This is a speech that explains the reason why I paint and speak about information access and patient-centered care and suggest ways regular people can become change agents.

1. “Just a Girl,” The Power of the Story in Patient Art Advocacy 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. What is your favorite story? Mine is Mother Hulda, and it has helped define my life But my husband loved Buffy the Vampire Slayer, and loved it so much that he wrote his dissertation on it. He the loved Dark Tower so much that he died in its shadow. Combined these stories helped define us both. They taught us the power of the Long Story.

4. “So they were married, and lived happily ever after.” The Holliday Family Christmas 2007

5. 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

6. 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

7. 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.

8. 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?

9. 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.

10. 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 “She must have not tried very hard to get the record…..” Getting a copy of an unpublished book by Stephen King compared to patient access to EMR while hospitalized. 10

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

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

14. 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.

15. 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 useFacebookas an information clearing-house. Hundreds of friends and family would log on in order to check Fred’s medical status.

16. 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

17. 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.”

18. 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

19. “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.

20. 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?

21. In Buffy there are many foes to conquer. Is it the monster of the week? Is it the arch villain who has plotted all season? Or do we fight the Big Bad who fought against us for years? Is the Big Bad in medicine overall spending on healthcare in the United States? Maybe the Big Bad is a lower life expectancy due to lifestyle. Or perhaps the Big Bad is what happens if patients are kept Blind, Deaf and Dumb.

22. Involving Patients as a Path to Achieving the Triple Aim What Can You Do By Next Tuesday? Institute for Healthcare Improvement Fellows 2011 How would pop-culture define the IHI Triple Aim? Not as just another pyramid…. Not as just another failed pictograph campaign… What does it make you think of ? It makes me think of Tuesday nights watching Buffy. It reminds me that someone who is “Just a Girl” can save the world.

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

24. We must give patients and caregivers Permission to tell their story. And must help provideplatforms to spread their tale.

25. What can a public transit rider do to support change? Announcements such as “Hi, is that your bag? and “See it, say it” remind commuters that paying attention and reporting unusual or illegal activity can save lives. Metro understands how painful it is to wait when you have no idea when the train or bus is coming. Why accept this in a hospital setting as the norm? Should patients and family wait for 24 hours for a two minute visit with a doctor, and have no idea when or if the doctor is coming? Metro discontinued the use of paper bus transfers in 2008. Paper transfers contributed to waste and fraud. They did not allow for easy aggregation of data nor did they protect the consumer if lost. Alas, the majority of healthcare providers still use paper transfers throughout the United States. Riders should expect the services provided in health care systems to be at least as good as a city bus system.

26. How would atoy store clerk promote better care for patients? Compare POS (point of sale) system adoption rates to EMR (electronic medical records) adoption rates, and and ask what are we waiting for? Why not have CDS (clinical decision support) for patients? The 20Q Ball is a toy that combines a dictionary, an AI interface and a mathematical algorithm. It plays 20 questions with you. Why not have this kind of tool for diagnostic support as patients wait? Expect good customer service in medical environments. There is no excuse for poor eye contact, lack of proper greeting and poor communication in health. Be honest, open and transparent. Be the bearer of bad news with dignity and compassion. It can be hard to to face patients and family members to tell them bad news, but it is far worse to leave them in the dark or give false hope. 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.

27. 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.

28. 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.

29. How would an artist, a speaker or a poet promote Patient-centered Care? 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 I can tell you something about stories: They drive engagement. What we don't typically consider (and this is why stories are so controversial) is that stories become legitimized by an audience, nota storyteller. That's why some stakeholders resist - they don't want to legitimize a story, a rad idea or tribute or pain, by giving it a platform. Enter the Web, the blog, the phone, the community, the e-mail thread we're on. Stories. You know them when you see them. And sometimes you need to see them to believe them. This is tribal vernacular; animal instinct. –Christine Kraft, Contact Product Dir. Better Medicine, Perfect Sense Digital

30. 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?