Regina Holliday

Founder of The Walking Gallery of Healthcare honors friend and a leader who lent her voice to patients who needed to be heard.

When I was a child we looked forward to our birthdays with joy and trepidation.  Yes, we would get a few presents, a birthday cake and for a few very fortunate children there would be a birthday party to attend. But we would dread school on our birthdays.    Back then there were birthday spankings. Ah, the acute embarrassment of going to the front of the classroom and bending over a desk to receive a spanking for each year of our lives.  These spanks weren’t too painful, but then there was the “one to grow on.” That final spank packed quite a wallop and many a child would return to their seats rubbing their behind.     When Alex Fair asked me to paint him a new jacket for him to wear in the Walking Gallery, I painted him with a birthday cake and candles. I named it "The candles that never go out."  I painted his happy face in darkness lit by flames and wrote Medstartr Ventures upon that cake for his work to help raise funds to improve healthcare. I have known Alex for almost seven years.  I know he still fights to improve healthcare when so many have dropped away from our cause.  I know he celebrates each year that his work struggles on as our changing economy and riotous political structure provides a type of encouragement that closely resembles that final birthday smack. Alex’s first jacket is falling apart. He wore it often in the last six years. He joined in the beginning, when I did not know you should not paint on corduroy.   I am glad he will wear this new one.  As I said on twitter the other day, “An army of change needs uniforms.”  I want you to think about that. Why do armies need uniforms?  Most importantly it shows which side you on in wartime. Joining The Walking Gallery shows that you are very much on the side of patients and overall improvement within healthcare.  Uniforms also make it really hard to set down your mantle of beliefs.  When we publicly wear our stories upon our backs it can be as heavy as a rucksack, yet not as easily set aside.  This blog was first published on Regina Holliday's Medical Advocacy Blog.

Recently, planners of an upcoming event asked me some questions and here are the answers: 1. How would you define the role/responsibilities of a “patient” advocate? The patient advocate can be defined in several ways. Sometimes this is an official staff member in a facility. They can operate as a patient navigator or customer service operative.  In the best scenario, their job is to help the patient understand the processes and options in care within the facility. In the worst scenarios, the patient advocate operates as a tool of damage control to damper litigious action of distraught family members. Sometimes the patient and family hire a patient advocate from a registry like the AdvoConnection. In this case the advocate may be a nurse, a doctor, or a trained and experienced caregiver who helps the patient while hospitalized or at home. They obtain medical records, ask questions, keep notes, help patients make their own difficult medical decisions, and review and negotiate medical bills. Often the patient advocate is a close friend or family member who is not paid for their service. This advocate provides many of the same services as a paid advocate, but often is learning on the job. Occasionally they have a background in medicine, and use that knowledge to great success helping the patient ask the right questions and get appropriate care at the correct time. Finally, there are patient advocates focused on policy. I am often classified among this category, although I prefer the term patient activist. A patient advocate focused on policy attends local, regional, state, and federal meetings to provide a patient perspective in policy decisions.  *(This is by no means meant to be an exhaustive definition of a patient advocate. Just how I define it in response to this question. There are several other resources out there to learn more http://pacboard.org/2016/03/09/patient-advocacy-vs-medical-advocacy-view-from-the-pacb/ is one.) ** (Additional edits were made on 10-5-16 to clarify the responsibilities of patient advocates in relation to the AdvoConnection.) 2. You do a number of these sorts of speaking engagements and presentations around the country. Are there some unifying themes- – clear trends – you see, common ideas that many people share about their worries or attitudes toward healthcare? Patient safety? Patient advocacy? I have been attending medical conferences and public meetings for the past seven years. In that time I have watched HITECH legislation morph and change. Patient access to data at stage one of meaningful use had budding teeth and at stage two it got poor fitting dentures. I have watched the ACA become the law of the land, only to see constant steps to repeal it.  I watched the concept of patient engagement grow from a demand in small healthcare meetings to a hashtag on twitter (#patientsincluded), to trend of conferences inviting patient speakers. I hoped that the next step was true partnership in decision-making and design. Sadly, of late I have often heard that “patient engagement” was out of fashion. We are now onto MIPS and MACRA and massive ACO’s.  I have watched patient safety advocates work for years with very little attention paid to their cause. I was happy to see alue Based Care begin to role out, as it addressed so many concerns of these advocates. I am saddened to hear how many attendees at conferences expound on their love for fee-for-service.  Or twist the intended purpose of reducing readmissions, by leaving patients in hallways for days to be “observed,” but not admitted after complications. The most apparent trend of the past seven years is that there are powerful lobbyists in this industry that will do anything to keep the status quo alive and well in healthcare. There are also amazing individuals, often on Twitter, (check out #hcldr), that will not stop fighting for the patient voice and the positive disruption that comes when data silos are leveled and technology is used appropriately. 3. Will patients ever be like consumers of other products? Outside of elective procedures or choosing a birthing place/option, how much real consumer choices do patients have in their healthcare? How would you like to see those avenues expanded or re-routed? I hate the word “consumer” when applied to healthcare; it assumes we take and never give. Partnership in care requires two-way communication. Care is always about choice. When we embrace price transparency, a patient can decide which facility has the most affordable MRI procedure. When we have medical record data transparency coupled with a clinical trials database, a cancer patient can decide the best personal path for their care. Which may include a hospice path, if that is their choice.  We have a choice right now. The difference in healthcare is that we have to fight for that choice, whereas in retail it is expected that the customer will decide which items to buy rather than the shopkeep.      4. How would you like to see healthcare systems and hospitals – particularly public and teaching systems – involve patients or their advocates in meaningful aspects of care best practices, policy making and priority-setting? Patients, caregivers, and patient advocates need to be present in meetings throughout the facility.  For far too long we have been forced into the role of lobby designers.  We ask that you invite us to take part and provide appropriate recompense for our time.  Or schedule the meeting after the workday is done at the facility.  That would be fine.  Then everyone at the table can be the unpaid volunteer that patients and family caregivers are so often asked to be.   You might want to make sure we can have those meetings next to a playroom though, so our children can play together while we work together to create new policy. Because whether you are a patient or a provider, childcare is expensive.   5. How would you describe your painting style and approach? My art looks like the work of the children’s book illustrator Garth Williams and the activist painter Diego Rivera fused. As a few people have told me over the years,  “Your work is often sweet and disturbing at the same time.” 6. Describe the healing benefits and/or the impact that making art that tells stories about health care can have on patients, survivors, care providers? As far as a healing benefit, the art process is a type of meditation and that can help soothe the soul.  It is a very nice feeling to be in the zone and at one with the cosmos. But the creation of art could feel like a nail ramming through my hand, and I would still create. I use art as a tool and the goal is to impact others. It is very easy to push aside someone’s story, if that story is only the bullet point on a slide or the footnote in an academic article.  It is much harder to look away at the painting on someone’s back, screaming at you like so many wheals and welts.  To know this image is someone’s story. To look at the painted eyes that look into yours and seem say, “I died, and it is all for naught if you do not act.”  7. Of all the art you’ve made--your Walking Gallery, the murals -- can you choose one piece and describe it and explain why it’s a piece that you especially want to share? My favorite piece is “Are you alright?”  In that painting, I captured my late husband Fred.  He stares at me from that painting like he is still with me.  Still alive on pigment covered canvas.  Still urging me to help him, a patient. And every day I do exactly that. This blog was originally published on Regina Holliday's Medical Advocacy Blog.

On August 10, I was so excited to share that we had reached another milestone in the Walking Gallery. Five years into our patient rights movement we had reached 400 members!  I even shared the post that lists where everyone lives. I loved the picture blogger chose for the post. It was me and Jess assembling the Walking Gallery in its lego form. A lot of people read that post and reminded me they had moved to a new state or country. I dutifully changed the post for each request. Today I added a new country to the post. I called it Heaven. I placed Jess Jacobs there and cried. Isaac saw me crying and asked me why. I told him Jess Jacobs died. Our friend from D.C. we played legos with and visited in the hospital.   Jess had been fighting for her life for years. You would have never known that from looking at her. She was a statuesque beauty who understood health policy. She was gracious and kind and great at Twitter.      Jess Joined the Walking Gallery in 2012 and her jacket is number 211. "Is she okay?" Her patient story told about her POTS condition.       When I painted her jacket, I depicted one of the times she fell faint to the pavement. She woke to find strangers looking down upon her. She would laugh off such medical adventures and do her job and help her friends. She helped build the lego Walking Gallery and helped prepare for the 2012 gathering in D.C.         In the summer of 2013, I moved to Grantsville and did not get to see Jess as much in person. She began to have more problems with her care and we created a secret group on facebook to help Jess. I recruited lovely friends who live in DC and who had never met Jess before but would come over to check on her and make sure she was okay. Jess reached out to many other close friends and added them to the group so she could have advocates and people to help.         For the past two years I have had to watch from afar as this wonderful woman grew sicker. I watched her fight to keep working, fight to be admitted to hospitals, and fight to be believed.     I watched as so many people fell away from her life as it became clear that she was not getting better.   I asked her to join us at Cinderblocks 2 in May. She said she would love to go but she thought she was probably too sick.    This is the way I would like to remember Jess. I see her at my dining room table building lego mini figures with Isaac.    But I will always see another Jess, as I advocate for better healthcare around the world. I will see her as a patient that the system failed to care for. I will see her struggle and I will fight for change.   I will never forget she was the first to fall. We will miss her always.    This post originally appeared on Regina Holliday's Medical Advocacy blog.

This is the sixth year of the Walking Gallery of Healthcare.  We now number over 300 members walking around the world with patient story paintings on our backs.  We are attending medical conferences where often there isn’t a patient speaker on the dais or in the audience. We are providing a patient voice, and by doing so, are changing the conversation. An artist or artists interviews medical professionals and lay individuals to form a patient centric narrative. The artist then creates representational imagery and paint that picture story upon the business jacket of the provider of the narrative account. The provider of the patient story aka “Walker” wears the jacket to medical conferences and events in order to disseminate the patient story to a large group of policy minded attendees and to represent the individual patient voice in venues where they are underrepresented. Further, both artist and walker will support the spread of the story and image via social media. As of July 2016, 396 unique Walkers have joined the Gallery wearing 434 jackets.  The Gallery has representatives on five continents, but the majority of Walkers reside in the US. One artist creates the majority of the art, but new artists are frequently joining the movement.  The Gallery is promoted heavily on twitter, facebook and personal blogs.   Its widening appeal within the health conference community is creating a new space for patients at such events. The names of the Artists of The Walking Gallery followed by the quantity of jackets they have painted:   1. Regina Holliday, 376 jackets 2. Isaac Holliday, 1 jacket 3. Becca Price, 1 jacket 4. Miriam Cutelis, 1 jacket 5. Ess Lipczenko, 1 jacket 6. Ben Merrion, 1 jacket 7. Courtney Mazza, 8 jackets 8. Michele Banks, 1 jacket 9. Megan Mitchell,1 jacket 10. Robert J. Filley, 3 jackets 11. Anita Samarth, 1 jacket 12. Mary Welch Higgins, 2 jackets 13. Richard Sachs, 2 jackets 14. Jonah Daniel,  1 jacket 15. Fred Trotter, 1 jacket 16. Leela, 1 jacket 17. Gayle Schrier Smith, 1 jacket 18. Moira Simms, 1 jacket 19. Joan Holliday, 1 jacket 20. Adalyn, 1 jacket 21. Chris Chan, 1 jacket 22. Amy O'Hanlon, 1 jacket 23. Vera Rulon, 1 jacket 24. Jessica Nicula, 2 jackets 25. Nikai, 1 jacket 26. Deonm, 1 jacket 27. Daquane, 1 jacket 28. Olivia Dias, 1 jacket 29. Donnell Bonaparte, 1 jacket 30. Hazel F., 1 jacket 31. Rachel Fields, 1 jacket 32. Zoe Carr, 1 jacket 33. Thomas Richardson, 1 jacket 34. Tamela Mack, 1 jacket 35. Julia Anderson, 1 jacket 36. DJ Hamilton, 1 jacket 37. Jenn Toby, 1 jacket 38. Camala Walling, 1 jacket 39. Jordan Lanham, 1 jacket 40. Josh Miller, 1 jacket 41.  Te'j Matthews, 1 jacket 42.  Tony Zieger, 1 jacket 43.   Shannon Shine, 2 jackets 44.   Melody Smith Jones. 2 jacket 45.  Kay Seurat, 1 jacket    For more information about joining the movement or to see all 400 plus jackets, please scroll to the bottom of this post. The Walking members who joined in Year Six:   434. "Growth" a jacket for Corinna West   433. "The Anointed Ones" a jacket for Benjamin Berlin     432. "Boston Heart Mom"  a jacket for Tami Rich   431. "At the End of my Rope" a jacket for Abby Bott   If you are interested in joining the Walking Gallery, here is the info: http://reginaholliday.blogspot.com/2016/03/how-do-you-join-walking-gallery.html If you would like to help fund the movement: https://www.gofundme.com/h2dsdwe4  Here is a short film about the movement: Read: http://reginaholliday.blogspot.com/2011/04/walking-gallery.html  to understand the origin of the idea.  

Cinderblocks 3: The Partnership with Patients Continues is an art and medical conference that will be held in Grantsville, MD at Penn Alps Resturant and Little Crossings by The Cornucopia Café May 19-21, 2016.