The hall was full of people clad in conference attire: black suits, white shirts, and, for some, an adventurous pop of color in a shoe or a tie. As the speakers presented the latest data from their research, my eyes drifted to my fellow conference attendees, seeking something — anything — to help my jet-lagged mind stay focused and alert.

A woman sitting a few rows ahead caught my eye. She was wearing a yellow jacket with a curious painting on the back. Jackpot. The painting depicted a rolodex with individual names scrawled across the cards. On the right side, a woman lends a hand to people caught in the cards, while others she has helped toe a tightrope leading to a computer, the ALS Advocacy logo splashed across the monitor.

Over the next few days, I got to know the jacket’s owner, Cathy Collett. I learned of her mother’s battle with ALS and how the painting on the back of Cathy’s jacket, The Rolodex, represented her fight for ALS patients.

Cathy is one of the nearly 500 members of The Walking Gallery of Healthcare, a “loose confederation of like-minded people trying to change the world,” according to Regina Holliday, the movement’s creator. Each year, members wear a jacket decorated with a painting unique to their healthcare journey to relevant conferences to ensure the patient voice is heard.

Walking Gallery of Healthcare members aim to spark dialogue and ensure that patients and their wants and needs — especially access to their health data — are part of healthcare discussions.

In the interview below, Holliday shares the story of her husband’s illness and her battle for his health data, thoughts on patient access to health data, and the genesis of the Walking Gallery of Healthcare as a disruptive and important force for bringing patient voices into the conversation.

Regina Holliday on...

Data:

“In patient populations, we really don’t want to hear the word 'compliant' anymore. We have a decision to make and we can decide to adhere to your recommendations or not. But it is the patient’s choice. Information allows you to make that choice.”

 Healthcare:

“We’re headed into a word with more home-based care. And as this worldview keeps changing, you know, focusing in on that patient view - that is where the future of care is."

The Walking Gallery of Healthcare:

“In war, you’re wearing a uniform. And one of the reasons you’re wearing a uniform… is so people know what side you are on. We’re obviously on the side of patients. The other thing about a uniform is that you can’t abandon the struggle wearing a uniform. You have to keep going.”

To learn more about Holliday's work, please visit her website or follow her on social media @reginaholliday. Want to read more stories like this? Visit our Patient Stories page.