Steven Keating is not exactly daunted by complicated problems. A PhD student at the MIT Media Lab focused on 3D printing and synthetic biology, he describes himself as a “huge dork.” As a teen he was into high-altitude balloons and DIY Tesla coils; as an adult, his hacker-maker mentality would help save his life. In 2014 Keating was diagnosed with a baseball-sized brain tumor and told to schedule surgery immediately. Scrambling to find the best surgeon, he soon found that the quickest way to share his brain scans and data would be to do it himself. He’d already built a simple website to share his medical images with family and friends; now, he began sending it to doctors as well. A huge chunk of his brain was about to be sliced out, and he figured that taking charge of his own data would be his best chance at preserving his mind.
With Keating’s rare cancer, as with many brain tumors, there is no one recipe for treatment. After surgery he was faced with a series of momentous decisions, such as choosing among X-ray radiation, proton beam radiation, chemo, and combinations thereof. He wanted to know as much as possible about his own tumor and his own body—which meant getting his hands on more data. The researchers and doctors he talked to were eager to help him, but that wasn’t always enough.
His surgical team at Brigham and Women’s Hospital recorded the 10-hour procedure and gave him the video, so that was fairly simple. The scans of his brain arrived on dozens of CDs, which he painstakingly added to his online data trove.
His collection grew to include a 40-terapixel image of the tumor tissue, his genome sequence, pre- and post-surgical MRIs, microbiome results before and after chemotherapy, and the high-res video CT scan of his patched-up skull—more than 200 GB, all of which he made public.
But the pathology report describing his tumor cells was just three sentences. Before making a decision on his treatment, he wanted to know more. He wanted to see the tissue himself, but he couldn’t; as part of the paperwork, he’d signed away the rights. “They own all the tumor, for research purposes,” he says. “I didn’t have access to it.”
That didn’t stop him. As an MIT student, he could enroll in a pathology class at Harvard taught by Brigham staff. He did, and for his final project he analyzed his own brain, treating the slides with stains specific to his type of cancer and exploring more of the huge chunk of tissue. Based on what he found, he suggested slight modifications to the radiation treatment he was about to get. (He says the radiologists took it seriously, but eventually decided against it for safety reasons.)
Legal gray zones created other problems. Keating’s tumor’s genome was fully sequenced (cancers have their own, corrupted DNA sequences), but the researchers can’t give him that information. The sequencing was not performed on a device approved for commercial use, so federal regulations prohibit the data’s release. “It’s insane,” he says. “I’m giving you part of my brain, and you won’t even share the information with me?” The institute eventually paid to have his tumor resequenced for him.
“It’s been shocking to realize that the patient is put last,” he says. Keating started giving talks about his data-collecting adventure, and sometimes by chance a doctor from Brigham and Women’s or its affiliates is in the audience. Right there in the auditorium, they can quickly call up all of Keating’s records in a simple interactive format, even parts like doctor’s notes that he cannot access. It drives him crazy.
Keating has endured a lot of medicine, but he’s not finished. He’s been transformed into a crusader for open data, petitioning the federal government to require a standardized portal so that people can easily access and share their information.
“Data can have healing power,” he says. “It has been an amazing experience to understand what is happening to me.”
THERE’S MORE! TAP THE IMAGE TO GO TO THE MAIN STORY
