Ghosts in the Machine
How my personal experiences prompted “Prescription: Networking.”
When I was a young man and very poor, I lived in West Oakland, a neighborhood of rundown Victorian houses on the flatlands east of San Francisco Bay, down by the Port. It doesn’t matter how I came to be there: in brief, I had nowhere else to go.
This was years after the factories had left Oakland, when crack was like a plague, and long before the technology boom brought software and life-sciences companies, a new population that was middle class and ethnically varied, and developers who built lofts and restaurants for the new residents. When I lived in West Oakland, on the street where the Black Panther Huey Newton was shot as he left a crack house one bleary morning, few of us had regular jobs; the town was mostly African-American; and, of course, no one had health insurance. When we got sick, we went to the emergency room of Highland Hospital in East Oakland.
Once, a feral cat bit through the tendon in my right wrist. When my arm swelled alarmingly, Kenny D– (who paid for his habit repairing Chester Street’s cars) drove me to Highland. I waited hours to be seen, more to be admitted. I wasn’t impatient; there were others in worse shape. A young man, maybe 15 years old, had been shot in the leg and was handcuffed to a gurney, a kind of bloody, swollen diaper attached to his leg. He waited, too, while a fat, bored cop dozed beside him. I was delirious by the time I got a bed and antibiotics. I spent two weeks in Highland.
On another occasion, I noticed that the side of my neck was strangely deformed. Again, I went to the emergency room of Highland. They scheduled a biopsy. The lump was a tumor, but the harried doctors were uncertain: was it malignant? Weeks of ineffectual diagnosis followed. What was strangest of all (and what I don’t understand now) was that I wouldn’t say or couldn’t remember the genetic condition that caused the tumor, which I had known about all my life. I was dazed by poverty and misfortune.
I lived in West Oakland after I had a job and the money to leave, fixed by some obscure spirit of loyalty. This time in my life made the strongest possible impression; I have never forgotten it, nor ever gotten over it. Oakland was my education in sympathy, and it formed what political feelings I possess. But my experiences there were never directly reflected in any of the magazines I have edited, which have been concerned solely with technology and science.
Recently, I saw a PBS Frontline documentary called The Released, which followed a group of poor, mentally ill men after they were released from jail. Each left with a bus ticket, $75 in cash, and two weeks’ worth of medication. The men did badly in homeless shelters and group homes. They could not find work and did not take their medications; soon they were back in prison or dead. What reminded me of my time in Oakland was that none of the hospitals or clinics had records of which medicines had effectively treated the men’s mental illnesses, and the men themselves wouldn’t say or couldn’t remember. They were ghosts. I was badly upset by The Released and wanted Technology Review to ask this question: Is there a technological solution to this small part of our larger health-care troubles?
David Talbot, our chief correspondent, found the answer. Boston Medical Center (BMC), which serves many of the city’s poorer patients, has built a network of physician-based electronic records, linking the hospital with 10 community health centers (see “Prescription: Networking”). We were eager to learn if the network helped the people it was meant to help, so Talbot spent days in the emergency room of BMC. There, he met Vera Sinue, who had been admitted with unstoppable vomiting.
Talbot describes what happened next: “The attending physician, Aneesh Narang, was understandably worried. He asked if this had happened before; she muttered that it had happened only in childhood. A sudden and acute bout of vomiting might … require speedy surgery. … But Narang called up the electronic records … [and] quickly saw that Sinue hadn’t told the full story. In fact, vomiting was a chronic issue; it topped her list of medical problems. … It’s not clear why Sinue hadn’t disclosed this information. (She later told me she might have forgotten.) …
[S]uch miscommunication ‘is not really that surprising–we get it all the time,’ says Andrew Ulrich, an emergency room physician who is also vice-chair of BMC’s emergency department. ‘You’d be amazed what people don’t remember.’”
BMC’s network is not sophisticated technology. The electronic records have neither genomic data nor images. But those records saved Sinue from a CT scan and a dose of radiation. She was given antinausea drugs and intravenous fluids. “Once the crisis passed,” Talbot writes, “a talk with a physician revealed that Sinue was distraught over a personal issue. When the subject came up, she was overcome with nausea. She got a referral for what she probably needed most: counseling.”
Often, a technology is “emerging” only in context. But when the context is suffering, it can make a small but important difference. Write and tell me what you think at email@example.com.
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