January 17, 2012

In the company of the brave

I wandered through the crowded reception hall. It was one of those social mixers, an after hours HIT conference reception. The room was dimly lit and wine glimmered ruby-red through champagne flutes.

I almost bumped into the man.

He was tall and clean cut. His nametag clearly stated that he worked for an EMR company. I engaged with him in small talk; then he cocked his head to one side and said he thought he had heard of me. I mentioned that I was not surprised as I had been speaking about the patient role in HIT adoption for the past two years.

But I had not spoken before his company.

I have spoken before hospitals, government agencies and EMR vendors. Indeed, I have spoken before Cerner, not once, but three times. The first speech I delivered away from my native Washington, D.C., I delivered in Kansas City at Cerner headquarters. They invited me to speak for over an hour based on five minutes of my testimony on Meaningful Use. That was rather brave. I could be called a “loose cannon,” an activist with no comforting ties to a non-profit or health care agency.

But Cerner gave me the stage, and then posted my speech on YouTube for the entire world to see. For the past two years that I have been speaking and painting, I have heard many positive comments about Cerner. When I hear these comments, I tweet about them to @Cerner, and @Cerner rapidly responds. When I asked Clay Patterson and David Sides to consider joining the Walking Gallery, they did. When Cerner saw an opportunity to actively engage the population surrounding Kansas City in a healthy living weight loss challenge, programming teams worked around the clock to make the KC Slimdown Challenge a reality.

I have been in a room filled with CMIOs and knew just as much about their Cerner system as they did, because the folks at Cerner showed the features to me. I may only be a patient speaker and artist but I was treated as a valuable sounding board in every interaction with Cerner staff.

All these things I told the tall, clean-cut man whilst he looked down at me with a bemused smile.

No, I have never spoken before his company.

I have spoken before Cerner. They invited me. I am glad they did.

Regina Holliday is a DC-based patient rights arts advocate. Regina began painting a series of murals depicting the need for clarity and transparency in medical records. This advocacy mission was inspired by her husband Frederick Allen Holliday II and his struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities. After his death resulting from kidney cancer on June 17, 2009, she began painting a mural entitled “73 cents." It depicts the Holliday family’s journey through the medical system. Regina also paints on canvas at medical conferences throughout the US. She paints the concepts discussed and presents them through a patient’s view. She also began an advocacy movement called “The Walking Gallery.” The Gallery consists of artists, medical providers, technicians and advocates who wear patient-centered care paintings on the backs of business suits. Regina is a 2011-2012 Fellow with TMIT: She will appear in the upcoming Safety Leaders/Discovery Chanel documentary: “Out of the Danger Zone” and is part of the creative team working on The Patient Speakers Portal.