Artist Regina Holliday’s Medical Advocacy Blog is “A place where art, medicine, social media and pop-culture collide and create a patient voice in health information technology”. She encourages people to paint patient-centered care stories on the backs of business suits. She calls this the Walking Gallery. You can check out the first year of the Walking Gallery – there are some fabulous stories there.
As you can tell, the painted jacket, above, is not a traditional business suit. It’s red satin, which is what
Matthew Holt, founder of The Health Care Blog, wanted to use for his painting, which is called “ACEs”. The painting shows how a pediatrician has integrated the CDC’s Adverse Childhood Experiences Study . It depicts Dr. Nadine Burke surrounded by the children who are part of her practice at Bayview Child Health Center in San Francisco. Each holds an ace playing card, representing one type of adverse childhood experience. Holliday devotes this blog post to the description of the painting, her own ACEs and her family’s.
So Nadine is incorporating this study into her care design. She is treating each child with the knowledge that they are predisposed to suffer certain health conditions. I sincerely hope those technology firms designing electronic health records learn from her work. The electronic health record cannot be an episodic receipt of care; instead it must provide a view of a life in its entirety. What happened yesterday has great impact upon today.As an adult reading this study, I know I must communicate more with my doctor, as I am one of those lucky ones. I hold four of a kind in this game. When my youngest son Isaac saw the picture he wanted to be included. I did not want to do that. But he’s the kicker, for no matter how hard I tried to have him live a childhood better than my own, his father has died.
For more about the amazing Regina Holliday, check out her blog. In brief, she’s an artist who lives in Washington, D.C., and who came to this work through the experience of her husband’s “struggle to get appropriate care during 11 weeks of continuous hospitalization at 5 facilities”. After he died of kidney cancer in 2009, she began painting a mural that shows her family’s experience with the medical system. At medical conferences, she paints “the concepts discussed and presents them through a patient’s view”.
“A lot of big, ugly guys. We wear leather, we ride motorcycles, you kind of have that mystic of, ‘Hey, I don’t want to mess with that guy,” says Harold “Redleg” Taylor, president of the Flatrock Chapter of Bikers Against Child Abuse.
They are the idealic image of tough guys but with a soft spot for children.
“We will do whatever it takes to protect one of our children okay? So if asking nicely doesn’t work, we’ll ask nicely twice. The second time usually works,” says Taylor. “When that child finds out that we’re on their side, you know, it’s kind of like having a big brother.”
THE US JUSTICE DEPARTMENT SUED THE TOWNS OF Hildale, Utah, and Colorado City, Ariz., in a federal court in Salt Lake City last Thursday, according to this report by Associated Press journalists Brian Skoloff and Paul Foy. Most of the towns’ residents are members of the Fundamentalist Church of Jesus Christ of Latter Day Saints (FLDS). Even though the church’s leader, Warren Jeffs, was sentenced to life in prison last year for sexually assaulting two of his underage “brides”, he still runs the church from prison, according to the story.
Authorities in a pair of polygamous Utah-Arizona border towns have supported a campaign of intimidation against the unfaithful, denying them housing and municipal services and allowing members of the dominant religious sect to destroy their crops and property, the U.S. Justice Department said in a lawsuit.
“The cities’ governments, including the Marshal’s Office, have been deployed to carry out the will and dictates of FLDS leaders, particularly Warren Jeffs and the officials to whom he delegates authority,” the lawsuit states. “The Marshal’s Office has inappropriately used its state-granted law enforcement authority to enforce the edicts of the FLDS, to the detriment of non-FLDS members.”
In one case of law enforcement misconduct, according to the suit, officers rounded up all dogs and shot them in a “slaughter pit” outside town on specific orders from Jeffs.
For a detailed account of the FLDS cult – where child rape, incest and sex abuse is ritualized, women and children are enslaved, and teenage boys ostracized….kidnapped and dropped on the streets of Las Vegas…to eliminate competition with adult men – read this story by Debra Weyermann on High Country News. It’s one of the most compelling stories I’ve read about the FLDS. Once you start reading, you won’t be able to put it down. You’ll need to sign up for a 30-day free trial subscription, or you can get access to and support HCN’s great journalism by subscribing for 6 months for $12. (Disclaimer: I once served on HCN’s board.) Here’s the intro:
Rumors swirled around the courthouse in San Angelo, Texas, last summer. Prosecutors had charged Warren Jeffs — leader of the nation’s most notorious polygamous sect, the Fundamentalist Church of Jesus Christ of Latter-Day Saints — with sexually assaulting two underage girls in the group’s Texas compound. For weeks, spectators whispered that the prosecutors possessed a vivid “rape tape” from 2006. When the audio recording was finally produced, however, no amount of preparation could buffer the shock. Photographs projected on an enormous courtroom screen showed a freckle-faced, 12-year-old redhead, bundled head-to-toe in the trademark FLDS pioneer-style dress and caught in an awkwardly posed embrace with her 6-foot-4-inch, 50-year-old “husband.” With her braids, she resembled the pre-teen heroine of the Pippi Longstocking books and movies. The jurors stared at the images, openly dreading what they were about to hear. Prosecutors handled the recording gingerly, as if they feared to touch it.