Regina Holliday

JOHNSON CITY – Regina Holliday paints the health care picture from a different perspective – that of the patient. 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, in which 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 has spoken at scores of medical conferences, to advocacy groups, doctors and policy makers whenever and wherever she can.

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,” she said.

Holliday will share her perspectives during East Tennessee State University’s annual “An Evening of Health, Wellness and the Arts” on Thursday, Feb. 15, at 7 p.m. in the D.P. Culp University Center’s Martha Street Culp Auditorium. The event is co-sponsored by the ETSU Mary B. Martin School of the Arts, College of Public Health and Quillen College of Medicine. A catered reception will follow the talk as well as a question-and-answer session.

“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 annual event. Regina’s story is both heart-wrenching and filled with hope and action. I think it will be enlightening and inspirational.”

Holliday’s bold, public advocacy for what she calls “digital medical record transparency” 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, Alabama.

“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.…”

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 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.

“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. 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.” 

Holliday 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.”

The event’scombination of health and arts offers students in health care fields and community members opportunities to hear, perceive and discuss health care in new ways. “‘An Evening of Health, Wellness and the Arts’ allows people working in the health profession to see their work, and themselves, through new eyes – the eyes of the artist,” says Dr. Randy Wykoff, dean of the College of Public Health.

For more information on Holliday, visit her 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 or @artsatetsu, or call 423-439-8587. For disability accommodations, call the ETSU Office of Disability Services at 423-439-8346.