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Painting the Picture


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Painting the Picture

  1. 1. Painting the Picture: The Patient’s Perspective<br />Painted and Presented by Regina Holliday<br />
  2. 2. Where does a story begin <br /> and where does it end?<br /> PhD<br /> Father<br /> Husband<br /> Professor of Film<br /> Video Clerk<br /> Writer<br /> Son<br />Regina Sue McCanless<br />Wife<br />Mother<br />Daughter<br />Sales Clerk<br />Art Teacher<br />Caregiver<br />Widow<br />Artist<br />Poet<br />Frederick Allen Holliday II, PhD<br />
  3. 3. In 1978, there was a little boy named Freddie <br /> who lived in Maryland.<br />And many miles away in Oklahoma, <br /> lived a little girl named Regina.<br />And though miles would separate them,<br />Stories would connect them.<br />
  4. 4. 14 years later, <br />Fred would meet Regina on stage in a scenic painting class atOklahoma State University. <br />We would talk of Stephen King’s Dark Tower.<br />We would fall in love.<br />
  5. 5. Tides and tears,<br />days and years,<br />And new characters would enter <br />Our personal story.<br />
  6. 6. Everything we ever wanted…<br /> Resolutions January 2008:<br />1. Get Medical Insurance for the whole family<br /> 2. Get little Freddie into a special needs school<br /> 3. Fred gets a job in his field<br /> 4. Spend more time together as a family<br /> 5. Get a two bedroom apartment<br />Freddie’s<br />IEP Binder<br />
  7. 7. Fred was happy with his new job.<br />But he was very tired,<br />He went to the doctor and was diagnosed with hypertension.<br />
  8. 8. During the months of<br />January, February and March of 2009, <br />Fred was in constant pain.<br />He visited two Emergency Departments<br />and was sent home.<br />He visited his Doctor’s office<br />many times.<br />He was given pain pills each time.<br />Often he posted a Facebook status relating to his health<br />
  9. 9. On Friday March 13th, We went to the ER because Fred was in so much pain .<br />The waiting room was filled with stained glass windows and lovely blue couches.<br />And Daddy waited, Mommy waited, Freddie waited and Isaac waited.<br />And after 3 hours of waiting,<br />they sent us home with pain medication.<br />
  10. 10. Fred was hospitalized on March 25th 2009 <br />for the administration of tests.<br />On March 27th, he was told while alone that<br />he had “tumors and growths.”<br />He was scared and confused and did not understand.<br />His oncologist left town for the next four days to a medical <br />conference and was not reachable by cell phone. <br />
  11. 11. I asked everyone involved in Fred’s care about information on his case. <br />What was the diagnosis? What were the treatment options? Would he get a pain consult?<br />For asking questions, Fred’s oncologist called me “Little Miss A-type personality.”<br />
  12. 12. This is my husband’s medical record.<br />I was told it would cost <br />73 Cents<br /> per page <br />And we would have to wait 21 days to get a copy.<br />
  13. 13. “She must not have tried very hard to get the record….”<br />Comparing access to an unpublished book by Stephen King <br />to accessing the <br />Electronic Medical Record while hospitalized. <br />
  14. 14. “During this hospital stay, how often was your pain well controlled?”<br />
  15. 15. After waiting for5days for a transfer<br />to another hospital for a second opinion,<br />they were sent with an out of date <br />and incomplete medical record <br />and transfer summary.<br />The new staff spent 6 hours trying to <br />cobble together a current medical record <br />Using a telephone and a fax machine. <br />
  16. 16. This is the <br />vital clinical information<br />from Fred’s electronic medical record.<br />Presented in the style of <br />the Nutrition Facts Label.<br />Then painted on the wall of<br />Pumpernickel’s Deli in <br />Washington, DC.<br />
  17. 17. Why did we get more help and answers from <br />Social Media <br /> than from our local hospital ?<br />I got on Twitter on May 3rd to find Christine Kraft and e-Patient Dave to talk to them about kidney cancer.<br />Within one day were in email contact and then spoke on the phone.<br />By ten o’clock May 4th 2009, I was talking on the phone with Dave’s Oncologist about my husband’s cancer.<br />
  18. 18. Facebook<br />as a Caring Bridge<br />
  19. 19. We fulfilled our final 2008 resolution on June 11th 2009.<br />We moved into a two bedroom apartment so I could care for Fred in home hospice.<br /> He died six days later on June 17th, 2009<br />
  20. 20. Painting Advocacy meets <br />Social Media<br />Street art is truly the first global art movement fuelled by the Internet. <br /> –Marc and Sara Schiller, Wooster Collective, 2010<br />
  21. 21. This is the painting 73 cents. <br /> This is the vital patient story, the social history , the sacred heart of Fred’s<br />ELECTRONIC MEDICAL RECORD.<br />
  22. 22. On Tuesday, October 20th 2009<br />We dedicated the Mural while singing <br />songs from Buffy the Vampire Slayer<br />Musical “Once More With Feeling.” <br />When ended the night singing our question,<br />“Where <br /> do we go <br /> from here?”<br />
  23. 23. The world of HCAHPS meets the little girl in me. <br />
  24. 24. Welcome to the Walking Gallery.<br />We bring the Patient Voice. <br />We bring new eyes and new vision.<br />We walk and spread the word.<br />
  25. 25. I am little Miss A-type personality…<br />
  26. 26. And children, once silent, can march within a movement.<br />
  27. 27. Isaac at his Doctor’s appointment<br />with his EHR in his hands.<br />The in HIT<br />
  28. 28. We are all patients in the end.<br />
  29. 29. The other Q-Tip Therapy:<br />Draw with water color pencils.<br />Blend color with moistened Q-tip.<br />Feel better?<br />