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Shining a Light in The Darkness


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My speech for June

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Shining a Light in The Darkness

  1. 1. Shining a Light in the Darkness<br />Presented by Regina Holliday<br />
  2. 2. This is Fred Holliday, II PhD and Regina Holliday. <br /> We met and married in 1993. <br /> We had two wonderful sons. <br /> Freddie in 1998 and Isaac in 2006.<br />
  3. 3. From 1994 through 2008,<br />I was working full time in retail sales, <br />but I would try to find time to paint. <br />
  4. 4. I would paint <br />neighborhood murals.<br />I would also <br />Teach art at a local preschool.<br />
  5. 5. Freddie’s<br />IEP Binder<br />We made a tough schedule work for many years, but in 2007,<br />Or life seemed to be falling apart.<br />Our 9year old was diagnosed with Autism.<br />Fred was an adjunct at three 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. I was covered by the toy store, <br />but we couldn’t afford the family rate and still pay rent. <br />
  6. 6. Everything we ever wanted…Resolutions January 2008:<br />Get Medical Insurance for the whole family <br />Get little Freddie into a special needs school<br /> Fred gets a job in his field<br />Spend more time together as a family<br /> Get a two bedroom apartment<br />In September of 2008, Fred got his dream job and was hired at American University. <br />
  7. 7. As the semester progressed Fred was really 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. 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 />
  10. 10. 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 />
  11. 11. 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 />
  12. 12. “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 Electronic Medical Record while hospitalized. <br />Just Days after admission to the hospital it was Fred’s 39th Birthday. I tried to get him many of the<br />books he wanted, but one was not yet available.<br />With what little information I could get about Fred’s disease, <br />I was very concerned that Fred might not live to the Fall to read Stephen King’s New book:<br />Under the Dome.<br />
  13. 13. 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 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 />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<br />is published Nov. 2009 <br />13<br />
  14. 14. 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 />Then, I painted it on a wall in Pumpernickel’s Deli in Washington, DC<br />for all of our neighbors to see…<br />
  15. 15. Next, my new friends in the world of Health 2.0 began blogging.<br />
  16. 16.
  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: 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 />
  19. 19. 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 />
  20. 20. Finally, two neighborhood moms organized a host of hundreds, to help provide food, rides,<br />babysitting and donations. They used the site Lotsa Helping Hands to coordinate the tasks of <br />daily life as well as two large fundraisers and moving our entire family to a new apartment.<br />
  21. 21. 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 />
  22. 22. June 21, 2009 The Battle Begins<br />“I cared for my husband for his last three months. I saw some very good care and too often, very poor care. I found out things I had never wanted to know. I discovered how bad it can get when you are hospitalized in this country.<br />I did not ask to be handed this cup; I will drink from it, though. I will let the anguish of us all pour out through me. I will be his voice. I will be your voice. We are all patients in the end. We should have the right to be treated with dignity and respect…<br />Now I gird for battle. I am a liberal Democrat raised in Oklahoma by conservative Republicans. I am a Lutheran whose best friends represent many faiths. I am a mural artist in Washington DC and was Oklahoma State Champion in original oratory.<br />I have worked in a factory, in food service, in retail, as a teacher, and served briefly in the Navy. I am a mother of a special needs son and I am the widow of a good man.<br />I am the perfect storm…<br />I will stand up. I will not be silent. I will not give up the fight.” <br />
  23. 23. 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 />
  24. 24. “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 />
  25. 25. 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 />We lit the mural with 45 flashlights <br />in honor of the estimated 45,000 people <br />who die each year in the US due to lack <br />of access to timely life-saving medical care.<br />When ended the night singing our question,<br />“Where <br /> do we go <br /> from here?”<br /> Who is the Big Bad we must defeat?<br />
  26. 26. So what kind of light are we shining?<br />A Light can be a <br /> spotlight<br /> an innovation<br /> or <br />a weapon. <br />How will we choose<br />to shine our light?<br />
  27. 27. How telling the story changes things.<br /> How would the child in 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 and saw faces on milk cartons.<br />
  28. 28. We must give patients and caregivers Permissionto <br /> tell their story.<br />And must help provide platforms to spread their tale.<br />
  29. 29. On July 13, 2010 I had the honor of <br />Speaking before the assembled at HHS.<br />I presented the patient voice within <br /> Meaningful Use.<br />There was another Regina there that day<br />Doctor Regina Benjamin, Surgeon General <br />presented her very gripping reason she supported Electronic Medical Records adoption in the united States.<br />
  30. 30. How would a toy store clerk 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 />
  31. 31. Think outside the box about what helps people heal. <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 />Ogo Sport rings can lift up your chin on your darkest day. <br /> Puppets can help you say good-bye.<br />
  32. 32. How would a mother of a special needs <br />child create positive change in patient care?<br />Demand that the level of family inclusion that is part of <br />the IEP process become the norm in medical settings.<br />Use the right to patient data access within Meaningful Use, like a parent uses the right to records access provided by the Freedom of Information Act.<br />Support tools to overcome “face blindness.” <br />Help people, autistic or not, to recognize faces and facial expressions, including pain. <br />
  33. 33. How would a <br />preschool teacher promote <br />positive change in patient care?<br />Disinfect surfaces.<br />Discourage using a changing table as a surface for food consumption and wound care supplies.<br />Wash and disinfect water pitchers before re-use.<br />Encourage hand washing…<br />Painted Hands by Guido Daniele<br />because not all Little Beasties can be so easily seen.<br />
  34. 34. The Onion and The Orchid:<br />How would a Husband and Wife change things?<br />While Fred was in hospice I wrote a very long letter to the first hospital Fred had been admitted to.<br />Why do this?<br />I wasn't preparing to sue the hospital.<br /> I wanted to inform the management of this facility of the systematic problems we had encountered.<br />I had hoped we could encourage a necessary change within the organization.<br />I hoped to channel the grief and frustration I was feeling into some kind of positive outcome. I also wished to regain our dignity, for in the process of becoming victims we had lost our personhood.<br />
  35. 35. We were not the <br />Patient or the visitor <br />in room 6218.<br />Fred was not the <br />“unfortunate ym 39yrs.”<br />I was not just<br />little Miss A-type Personality.<br />We had names. <br />I am Regina Holliday.<br />He was Fred Holliday II, PhD.<br />I would speak out and reclaim our names.<br />
  36. 36. How would I change things as an artist?<br />I would wear the title given to me<br />As a red badge of courage, <br />As a Scarlet Letter.<br />I would speak out across the nation.<br />Sometimes, I would be the only patient <br />Speaker in the room.<br />A curiosity of the moment, with something very vital to impart.<br />I would explain how patients and caregivers feel in the hospital, and I would do that with <br />Art with a capital “A.” <br />
  37. 37. I would paint the patient voice on walls and canvases all over Washington, DC<br />And each time I would speak at different venues, I would try to paint as well,<br /> for each picture is worth a thousand words.<br />
  38. 38. And I would ask all my friends, fellow <br />artists, health technology gurus and health<br />Professionals of they would join <br />The Walking Gallery.<br />They could bring the patient voice <br />into rooms we were not invited. <br />
  39. 39. What would you do to change things? <br />What would you do <br /> as a wife or mother, a sister or brother, <br /> a co-worker or friend<br /> to change things... for them? <br />