Tuesday, July 2, 2013

Arts Advocacy for Patients by Vera Rulon MS, RHIT, FAHIMA, FACMImimi

One of my favorite topics is the convergence of art, science and healthcare. I was inspired to draw this picture as I thought about three people who advocate for patients through the arts.
What do Regina Holliday, Dave deBronkart, and Dr. Ross Martin have in common? They each know that access to our personal health information is paramount to empower all of us to improve our personal health care. And they each express this through the arts.
Who doesn’t know Dave deBronkart, AKA ePatient Dave? Dave told his story of finding a treatment that saved his life by researching it himself at a TedX talk. He led the audience in chanting “Let Patients Help”.  Dave stated that “you are the most underused resource in healthcare.” It was his personal experience that helped him understand the importance of empowering the patient. Access to information allows us, ePatients, to be “Equipped, Engaged, Empowered, Enabled” (coined by Tom Ferguson, MD).
Regina Holliday, another familiar name, was empowered to advocate on behalf of patients everywhere after her husband’s death. The story of her husband’s suffering due to a poorly managed personal health information system is heartbreaking. She decided to express herself through painting. Holliday painted a mural in Washington DC called 73 Cents in reference to how much she was charged per page for access to his medical records. Through her project the Walking Gallery of Healthcare, Holliday engages people to wear her art, and contribute their own art, in order to tell the healthcare story, to put a face on patients all over the world. Regina painted my jacket earlier this year titled “Completing the Masterpiece” about my mother’s last days. In the picture, that’s me wearing my Walking Gallery jacket.
Which brings us to Dr. Ross Martin, who founded The American College of Medical Informatimusicology (ACMImimi). Ross delivers the healthcare message through music. You can hear The Meaningful Yoose Rap here on this site. You can also join in and become a member of the College. In collaboration with ePatient Dave and others, the College produced Gimme My DaM Data. DaM stands for ‘data about me’.
Ross’s music takes the idea of leveraging the arts to improve healthcare in a unique and creative way. Regina’s paintings resonate through visualizing and personalizing individual experiences. ePatient Dave’s talks and writings urge us to take charge of our healthcare. Self expression helps get the message out.
All three also leverage social media. That’s why, in the drawing, I have Regina’s Walking Gallery, Ross’s ACMImimi, and ePatient Dave on a laptop. The rest of it is my perspective… from where I sat when I drew the picture. You can see parts of my living room including books and the French doors leading into the room, among other things.