The Walking Gallery
Yesterday evening, my twitter-friend Regina Holliday sent me a tweet reading:
@ReginaHolliday Regina Holliday’s Medical Advocacy Blog: The Victim of the Game http://reginaholliday.blogspot.com/2011/09/victim-of-game.html?spref=tw
As you may not understand what this cryptic post title «The Victim of the Game» hides, I tell you straight away that it is the name of the 86th Jacket of «The Walking Gallery».
Before explaining further about the story of this jacket, I will go about the story of «The Walking Gallery». You may wonder what does that mean. No, I have not visited an art gallery to write my impressions from art exhibits. This is a very different gallery. It is called “walking” because the art is worn and painted on the back of tailored jackets and suits or on the back of health professionals white robes. It is a very different art, an art that tells the healthcare experience story of the bearer.
By now, you may ask yourself who paints on garments and why. That’s a sensitive, wonderful artist and awesome storyteller, Regina Holliday, the patient rights advocate and artist, I presented to you in my previous post “The Patient Voice Can Be a Very Powerful Tool”. Regina advocates for patients rights so passionately, diligently and effectively with her brushes, colors and stories that very few can match her many talents, inspiration, advocacy, emphaty and understanding of patients and families needs.
The Walking Gallery was born from a suggestion of Jen McCabe, one of the early twitter followers of Regina Holliday to paint
“a series of paintings on the back of her blazers to wear to upcoming health meetings”.
So Regina painted three jackets for Jen in winter 2009, who wore them at various healthcare events, then Elizabeth Cohen of CNN saw their tweets about the jackets and asked Regina to write an article about them. Two more people, Chiara Bell from Enurgi and Roni Zeiger of Google Health asked her to paint jackets for them. These are the five first painted jackets and the very start of The Walking Gallery.
On April 30 this year, Regina wrote in her blog a post and these are her words about what is The Walking Gallery:
We are the Gallery that walks. We are the Patients that wear our stories on our backs. Soon we shall to come to a city near you and create gallery space in moments. We won’t pound a single nail into the walls to hold the art. Dozens of people will walk into a space wearing business jackets or doctor’s lab coats. That alone is not unusual. But these jackets will be works of art. Each one shall be painted with the story of a patient or an element of medical advocacy by me or another artist. These masterpieces will be worn on the backs of government employees, technology gurus, medical professionals, social media activists, CEO’s of companies and artists. It shall be a great meeting of the minds.
This is the idea behind The Walking Gallery. Regina in April thought about organizing an event where patients, doctors, healthcare policy makers, carers, health IT professionals and other partners in healthcare would gather together wearing their painted business suits, white robes or jackets telling a patient story to raise awareness about what needs to be changed in healthcare. Regina sent a call to all her followers and other advocates and thought leaders in healthcare to send her their jackets for painting. That’s how I received in the first days of May a tweet “calling all jackets”. Regina had asked also other artists to help her paint and the herculean work of painting 70+ jackets by a few artists in just 35 days started.
As I could not travel to Washington in June, I asked Regina if she could paint for me later this summer. The big day or rather evening was on Tuesday, June 7, 2011 when the Kaiser Permanente Center for Total Health, in Washington DC, became an art gallery for one night. That night like minded people from various paths of health and healthcare, people who try everyday to make healthcare an easier place to navigate, a safer place to have care, a place where information flows without gaps and obstacles, a place where compassion and empathy reign, met to wear their artwork jackets to raise awareness about the patient stories of the wearers that reveal much needed changes that should be brought in healthcare.
One might argue why do you talk about things that happen so far away, why should we care about what happens in American healthcare. Because indeed it is very different from our healthcare system but also so much similar!! Here too patients face gaps in their care because the various members of the medical team do not communicate among them and don’t bother to update the patient’s record with their remarks. Instead of an electronic medical record that can be carried in a USB and easily communicated among health professionals, the patient often carries a hefty big sack of medical records and imaging in every medical appointment. Health professionals often neglect to take all patient safety measures, medical errors happen and are not acknowledged, doctors hardly see any patient more than ten minutes and so many more similarities….So, patients face similar problems irrespective of the countries they live in, and that is why participation in The Walking Gallery matters.
Let’s come back to the Jacket «Victim of the Game» that Regina painted for me. Regina has read last week my two interviews with Silja Chouquet of www.whydotpharma.com on Access to medicine: the EU crisis, pharma and social media in which we talk about medicines, the economic crisis, the problems patients faced when companies stopped medicines deliveries. The second interview was with Rebecca Aris of www.pharmaphorum.com on Patient Perspectives: Kathi Apostolidis in which we talked about patient groups, lessons learnt from personal healthcare experiences.
My jacket was in her hands already for a few weeks together with my personal healthcare experiences but it seems that these interviews rang a bell with her memories of an old song of Garth Brooks: Victim of the Game and she painted a patient and a man in business attire playing poker, under a stained glass poker lamp having the colors, which in the US are linked with the easiness and simplicity of applications transferring electronic medical records. The patient looses and the man wins the game but instead of chips he has in front of him
«Lids and jars of prescription drugs are scattered on the tabletop. The vital medicines pool before our corporate player as he gathers them up with a bewildered glance.»
Regina refers to recent shortage of diabetes and cancer medicines in Greece at the beginning of this summer of which there was mention in the interviews. This was a result of pharma stopping deliveries to push the state to pay long overdue debt. The anxiety of diabetes and cancer patients scouting pharmacies all over the country to find any remaining medicines was in the news everyday. I am afraid that this might be something Greek people might endure again in the coming months as the continuing economic crisis deepens, since I heard over the week-end that another medicine, a statin taken by those who have high cholesterol also is not to be found….
It can be quite unsettling. People will stop and stare. You can now enter a conference and feel like an outsider. Ostracized. You can be given the gift of experiencing the disconnected feelings of the ignored patient in the room. People will point and talk about your back like you are not even there. You are “case,” an object, you exist to be described and critiqued. And after being at a conference all day, you can take that jacket off, and be normal again. Or not. You can “come out.” You can let go of that other title, be it, Techie, Doctor, CEO or founder of a non-profit. You can cease to be defined as the cog you appear to be in the machine called medicine. You can be simply patient. You can tell your personal story and reach your inner center as a patient.
The Victim of the Game Jacket, that now crosses the Atlantic, will walk this month at the European Cancer Congress in Stockholm for the Patient Advocacy and Ethics Session to speak about «How Health Professionals and Patient Groups Are Using Social Media», in Salzburg at the Salzburg Global Seminar it will attend a session on «Innovating for Value in Health Care Delivery: Better Cross-Border Learning, Smarter Adaptation and Adoption» and in December it will attend the SABCS-San Antonio Breast Cancer Symposium in San Antonio, Texas to learn about new therapies and research in breast cancer. In between, the Victim of the Game Jacket will also walk in other local oncology and healthcare events.