The eye in hit

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This is my speech before the Regional HIT Meeting in Philadelphia July 13th.

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The eye in hit

  1. 1. Ephphatha:<br />the Eye In HIT<br />A Patient and Caregiver Perspective: Consumer Engagement with Electronic Health Records<br />By @ReginaHolliday<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. Patient Reported Data is very important.<br />
  4. 4. Even a child <br />can understand<br />and appreciate <br />health <br />Information.<br />Both Quantitative<br />and <br />Qualitative. <br />
  5. 5. 14 years later, I would meet Fred on stage in a scenic painting class at<br />Oklahoma State University.<br />Wewould talk of Stephen King’s Dark Tower.<br /> Andwewould fall in love.<br />
  6. 6. 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 on<br />Buffy, <br />the Vampire Slayer.<br />In 1998,<br /> Freddie III joined the family game<br />followed by <br />the littlest player Isaac in 2006.<br />
  7. 7. For many years, <br />that was the<br />Holliday Family story…<br />
  8. 8. 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 />
  9. 9. 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 />
  10. 10. 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 />
  11. 11. 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 />
  12. 12. 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 />
  13. 13. 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 />
  14. 14. 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 />
  15. 15. 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 />
  16. 16. 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 />
  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. 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 />
  19. 19. Next, my new friends in the world of Health 2.0 began blogging.<br />
  20. 20.
  21. 21. 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 />
  22. 22. 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 />
  23. 23. 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 />
  24. 24. 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 />
  25. 25. 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 />
  26. 26. “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 />
  27. 27. 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 />
  28. 28. Patients can write <br />Onion Letters <br />Or<br />Orchid Letters.<br />We can do many things to <br />speak up, join the conversation<br />and reclaim our names.<br />
  29. 29. We can remember the Visions of our Childhood<br /> These are the features in our neighborhood.<br /> The Bakery Circa 1980<br />When was the last time you used a<br />Rotary Dial Phone?<br />Or was cashiered at a <br />hand crank cash register?<br />
  30. 30. The Doctor’s Office circa 1980<br />How much has the picture changed at your local Doctor’s office?<br />
  31. 31. Patients can complete the story of care<br />Nurses Progress Notes:<br />04.18.09 09:00<br />Look Dick.<br />See Sally and Tim.<br />Funny, funny Sally.<br />Funny, funny Tim.<br />
  32. 32. The patient record <br />makes a lot more<br />sense if you include<br />the full picture.<br />
  33. 33. These paints are same color<br />They are defined by their tone.<br /> They provide a scale of Value.<br />
  34. 34. This is another scale of value. <br />“During this hospital stay, how often was your pain well controlled?”<br />
  35. 35. There are a lot of people <br />A patient meets <br />Along the Path of the <br />Beam.<br />Is the Dark Tower <br />leading us ever forward?<br />Is it a Beacon?<br />
  36. 36. The Power of Beacon Communities<br />
  37. 37. When we light the beacon, <br />we can connect silo’s of thought and realize the potential of a fully functional <br />Health Information Exchange.<br />
  38. 38. A consumer’s pledge to participate in <br />Adoption of Electronic Health Records<br />Is more than a Public relations strategy. <br />It is a Scared Oath<br />
  39. 39. When venders talk with Patients,<br />We realize we share the same vision.<br />
  40. 40. When venders speak <br />with patients,<br />A simple logo<br />Becomes a web<br />Of community engagement<br />Or a game that children play.<br />
  41. 41. When Venders invite patients to play the game,<br />Everybody WINS.<br />
  42. 42. When Patients join in the conversation<br />A scorecard or a survey<br />can become a child’s report card.<br />And that provides <br />visual and emotional impact.<br />
  43. 43. And when an e-prescribing company <br />invites a patient advocate to speak at an<br />International Ophthalmology Conference<br />their shared vision creates a <br /> new picture of understanding.<br />
  44. 44. What sunk the <br />Titanic?<br />It wasn’t an Iceberg, <br />It was a failure<br />To correctly use <br />Wireless Communication.<br />
  45. 45. The Patient Story <br />is sometimes dark and sometimes light.<br />But both are needed for a masterpiece.<br />And the Picture is not complete unless <br />we are all part of the picture<br />
  46. 46. Thank you for the conversation. Let’s stay in touch. You can find me as…<br />@ReginaHolliday on Twitter<br />Regina Holliday Washington DC on Facebook<br />Regina Holliday on SlideShare<br />ReginaHolliday on Flickr<br />

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