Clocks have no hands – because of the suspended reality of hospital stays. Nurses at their computers peer at a dark screen – because records aren’t being shared with patients and families. A doctor has her hands tied – because the parts of the health care system don’t communicate with each other. Silos crack and burn.
Regina Holliday’s artistic focus shifted from the classroom to the hospital room after her experiences with a husband dying of kidney cancer in 2009 where she was denied access to his medical records and crucial information as he was admitted to five different hospitals over his last 11 weeks of life.
Since then, she has painted murals of her husband’s hospital room and belatedly obtained medical chart on building walls. She has painted the health care stories of nearly 500 other people on jackets, in what she calls The Walking Gallery of Healthcare, and she has spoken at scores of medical conferences, to advocacy groups, doctors and policy makers whenever and wherever she can.
Holliday will bring her perspectives and her story on Feb. 15 at 7 p.m. in East Tennessee State University’s Culp Auditorium for ETSU’s annual An Evening of Health Wellness & the Arts. A catered reception will follow the talk and Q&A.
“We’ve had filmmakers,” says Anita DeAngelis, Director of the Martin School of the Arts at ETSU. “We’ve had storytellers. We’ve had plays and magic. We’ve had a musician, but we have not brought a visual artist to ETSU for this special evening. Regina’s story is both heart-wrenching and filled with hope and action. I think it will be enlightening and inspirational.”
In her Medical Advocacy Blog, Holliday says there have been steps forward and disappointments in her nearly 10 years of attending conferences and public meetings.
“I have watched [Health Information Technology for Economic and Clinical Health] legislation morph and change,” she said. “I have watched the [Affordable Care Act] 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 health-care meetings, to a hashtag on Twitter (#patientsincluded), to a trend of conferences inviting patient speakers,” Holliday continued. “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.”
Yet, the crusader perseveres. She continues to paint new walking murals with new health care stories and she continues to travel and speak out. “I speak a lot nationally about health care and I speak about Fred and how he was treated,” says the now-single mother of two sons, “and every single time I speak, somebody gets up and hugs me afterward and they’re crying because the same thing just happened to them.”
Whether it’s through a painting or a presentation, Holliday calls it “providing a patient voice … and by doing so, [we are] are changing the conversation.”
For more information on Regina Holliday, visit her Medical Advocacy Blog at http://reginaholliday.blogspot.com.