Steven Keating’s appetite for knowledge may well be the reason he’s alive.
In 2007, his high-minded curiosity drove him to get his brain scanned while studying mechanical engineering at Queens University in Canada. The scans revealed a faint abnormality near the part of his brain responsible for processing the sense of smell. But since his health otherwise seemed normal, Keating thought nothing of it.
But seven years later, while a student at the Massachusetts Institute of Technology Media Lab, Keating experienced an odd sensation: Several times he detected a whiff of vinegar — a phantom odor, it would turn out — but the feeling would quickly pass.
With those earlier images in mind, Keating urged doctors to again scan his brain, and this time the results revealed a fist-size tumor. Within three weeks, Keating underwent a 10-hour surgery at Brigham and Women’s Hospital, where doctors extracted the tumor in golf ball-size chunks.
At Keating’s request, the procedure was videotaped. It wasn’t just a keepsake: Keating posted parts of the video on his website, just one volume in a library of data about his health and illness that he’s been publishing since the diagnosis in August. He obtained his medical records and posted those online.
In the parlance of the tech world, Keating “open-sourced” his illnesses. He’s invited friends, colleagues in the field — even total strangers — to view his most personal health information and offer comments and suggestions about his treatment, all part of a grand quest to understand himself, quite literally, from the inside out. He’s become a champion of a movement to provide patients with more information about their health — down to the sequence of genes causing their illness.
“Open-sourcing helped me find my tumor, helped find the best method of treatment,” he told a packed auditorium of cancer researchers at MIT’s Koch Institute in November, wearing a hot pink shirt under a black blazer to, as he said, “lighten the mood.”
In the last year, between doctor visits, radiation treatment, and finishing his graduate degree, Keating has been making a case for getting patients with conditions like his access to their medical and research data.
George Church, the Harvard geneticist who began the Personal Genome Project 10 years ago to publish thousands of human genomes, said Keating’s experience exemplifies a younger generation comfortable with sharing personal histories.
“It was refreshing to see how passionate he was about sharing his data,” he said.
Among his more unusual steps was to use a 3-D printer to make a life-size model of his tumor. He also had part of his genome and tumor sequenced to reveal the genetic mutation behind his cancer.
The sequencing data led him to discover that a Cambridge company was testing a drug to address some of the effects of the genetic abnormality. He’s since visited the company, Agios Pharmaceuticals, to talk with the researchers who developed the drug.
Noticing that his stomach bothered him during chemotherapy, Keating had his microbiome — the bacteria that live in his gut — studied by a San Francisco company, uBiome, to see how the treatment affected that part of his health. He enrolled in a pathology class at MIT to study his tumor.
When he was looking for a neurosurgeon, his MIT graduate adviser, Neri Oxman, worked with another colleague to seek suggestions. That’s how Keating came to meet Ennio Chiocca, the Brigham neurosurgeon who removed his tumor. Chiocca noticed Keating had an “unusual and highly sophisticated” interest in his treatment. One of the reasons Keating chose Chiocca was because he allowed the procedure to be videotaped.
“The best place to fight cancer is at MIT. The resources, connections and even the insurance has covered it all,” Keating said.
Fresh off radiation therapy, Keating in January went to the White House, where President Obama announced an initiative on precision medicine by the National Institutes of Health to customize treatments for patients, based on their genetics.
Keating’s experiences as a patient prompted him to share his data and to become an advocate for others; he constantly felt he needed more data to make better decisions.
“There’s not really a Google maps for cancer. There are 10 different routes to choose, and they have different end locations, but they also have different challenges along the way,” he said.
Seven months after the surgery, Keating is receiving chemotherapy.
He admits his position as a student at MIT, with the know-how to request and work with data, and the connections to researchers who can make sense of it, make him unique. Other patients will probably have a harder time getting access to their health data.
“What’s different with him — it’s just that when he requested access to his data, the researchers agreed,” said Jason Bobe, director of the Sharing Lab at Icahn School of Medicine at Mt. Sinai and director of the Open Humans project, which promotes giving patients in research trials access to their data.
Still, the fact that Keating has been able to participate in his treatment in this way is an indication of the future, said David Bates, chief innovation officer at the Brigham.
“This is a hint at where we could be going,” Bates said. “The notion that patients with cancer would make the genetic sequences for their cancer publicly available is the kind of thing that could eventually get us to new breakthroughs.”