This document tells the story of Regina Holliday and her late husband Frederick Allen Holliday II. It describes their meeting in college, marriage, family including their son Freddie, and Frederick's eventual cancer diagnosis and death. The story is told through a series of poems and paintings that highlight Regina's advocacy for patient access to medical records and information after facing barriers herself in trying to understand Frederick's condition and treatment.

1. Painting the Picture: The Patient’s Perspective Painted and Presented by Regina Holliday

2. Where does a story begin and where does it end? PhD Father Husband Professor of Film Video Clerk Writer Son Regina Sue McCanless Wife Mother Daughter Sales Clerk Art Teacher Caregiver Widow Artist Poet Frederick Allen Holliday II, PhD

3. In 1978, there was a little boy named Freddie who lived in Maryland. And many miles away in Oklahoma, lived a little girl named Regina. And though miles would separate them, Stories would connect them.

4. 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.

5. Tides and tears, days and years, And new characters would enter Our personal story.

6. 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

7. Fred was happy with his new job. But he was very tired, He went to the doctor and was diagnosed with hypertension.

8. During the months of January, February and March of 2009, Fred was in constant pain. He visited two Emergency Departments and was sent home. He visited his Doctor’s office many times. He was given pain pills each time. Often he posted a Facebook status relating to his health

9. On Friday March 13th, We went to the ER because Fred was in so much pain . The waiting room was filled with stained glass windows and lovely blue couches. And Daddy waited, Mommy waited, Freddie waited and Isaac waited. And after 3 hours of waiting, they sent us home with pain medication.

10. 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 cell phone.

11. I asked everyone involved in Fred’s care about information on his case. What was the diagnosis? What were the treatment options? Would he get a pain consult? For asking questions, Fred’s oncologist called me “Little Miss A-type personality.”

12. 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.

13. “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.

14. “During this hospital stay, how often was your pain well controlled?”

15. After waiting for5days for a transfer to another hospital for a second opinion, they 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.

16. 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.

17. Why did we get more help and answers from Social Media than from our local hospital ? I got on Twitter on May 3rd to find Christine Kraft and e-Patient Dave to talk to them about kidney cancer. 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.

18. Facebook as a Caring Bridge

19. 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

20. Painting Advocacy meets Social Media Street art is truly the first global art movement fuelled by the Internet. –Marc and Sara Schiller, Wooster Collective, 2010

21. This is the painting 73 cents. This is the vital patient story, the social history , the sacred heart of Fred’s ELECTRONIC MEDICAL RECORD.

22. On Tuesday, October 20th 2009 We dedicated the Mural while singing songs from Buffy the Vampire Slayer Musical “Once More With Feeling.” When ended the night singing our question, “Where do we go from here?”

23. The world of HCAHPS meets the little girl in me.

24. Welcome to the Walking Gallery. We bring the Patient Voice. We bring new eyes and new vision. We walk and spread the word.

25. I am little Miss A-type personality…

26. And children, once silent, can march within a movement.

27. Isaac at his Doctor’s appointment with his EHR in his hands. The in HIT

28. We are all patients in the end.

29. The other Q-Tip Therapy: Draw with water color pencils. Blend color with moistened Q-tip. Feel better?