Elementary advocate


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This is my power point presentation before Avatar in Orlando on June 29th, 2011.

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Elementary advocate

  1. 1. Everything I needed to know <br />about being a patient,<br /> I learned in elementary school.<br />A patient and caregiver perspective presented by Regina Holliday<br />
  2. 2. 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 />Media would connect their hearts.<br />
  3. 3. And 14 years later they would meet upon a stage in a scenic painting class <br /> at Oklahoma State University. <br />And they would talk of media, Pop Culture and Stephen King’s Dark Tower.<br /> And they would fall in love.<br />
  4. 4. Fred and Regina married and they painted, worked and played together for many years.<br /> Regina worked in a toy store, taught pre-school art, and painted community murals.<br /> Fred continued his schooling and worked as video store clerk.<br />In 2005, <br />Fred would get a PhD in film studies<br />and would write his dissertation<br />About “Buffy the Vampire Slayer.”<br />In 1998,<br /> Freddie III joined the family game<br />followed by <br />the littlest player Isaac in 2006.<br />
  5. 5. For many years, <br />that was the Holliday Family story…<br />
  6. 6. In 2007, life seemed to be falling apart.<br />Our 9year old was diagnosed with Autism.<br />Fred was an adjunct at two colleges, but could not find a full-time job in his field.<br />Although Fred and I were working six jobs between the two of us, <br />we could not afford a family health insurance policy. <br />I was covered by the toy store, but we couldn’t afford the family rate and still pay rent. <br />
  7. 7. 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 />
  8. 8. 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 />
  9. 9. 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 />
  10. 10. 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 />
  11. 11. The Last Primary Doctor’s Appointment: A Very Short Play<br />Regina: “I didn’t see you weigh him.”<br />PA: “We don’t always weigh our patients”<br />Doctor: “Mr. Holliday do you think maybe you are depressed?”<br />Fred: (Looks up at Doctor with a look of dismay.)<br />Regina: “Of course he is depressed. He is in excruciating pain. We want an MRI.<br />…I am worried about his kidneys.” <br />
  12. 12. 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 />
  13. 13. “During this hospital stay, how often did doctors treat you<br /> with<br />courtesy and respect?”<br />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 />
  14. 14. Need the book: Under the Dome <br />Regina emails book buyer 4-3-09<br />Buyer emails book rep. 4-3-09<br />Rep emails publisher 4-3-09<br />Publisher gets approval from <br />Stephen King 4-3-09<br />Publisher mails it. Arrives 4-7-09<br />Fred reads book 4-7-09 through 5-1-09<br />Under the Dome is published Nov. 2009 <br />“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 />
  15. 15. Need Access to Fred’s EMR<br />Ask to read test results/lab/patient record <br />3-27-09 through 4-7-09<br />Nurse Internist Social Worker Oncologist<br />Nothing 3 minutes Fills out Fills out <br /> at computer disability forms disability forms<br />Ask to read test results/lab/patient record 4-8-09<br />Visit Oncologist during office hours<br />Speak about case, write down notes in journal <br />never shown the computer screen<br />Visit Medical Records Dept. 4-17-09 <br />ask for a copy of EMR <br />Quoted a price of 73 cents <br /> per page & a 21 day wait<br />Finally get a copy 4-23-09 <br /> due to a paper work error…<br />This is my husband’s <br />medical record.<br />I was told it would cost <br />73 Cents <br /> per page <br />And we would have to wait <br />21 days to get a copy<br />
  16. 16. “During this hospital stay, how often was your pain well controlled?”<br />
  17. 17. Fred was a “good” patient. He didn’t make waves. He didn’t complain.<br />After waiting three weeks for a surgery, chemotherapy, a palliative consult and walker,<br />The Doctor told us on Saturday April 18th, “We’ve decided to send you home on a PCA pump.” <br />
  18. 18. “Using 0 to 10 where 0 is the worst possible<br />and 10 is the best possible,<br />how would you rate this hospital?”<br /> 46<br />ambulance transports<br /> 6 hour wait <br /> while staff try to cobble together a medical record using <br />a phone and a <br /> fax machine<br />Treated at 5 facilities during <br />11weeks of hospitalization<br />Prescribed 4 types of<br /> Pain Killers and<br />4 types of Laxatives <br />3 months of <br />Primary Doctor’s Visits<br />2 Hospital Emergency Rooms<br />1 Patient named Frederick Allen Holliday II<br />
  19. 19. When I eventually got a copy of Fred’s record and it was instrumental in guiding Fred’s care. <br /> I used this information to create an easy to understand “face-sheet.”<br />This was the “Medical Facts Mural.” <br /> Then I painted it on a wall in Pumpernickel’s Deli in Washington, DC<br />for all of our neighbors to see…<br />
  20. 20. Next, my new friends in the world of Health 2.0 began blogging.<br />
  21. 21.
  22. 22. 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 />
  23. 23. Facebook: a PHR with Privacy Issues?<br />In the seven months prior to diagnosis, 10.7% of Fred Holliday’s Status Posts<br />Related aspects of his current medical condition…<br />He visited his Doctor weekly for a two month period prior to hospitalization. <br />He went to two different ER’s in the two months before diagnosis.<br />He exhibited all of the most common symptoms of Renal Cell Carcinoma...<br />And he listed 5<br /> of them on Facebook.<br />
  24. 24. Facebook <br />as a Caring Bridge<br />I joined Facebook on <br />September 14, 2008 <br />in order to organize the our son’s birthday party.<br />On March 25th 2009 I had 46 friends and had posted 67 status lines.<br />In the months during Fred’s hospitalization, <br />I would use Facebook as an <br />information clearing-house.<br />Hundreds of friends and family would log on in order to check Fred’s medical status. <br />
  25. 25. 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 />
  26. 26. 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 />
  27. 27. “Shouldn’t Art stick to what it does best- the delivery of pleasure? <br />And forget about being a Paintbrush warrior. <br />Or, is it when the bombs are dropping we find out what art is really for?”<br />-Power of Art by Simon Schama<br />I painted 73 Cents from June 23rd to September 30th 2009. It is still there today, at 5001 Connecticut Ave. in Washington, DC. It is a monument to Fred and patients everywhere.<br />And just like the internet, <br /> it advocates 24 hours a day <br />and you cannot tell a wall to shut up.<br />
  28. 28. 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 />
  29. 29. Sometimes, <br />we must look back to the lessons<br />of childhood to improve the world today.<br />We must remember, <br />“Just a girl” can save the world<br />Regina, age 6<br />
  30. 30. The world of HCAHPS meets the little girl in me. <br />
  31. 31. “What is the highest grade or level of school that you have completed?”<br />
  32. 32. How would the girl inside me change things?.<br />The way patients are treated reminds me child abuse in the 1980’s. <br /> No one talked about it. <br />Then we heard of Adam Walsh<br />and saw faces on milk cartons.<br />
  33. 33. We must be taught to Speak up.<br />
  34. 34. We must be taught to speak up, <br />again and again <br />until someone listens.<br />
  35. 35. During this hospital stay, how often did nurses explain things in a way you could understand?<br />A pre-School student can learn<br />how to care for others,<br />If that is what he is taught.<br />
  36. 36. And children, once silent, can march within a movement.<br />
  37. 37. Think outside the box. Toys can help youheal. <br />Gymnastic ribbons can be covered with ICD9 codes and used for a flash mob. <br /> Window stickers can turn a clinical room into a sacred space. <br />OgoSport rings can lift up your chin on your darkest day. <br />Puppets can help you say good-bye.<br />
  38. 38. How would a toy promote better care for patients?<br />Why not have CDS (clinical decision support) for patients? <br /> If a child’s toy can figure any item in the world in 20 questions, why<br />Can’t we have CPOE and CDS in every hospital and family practice? <br />Why can’t a patient input their own data using medical app on a smart phone while waiting in office or prior to the appointment?<br />
  39. 39. During this hospital stay, how often were your room and bathroom kept clean?<br />
  40. 40. To the shock and awe of my preschool students,<br />I began painting on my classroom wall in the last weeks of school.<br />They were astounded.<br />Every child knows you aren’t supposed to write upon a wall.<br />Unless …. it is really important.<br />
  41. 41. And every child knows not to get paint <br />on their best clothes, <br /> Unless it is for a very good reason<br />
  42. 42. I am glad that the child in me can tell the child in them,<br /> Sometimes we must right on walls, <br /> Paint on clothes, <br /> And mount the stage.<br />
  43. 43. Sometimes we must speak up, as a mother or brother, sister or friend.<br />Sometimes when we raise our hand in the classroom of the world,<br />We save a life. <br />Or just as importantly, we help people smile while they are dying.<br />