This piece is cross-posted on the Health Standards blog.
A few days ago, a group of e-patients gathered in rural Grantsville, Maryland, to share work and ideas, create art, and improve our broken healthcare system. Cinderblocks 3: The Partnership with Patients was the third in a series of conferences organized by artist and activist Regina Holliday.
Part of the event was the dedication of a permanent physical structure for The Walking Gallery of Healthcare—a movement in support of patients’ rights through which artists paint patient stories on the backs of jackets that people wear to medical conferences.
Though I’m not a “Burner,” Cinderblocks 3 felt more like how I imagine Burning Man than like the typical healthcare conference, and not just because of the fire dancing or the communal painting activity under a tent. At its core was a generous spirit of inclusiveness, and a genuine desire to improve healthcare for all. I feel refreshed and re-energized by being a part of it, and I wanted to share my main takeaways.
At the dedication of Salt and Pepper Studios, home of The Walking Gallery. At the dedication of Salt and Pepper Studios, home of The Walking Gallery.
It’s all about the patient. No, really.
Though a few years ago this wasn’t remotely the case, nowadays, healthcare leaders publicly extol the virtues of patient centeredness and patient engagement at nearly every conference, yet so often the healthcare system and mainstream healthcare conferences themselves continue business as usual. At Cinderblocks 3, by contrast, the patient and his or her story is the starting and ending point, not a marginal flourish. When an individual stands before a group to share intimate details of his or her life with HIV, loss, discrimination, or a suicide attempt, there’s just no room for bullshit.
As e-patient Casey Quinlan puts it, “don’t let propriety stand in the way of truth.”
Whole person health
Many participants in Cinderblocks 3 underscored the integral role of mental health in overall health. As speaker Robb Fulks said, “If I don’t believe I can heal from the inside out, I won’t heal from the outside in.”
Yet he and others vividly described the stigma associated with mental health, and how today’s model of treatment, which generally requires a diagnosis prior to authorization of payment for care, discourages people from seeking help, and magnifies the risk of discrimination. Many of those who can’t access good mental health care end up getting some kind of treatment eventually, he said… in jail.
Art is a powerful communicator
Diverse arts lend themselves to storytelling, and to healthcare. Marsha Goodman Wood presented evidence on the healing powers of music (hers can both lift the heart and wash the hands). Health IT rock star Ross Martin performed his unique blend of songs on love, policy, and health data. There were poems, a voice performance by Brian Be, and plans by artist John Magnan to build towering sculptures to raise awareness of clinical trials. Oh, and fire dancers (no FHIR yet—maybe next year when Mark Scrimshire and Carly Medosh successfully convert CMS’s Blue Button function to the emerging standard).
Taking action is its own medicine
One of the best parts of the conference was the opportunity for unhurried one-on-one conversations. At the first Cinderblocks conference, such a conversation led then strangers Diane Stollenwerk and Pat Mastors to form the Patient Voice Institute.
This time I found myself in a long conversation with the poster boy for patient engagement, e-Patient Dave. (I’m allowed to tease him about that, since I put his handsome face on everything from posters to coasters when I worked at ONC.) We were talking about the many benefits of patient engagement, including better information for providers. Another often-overlooked benefit is the power of agency. Awful things happen to everyone, but feeling powerless multiplies their impact; taking action—whether in improving your own health or that of the country—brings a sense of satisfaction, optimism, and purpose.
Regina Holliday chose the name “Cinderblocks” for the conference in reference to an experience from her childhood in which her elementary school class, lacking basic infrastructure, built its own shelves for books. Looking back, she said about it, “We loved those shelves because we overcame adversity and made that which we needed. It wasn’t pretty, it wasn’t perfect, but it was ours.”
Yes, please. More of that.