 37. 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?
  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. Freddie grows beyond peering througha door crack to walking in a Gallery.
  41. 41. Isaac grows up.He joins the gallery as an artist.His jacket is named “Feelings.”He is marching in a rally supportingpatient data access.
  42. 42. 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.
  43. 43. 210 unique Walkers have joined the Walking Gallery wearing 232 jackets.The Gallery is promoted heavily on twitter, facebook and personal blogs.
  44. 44. Why can’t we ask Hallmarkto make hospice cards?Would that help us talkabout end of life?
  45. 45. Welcome to the Gallery. Welcome to the future.- @ReginaHolliday, #TheWalkingGallery