The irrepressible Regina Holliday is doing it again. This week will be the third time the mighty patient advocate, author and founder of the Walking Gallery of Healthcare is holding the “Cinderblocks” conference, a patient-led art and medical forum which has become sort of a revival meeting for patient advocates. Among headliner presenters is our friend and colleague, patient engagement advocate and kidney cancer survivor e-Patient Dave deBronkart. But the force behind the conference is Regina. (Read a recent USA Today profile of her work here.)
I remember attending the very first Cinderblocks conference in Kansas City, Missouri, and finally getting a chance to know Regina, whom I’d spotted during a previous conference in her customary venue – bellied up to her easel, clad in a smock, paints splayed in front of her. Labeled “Little Miss Type-A personality” by one of the doctors who treated her late husband, she proudly sports a big letter “A” she painted on the back of her own signature red jacket, as a key reminder of her own health care journey. For the uninitiated among us, Regina leverages her passion for storytelling and artistic talents to paint wildly expressive paintings on the back of business jackets.
The coveted jackets are worn at medical conferences and other events, where they’re guaranteed to prompt conversations. 44 artists have since participated, but most of the jackets (about 350 out of more than 400) were painted by Regina herself. She continues to churn out jackets, in between delivering keynote speeches, volunteering in her community, raising funds to buy and build a home for the Walking Gallery in her hometown, and raising two boys on her own.
Launched into patient advocacy by the death of her beloved husband Frederick from kidney cancer, and struggling to get him good care as he was moved from facility to facility, Regina fought to get his medical records. She was told it would take 21 days and she would have to pay 73 cents per page (there were 162 pages). “73 Cents” became the name of the mural she painted on the side of a garage in Washington, DC, depicting the full array of both shameless and heroic acts by the medical team that surrounded her husband in his final days. The Walking Gallery became an extension of this work.
The Cinderblocks conference will always be extra special to me and Diane Stollenwerk. It’s there we met, in 2012, cabbing together with e-Patient Dave from the airport to the hotel. We reveled in the energy, enthusiasm and brainstorming at this aptly named “unconference”. And it was on the very last day, departing for home, that Diane and I first sketched out the idea for what would become PVI on the back of a cocktail napkin.
This year’s Cinderblocks is in Grantsville, MD. Here’s how to get tickets, and here’s the full agenda. Through the miracle of technology, PVI will be able to visit with our friends virtually.
We’re looking forward to checking in. Patient advocacy is often lonely work; these regular infusions of energy, optimism, community and creativity help keep us going. You can be sure Cinderblocks, and the community built by Regina Holliday, will bring it, in spades.
By Pat Mastors, PVI Executive Director & Co-Founder. This post originally appeared in Patient Voice Institute.