Earlier this month, The Health Care Blog featured a piece titled “Will Regina Holliday Become Health Care’s Rosa Parks?” Like the famed civil rights activist, Holliday is also an advocate for freedom and rights. The details, however, differ considerably as Holliday is a patient-rights arts advocate behind “The Walking Gallery,” a series of paintings on suit jackets and blazers that are on display at health meetings across the world—now on five continents. Holliday became a patient advocate since the loss of her husband Fred Holliday II to cancer in 2009.
|Holliday and Scher are noted proponents of data access.|
Later, Jen McCabe, a friend of Holliday's who worked at the time for Contagion Health came up with the idea of attending a medical conference wearing jackets with paintings on them. “She said to me: 'you can paint anything you want on my back and I'll wear it.'”
The first three jackets Holliday painted related to the topic of data access for patients. Then, Roni Zeiger, MD, who worked in Google Health saw them, and he wanted one. "So I painted one that was about data access for him, too." Another jacket focused on caregiving followed. There are now more than 140 paintings in the series, the majority painted by Holliday, who explains the mission behind The Walking Gallery on her blog:
We are the Gallery that walks. We are the Patients that wear our stories on our backs. Soon we shall to come to a city near you and create gallery space in moments. […] Dozens of people will walk into a space wearing business jackets or doctor’s lab coats [that] will be works of art. Each one shall be painted with the story of a patient or an element of medical advocacy by me or another artist. These masterpieces will be worn on the backs of government employees, technology gurus, medical professionals, social media activists, CEO’s of companies and artists. It shall be a great meeting of the minds.
|David Lee Scher, MD, exhibiting a piece of The Walking Gallery titled "Return to Sender."|
I first stumbled across Holliday’s work not at a conference or trade show but on Twitter via David Lee Scher, MD, who wore a jacket featuring Holliday’s handiwork titled “Return to Sender” to Heart Rhythm 2012. Scher, a former cardiac electrophysiologist who is an mHealth and patient rights proponent and the founder of DLS Healthcare Consulting, which gives advice to companies in the digital health space.
Scher is vocal on the topic of patient access to biometric data gathered by devices such as implantable defibrillators, pacemakers, and glucose monitors. The topic of patient access to device data has been getting a good amount of attention lately, following an impassioned plea from Hugo Campos at TEDx and a number of other outlets for manufacturers to share data from implanted defibrillators with patients who want it.
That point was echoed in a recent conversation I had with Eric Topol, MD, director of the Scripps Translational Science Institute and author of “The Creative Destruction of Medicine,” has said: “If [patients] don’t want the data, that is another matter. But if they are asking for it, why shouldn’t it be provided? Why is it only given to the doctor?”
Holliday’s “Return to Sender” piece captures this point beautifully: The data should be available to patient from whom it came—the sender.
Scher is helping to help make that happen through his work with a group at the Heart Rhythm Society that in turn is working with an international HIT agency called the IHE (Integration for Health Enterprise) to standardize clinical and technical company agnostic cardiac terms for EHRs. “After this process is completed, the stage will be set for patients to receive direct access to data,” Scher explained in an e-mail. “This will happen. It is more a technical issue than a political one. All the companies are in agreement that patients deserve their data.”
Brian Buntz is the editor-at-large at UBM Canon's medical group. Follow him on Twitter at @brian_buntz.