When MIT doctoral student Steven Keating got a terrifying diagnosis of brain cancer last year, he decided it was a perfect opportunity to conduct a science experiment — on himself.



Last summer, the 26-year-old learned he had astrocytoma, a low-grade tumor in the left frontal lobe of his brain. In the months since, he has collected some 75 gigabytes of information: a 3D printout of his own brain, genetic sequencing data, microbiome sequencing data, his every CT scan and MRI, blood work, tumor pathology slides, angiograms, and copies of all of his health records. He also took his own stool samples during his cancer treatment in order to study how chemotherapy changed his gut flora.

In other words, Keating has turned every aspect of his cancer experience into a big data study. He's also sharing all of his findings in public talks or through his website, or is working with researchers to publish on them — and he wants others to do the same.

"Data can be healing," the mechanical engineering PHD candidate says. "To me, having access to the data allows for an understanding of what’s happening to you. If you can share that data, potentially researchers and other patients can use it to understand what’s going to happen to them."

A former film student, Keating also had his own brain surgery videotaped, a 10-hour awake operation at Brigham and Women’s in Boston. "I asked for the surgery to be recorded," he explains, "and there were a couple of nurses in the room who used their iPhones and recorded it, too, so the audio was all done through personal phones."





What's it like to watch your own brain surgery? "Pretty crazy," Keating says. Of course, he adds, it was instructive, too. "If I didn't see that video I'd have no idea what they did to me. Patients have a right to understand what people are doing to you — especially when it involves something very sensitive like the brain."

For now, as he works on getting through his treatments and PhD, Keating is also advocating for every patient to have full access to their health data, particularly through proposed changes in health regulations here. "I believe full patient data access to clinical records, in simple, standardized, and digital forms through an open API, is critically important," he explains. "It needs to have low barriers, with access to full raw data, and easy exports to patients and third-party developers."



At the very least, his science experiment is part of what's made a difficult experience more bearable. "If you view things as a curious problem instead of a scary problem it can make a huge difference, especially when we’re talking about neural issues like brain surgery," he says.

"For patients to understand what is the science behind this, what does my brain tumor look like, what is the data here — it’s a huge positive."