1. The Measure of a Man.A presentation by Regina Holliday
2. Since the beginning of time, we have written on Walls.Sometimes the writing was official notices and history.
3. When I was a childI drew upon the wall.This wall to be exact.
4. When I was a child,I would draw in Church.My mother said that was okay,As long as I would draw the sermon…
5. Patient Reported Data is very important.
6. 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.
7. The Holliday Family Christmas 2007
8. 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
9. Fred was happy with his new job.But he was very tired,He went to the doctor and wasdiagnosed with hypertension.
10. During the months ofJanuary, FebruaryandMarch of 2009,Fred was in constant pain.
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. 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.
13. What was the diagnosis? What were the treatment options? Would he get a pain consult?
14. Systems Error:More than one bad doctor
15. We have names. We are not numbers.
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. “She must not have tried very hard to get the record….”Comparing access to an unpublished book byStephen Kingto accessing theElectronic Medical Recordwhile hospitalized.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. “Go After Them, Regina.” April 18, 2009
19. 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.
20. 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.
21. Facebook: a PHR withPrivacy Issues?In the seven months prior to diagnosis,10.7% of Fred Holliday’s Status postsrelated aspects of his current medicalcondition…He exhibited all of the most common symptoms ofRenal Cell Carcinoma he listed 5 of them on Facebook.
22. Why did we get more help and answers from Social Media than from our local hospital ? 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.I am trying to talk with Christine Kraft and epatientDave.
23. The blood transfusion onMay 16 -17, 2009
24. Going to Hospice.
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. Painting Advocacy meets Social Media
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. On Tuesday, October 20th 2009 we dedicated the mural,“Where do we go from here?”
29. As e-patient Dave would say: “Give us our dammed data.”
30. Change can be Scary.
31. On September 13th 2011,This was the launch of the Consumer e-HealthProgramThe “I” in HITat the Department of Health and Human Services.
32. But here is the real meaning ofthe “I” in HIT. The in HIT
33. There may be set backs onOur way to patient data access.,butwewillprevail.
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. 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?
36. Who taught you how to be a patient?
37. Inside of every EMR there is a patient story,And sometimes it is told by Betty of Bellin Health.
38. Welcome to the Walking Gallery.Telling the patient story one jacket at a time.
39. Freddie grows beyond peering througha door crack to walking in a Gallery.
40. Isaac grows up.He misses his father’s arms.He joins the gallery as an artist.His jacket is named “Feelings.”He is marching in a rally supportingpatient data access.
41. 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.
42. As of October2012, 186 unique Walkers have joined wearing205jackets.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 are joining and currentlymake up 14% of content creation.The Gallery is promoted heavily on twitter, facebook and personal blogs.
43. Let Patients SpeakWe must encourage every committee,sub-committee, and hospital board, to activelyrecruit and include patients in every aspectof the care process from design toimplementation to resolution.Noting about us without us.From the exam room to the board room.
44. What Measures Matter to Patients?What is the differenceinWITH vs. For?