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The power of a story
 

The power of a story

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A deck that describes my first year of advocacy and hopes to inspire others to change the world.

A deck that describes my first year of advocacy and hopes to inspire others to change the world.

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  • Hi, my husband received his diagnosis of renal cell carcinoma on March 27. At that point, I began to email, do Internet research, try to find every resource I could to help him. I began to Facebook--Facebooked every night daily, stating his status, developed over 200 friends and then began to Twitter, ended up speaking to a doctor from Boston, Mass. Did everything I could as a caregiver to support my husband using the Internet. Developed a blog. Also asked for Internet data. Prior to this I did not (often) email, nor did I use a cell phone. During a three month period (I) became complete caregiver and a walking PHR for my husband. I am asking you how will the patient and patient advocate be allowed to access the information of (the) EMR, to have that a standardized form, that we all as advocates of our spouses or loved ones, (can) provide the best the best level of data and catch all kinds of errors in the medical record?” -Regina’s Question to Aneesh Chopra 6-29-09

The power of a story The power of a story Presentation Transcript

  • The Power of aStory by Regina Holliday
  • Disclosure Slide I have presented or painted before these venues and companies: 2.02.0
  • I am Regina. I am named after a great Aunt Regina who died at the age of five from scarlet fever. My mother embroidered this prayer that hung above my bed as a child. Every night I prayed and was reminded that this night could be the last.
  • The writing on the wall: Art, balance and the IEP
  • Patient Reported Data is very important.
  • When the abuse becomes too bad call this number.
  • 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.
  • You know it is true love when you sell your comic book collection to pay for the wedding.
  • Fred and I married, worked and played together for many years. Fred continued his schooling and worked as video store clerk. In 2005, Fred would get a PhD in film studies and would write his dissertation About “Buffy the Vampire Slayer.” In 1998, Freddie III joined the family game followed by the littlest player Isaac in 2006.
  • I would paint neighborhood murals. I would also teach art at a local preschool. I would work in a toy store.
  • The Holliday Family Christmas 2007
  • 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
  • Fred was happy with his new job. But he was very tired, He went to the doctor and was diagnosed with hypertension.
  • During the months of January, February and March of 2009, Status Lines…
  • On Friday March 13th, We went to the ER because Fred was in so much pain . We waited three hours before being sent home.
  • Fred was hospitalized on March 25th 2009 for the administration of tests. On March 27th, he was told while alone that he had “tumors and growths.” He was scared and confused and did not understand. His oncologist left town for the next four days to a medical conference and was not reachable by phone or email.
  • What was the diagnosis? What were the treatment options? Would he get a pain consult?
  • Systems Error: More than a bad doctor
  • This is my husband’s medical record. I was told it would cost 73 Cents per page And we would have to wait 21 days to get a copy.
  • “She must not have tried very hard to get the record….” Comparing access to an unpublished book by Stephen King to accessing the Electronic Medical Record while hospitalized.
  • “Go after them Regina.” April 18, 2009
  • After waiting for 5 days for a transfer to another hospital for a second opinion, We were sent with an out of date and incomplete medical record and transfer summary. The new staff spent 6 hours trying to cobble together a current medical record Using a telephone and a fax machine.
  • This is the vital clinical information from Fred’s electronic medical record. Presented in the style of the Nutrition Facts Label. Then painted on the wall of Pumpernickel’s Deli in Washington, DC.
  • “What about the chemotherapy?” We were told the order had been placed. It did not come.
  • It’s a small world after all…
  • I am trying to talk with Christine Kraft and epatient Dave. 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.
  • Going to Hospice.
  • 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
  • The Power of a Story Written on the Wall June 23, 2009
  • Attend Free Public Meetings June 29, 2009 I am asking you how will the patient and patient advocate be allowed to access the information of (the) EMR, to have that a standardized form, that we all as advocates of our spouses or loved ones, (can) provide the best the best level of data and catch all kinds of errors in the medical record?”
  • “I applaud you for what you (are) doing with limited resources to try to help your family, but I am committed to making sure we have a foundation available so that clinicians on their own and by themselves and amongst themselves can start to have those kinds of transactions captured.” -Aneesh Chopra, Chief Technology Officer and Associate Director of Technology I didn’t see patient access to the EMR addressedin his answer.
  • Share your Story July 23, 2009 Senate Press Conference: High Costs of Health Care
  • Talk to the Press
  • This is the painting 73 cents. This is the vital patient story, the social history , the sacred heart of Fred’s ELECTRONIC MEDICAL RECORD.
  • On Tuesday, October 20th 2009 we dedicated the mural, “Where do we go from here?”
  • Art as an action: May 17, 2010
  • …in front of ahospital
  • Testify: April 20, 2010 Access to the Electronic Medical Record: A Patient and Caregiver Perspective Testimony before the HIT Policy Committee Meaningful Use Workgroup, April 20th, 2010
  • Meaningful Use: Stage 1 Announcement July 13, 2010 I had the honor of speaking before the assembled at HHS as the patient voice in HIT.
  • Be the change you wish to see.
  • The Walking Gallery
  • The more stickers that are out there the more important it seems. The more important it seems, the more people want to know what it is. The more they ask they ask each other. It gains real power from perceived power.-Shepard Fairey
  • David Lee Scher, MD All over the world, patients Are demanding their data. They are demanding access to the data from their doctors, from their hospitals, and from the devices inside of their bodies.
  • Blue Button: More than app for veterans and the story of Peter L. Levin
  • Do you know about Engage with Grace? Alex Drane created this after losing a family member.
  • Freddie Holldiaygrows beyond peering through a door crack to walking in a Gallery.
  • Isaac grows up. He joins the gallery as an artist. His jacket is named “Feelings.” In this year’s jacket he focused on diabetes care.
  • Standing out and looking different, Can be uncomfortable or frightening. But is often needed for advocacy. You can take a negative and turn it into a POSITVE. ~ @ReginaHolliday
  • Let Patients Speak We must encourage every committee, conference and hospital board, to actively recruit and include patients in every aspect of the care process from design to implementation to resolution. Invite patients and you will include artists, poets and writers in creating health policy.
  • The power of a story multiplied by 260