My speech for June

1. Shining a Light in the Darkness Presented by Regina Holliday

2. This is Fred Holliday, II PhD and Regina Holliday. We met and married in 1993. We had two wonderful sons. Freddie in 1998 and Isaac in 2006.

3. From 1994 through 2008, I was working full time in retail sales, but I would try to find time to paint.

4. I would paint neighborhood murals. I would also Teach art at a local preschool.

5. Freddie’s IEP Binder We made a tough schedule work for many years, but in 2007, Or life seemed to be falling apart. Our 9year old was diagnosed with Autism. Fred was an adjunct at three colleges, but could not find a full time job in his field. Although Fred and I were working six jobs between the two of us, we could not afford a family health insurance policy. I was covered by the toy store, but we couldn’t afford the family rate and still pay rent.

6. Everything we ever wanted…Resolutions January 2008: Get Medical Insurance for the whole family Get little Freddie into a special needs school Fred gets a job in his field Spend more time together as a family Get a two bedroom apartment In September of 2008, Fred got his dream job and was hired at American University.

7. As the semester progressed Fred was really 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. 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.

10. 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.”

11. 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.

12. “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 Comparing access to an unpublished book by Stephen King to accessing the Electronic Medical Record while hospitalized. Just Days after admission to the hospital it was Fred’s 39th Birthday. I tried to get him many of the books he wanted, but one was not yet available. With what little information I could get about Fred’s disease, I was very concerned that Fred might not live to the Fall to read Stephen King’s New book: Under the Dome.

13. Need Access to Fred’s EMR Ask to read test results/lab/patient record 3-27-09 through 4-7-09 Nurse Internist Social Worker Oncologist Nothing 3 minutes Fills out Fills out at computer disability forms disability forms Ask to read test results/lab/patient record 4-8-09 Visit Oncologist during office hours Speak about case, write down notes in journal never shown the computer screen Visit Medical Records Dept. 4-17-09 ask for a copy of EMR Quoted a price of 73 cents per page & a 21 day wait Finally get a copy 4-23-09 due to a paper work error… Need the book: Under the Dome Regina emails book buyer 4-3-09 Buyer emails book rep. 4-3-09 Rep emails publisher 4-3-09 Publisher gets approval from Stephen King 4-3-09 Publisher mails it. Arrives 4-7-09 Fred reads book 4-7-09 through 5-1-09 Under the Dome is published Nov. 2009 13

14. I eventually got a copy of Fred’s record and it was instrumental in guiding Fred’s care. I used this information to create an easy to understand “face-sheet.” Then, I painted it on a wall in Pumpernickel’s Deli in Washington, DC for all of our neighbors to see…

15. Next, my new friends in the world of Health 2.0 began blogging.

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: a PHR with Privacy Issues? In the seven months prior to diagnosis, 10.7% of Fred Holliday’s Status Posts Related aspects of his current medical condition… He visited his Doctor weekly for a two month period prior to hospitalization. He went to two different ER’s in the two months before diagnosis. He exhibited all of the most common symptoms of Renal Cell Carcinoma... And he listed 5 of them on Facebook.

19. Facebook as a Caring Bridge I joined Facebook on September 14, 2008 in order to organize the our son’s birthday party. On March 25th 2009 I had 46 friends and had posted 67 status lines. In the months during Fred’s hospitalization, I would use Facebook as an information clearing-house. Hundreds of friends and family would log on in order to check Fred’s medical status.

20. Finally, two neighborhood moms organized a host of hundreds, to help provide food, rides, babysitting and donations. They used the site Lotsa Helping Hands to coordinate the tasks of daily life as well as two large fundraisers and moving our entire family to a new apartment.

21. 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

22. June 21, 2009 The Battle Begins “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. 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… 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. 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. I am the perfect storm… I will stand up. I will not be silent. I will not give up the fight.”

23. 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

24. “Shouldn’t Art stick to what it does best- the delivery of pleasure? And forget about being a Paintbrush warrior. Or, is it when the bombs are dropping we find out what art is really for?” -Power of Art by Simon Schama 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. And just like the internet, it advocates 24 hours a day and you cannot tell a wall to shut up.

25. On Tuesday, October 20th 2009 We dedicated the Mural while singing songs from Buffy the Vampire Slayer Musical “Once More With Feeling.” We lit the mural with 45 flashlights in honor of the estimated 45,000 people who die each year in the US due to lack of access to timely life-saving medical care. When ended the night singing our question, “Where do we go from here?” Who is the Big Bad we must defeat?

26. So what kind of light are we shining? A Light can be a spotlight an innovation or a weapon. How will we choose to shine our light?

27. How telling the story changes things. How would the child in me change things? The way patients are treated reminds me child abuse in the 1980’s. No one talked about it. Then we heard of Adam Walsh and saw faces on milk cartons.

28. We must give patients and caregivers Permissionto tell their story. And must help provide platforms to spread their tale.

29. On July 13, 2010 I had the honor of Speaking before the assembled at HHS. I presented the patient voice within Meaningful Use. There was another Regina there that day Doctor Regina Benjamin, Surgeon General presented her very gripping reason she supported Electronic Medical Records adoption in the united States.

30. How would a toy store clerk promote better care for patients? Why not have CDS (clinical decision support) for patients? If a child’s toy can figure any item in the world in 20 questions, why Can’t we have CPOE and CDS in every hospital and family practice? 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?

31. Think outside the box about what helps people heal. Gymnastic ribbons can be covered with ICD9 codes and used for a flash mob. Window stickers can turn a clinical room into a sacred space. Ogo Sport rings can lift up your chin on your darkest day. Puppets can help you say good-bye.

32. How would a mother of a special needs child create positive change in patient care? Demand that the level of family inclusion that is part of the IEP process become the norm in medical settings. 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. Support tools to overcome “face blindness.” Help people, autistic or not, to recognize faces and facial expressions, including pain.

33. How would a preschool teacher promote positive change in patient care? Disinfect surfaces. Discourage using a changing table as a surface for food consumption and wound care supplies. Wash and disinfect water pitchers before re-use. Encourage hand washing… Painted Hands by Guido Daniele because not all Little Beasties can be so easily seen.

34. The Onion and The Orchid: How would a Husband and Wife change things? While Fred was in hospice I wrote a very long letter to the first hospital Fred had been admitted to. Why do this? I wasn't preparing to sue the hospital. I wanted to inform the management of this facility of the systematic problems we had encountered. I had hoped we could encourage a necessary change within the organization. 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.

35. We were not the Patient or the visitor in room 6218. Fred was not the “unfortunate ym 39yrs.” I was not just little Miss A-type Personality. We had names. I am Regina Holliday. He was Fred Holliday II, PhD. I would speak out and reclaim our names.

36. How would I change things as an artist? I would wear the title given to me As a red badge of courage, As a Scarlet Letter. I would speak out across the nation. Sometimes, I would be the only patient Speaker in the room. A curiosity of the moment, with something very vital to impart. I would explain how patients and caregivers feel in the hospital, and I would do that with Art with a capital “A.”

37. I would paint the patient voice on walls and canvases all over Washington, DC And each time I would speak at different venues, I would try to paint as well, for each picture is worth a thousand words.

38. And I would ask all my friends, fellow artists, health technology gurus and health Professionals of they would join The Walking Gallery. They could bring the patient voice into rooms we were not invited.

39. What would you do to change things? What would you do as a wife or mother, a sister or brother, a co-worker or friend to change things... for them?