Widow paints clear picture of health care openness from patient perspective, guest for annual ‘Evening’
Regina Holliday paints the health care picture from a different perspective – the patient’s.
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.
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 Thursday, Feb. 15, at 7 p.m. in East Tennessee State University’s Martha Street Culp Auditorium, for ETSU’s annual An Evening of Health Wellness & the Arts. An Evening is co-sponsored by the ETSU Mary B. Martin School of the Arts, the College of Public Health and the Quillen College of Medicine. A catered reception will follow the talk and Q&A.
Holliday’s bold, public advocacy for what she calls “digital medical record transparency” also has inspired comparisons to Rosa Parks, whose brave stand on a bus in 1955 triggered a bus boycott and eventually public transit desegregation in Montgomery, Ala.
“The protest organized by Regina Holliday over a patient’s right to access their medical information is not quite the same magnitude as agitating for integration in 1950s-era Alabama,” says Michael Millenson in Forbes magazine. “Yet there are intriguing similarities between the crusade Rosa Parks launched then and what Holliday is attempting today. Both involve a refusal to accept second-class status and a resolve to push back against entrenched institutions …
“Also like Parks, Holliday is part of a larger community that shares a similar outrage over being relegated to the back seat, even if in the doctor- and hospital-dominated world of health care, the ‘back of the bus’ is symbolic rather than literal.”
“I have watched [Health Information Technology for Economic and Clinical Health] legislation morph and change,” she says. “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 [Affordable Care Act] become the law of the land, only to see constant steps to repeal it.
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.
For more information on this event or Mary B. Martin School of the Arts, visit www.etsu.edu/martin, @artsatetsu or call 423-439-8587.