When MIT doctoral student, Steven Keating, was diagnosed with a brain tumour last year, he not doubt went through the usual amount of soul searching any human being would when faced with such devastating news. But the incredibly brave scientist in him managed to turn that fear into something much more positive - curiosity.
Since he discovered that he had a low-grade astrocytoma - a localised and slow-growing form of tumour - growing in the left frontal lobe of his brain, Keating has been treating the entire ordeal as one big science experiment, gathering every piece of footage, image, scan, and health report on himself that he could in order to assist researchers in better understanding how this particular disease progresses.
And according to Julia Belluz at Vox, he ended up with a whole lot of data on himself:
"[Keating] 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, tumour 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."
Also included was footage recorded of the 10-hour surgical procedure that ultimately saw his tumour removed and his life saved. He's cut it down to a somewhat more digestible - if incredibly graphic - two-minute video, which you can watch above. He said two nurses were also filming on their phones, which is how the audio was recorded.
"Data can be healing," Keating told Belluz. "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."
As often occurs in certain types of brain surgery, Keating was kept awake, but sedated and anaesthetised throughout the whole process, so the surgeons could get him to speak as they poked and prodded around the language centre of the brain. The procedure ended up very successful, and Keating was out of the hospital in two days, and back on campus in just over a week.
Talking about his quest for data, Keating says it's not just cancer researchers he wants to help out - he says the public should be made more aware of what goes on during these types of procedures, which will assist them in being better informed when their government proposes certain changes to health regulations. And, of course, the more knowledge you have of something, the less scared of it you tend to be. "For patients to understand what is the science behind this, what does my brain tumour look like, what is the data here - it's a huge positive," he said.
He gave a talk late last year to cancer researchers at the Koch Institute in the US, which you can watch below. And you can head to his website to rifle through the incredible wealth of information he's collected about his brain surgery.
It's a bit of an understatement, but we need more people like Steven Keating.