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BOSTON -- For Regina Holliday, patients' rights to their own health data is personal.
Many patients' rights advocates have also been spurred to action by their own experience with a healthcare system or provider, but few have scaled their activism to as wide and influential an audience as the artist and muralist based in Maryland.
Holliday, known nationally for her "Walking Gallery" artworks painted on people's jackets -- including one worn by National Coordinator for Health IT Karen DeSalvo, M.D. -- is also a passionate medical advocate for patients' access to their own health data.
Regina Holliday keynote at Allscripts user conference
At the annual user conference of Allscripts Healthcare Solutions, Inc., Holliday, who spoke without notes, visibly moved the audience of about 2,000 with the story of her 39-year-old husband's death in 2009 of metastatic kidney cancer.
Holliday believes that late diagnosis, unresponsive and impersonal healthcare providers, and a cumbersome system of printed health records contributed to her husband's death.
When Fred Holliday II was near death, Holliday was told by another doctor that her husband's physician was the only one who could tell her about his condition, but that he was away at a conference.
Blunted access to medical records
Meanwhile, "There are computers all over the hospital and you can't show us the medical record?" Holliday said in her keynote on the closing day of the Allscripts Client Experience meeting at the Boston Convention and Exhibition Center.
While Fred Holliday II at first didn't want to be known as "that patient making waves," Regina Holliday said a few months before he died, he inspired her to take on the mission of campaigning for rights to health data.
"Go after them, Regina," he said.
While Holliday is perhaps best known for passionate medical advocacy centered around her unique art, she also focuses on more techie health IT issues such as advocacy for the ONC's "Blue Button" health records initiative and interoperability.
One particularly galling incident during her husband's illness, which Holliday has famously memorialized in a mural, is when a hospital tried to charge her 73 cents a page for his health records.
"You're crazy," she recalled saying. "It's in the computer. All you have to do is push a button."
Holliday also recounted episodes from her autistic older son's encounters with healthcare providers to illustrate both the good (a doctor who looked up symptoms on a laptop with her son) and the bad (a doctor who turned his back on her son at a desk).
Throughout her recent career testifying at federal hearings and speaking and painting at health IT conferences across the country, Holliday has used Twitter as a platform for delivering her message.
Medical advocate turns to Twitter
During her husband's ordeal, she became convinced of the medium's power when she had a Twitter dialog with a Harvard kidney cancer specialist who expressed honesty and compassion on the social media service and inspired her to move her husband to hospice.
Toward the end of her hour-long speech, Holliday broke down in tears.
So did some in the audience, which gave her a standing ovation.
"Wow, what an incredible message," said Martha Thorne, senior vice president and general manager for Allscripts Population Health, from the stage immediately afterward.
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