Man films own brain surgery
A brave student in the US is fighting back against brain cancer by sharing his medical journey and data with the world.
Massachusetts Institute of Technology doctoral student Steven Keating learned he had a baseball-sized astrocytoma, a low-grade tumour in the left frontal lobe of his brain, last August.
Shortly after being diagnosed, Mr Keating had his own 10-hour surgical operation for which he was awake, filmed at a Boston hospital.
The mechanical engineering PHD candidate told Vox that nurses used their iPhones to capture the important operation.
"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."
Since Mr Keating was diagnosed, he has collected around 75 gigabytes of information. He has a 3D printout of his own brain, his every CT scan and MRI, genetic sequencing data, microbiome sequencing data, blood work, tumor pathology slides, angiograms, as well as copies of all of his health records.
The 26-year-old believes that data can be healing and has shared his big data study through his website and public talks.
"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,” he told Vox.
MR Keating is now advocating for all patients to have full access to their health data, particularly through proposed changes to health regulations in the US.
And have to show how's it made, a tumor selfie video! https://t.co/BskMpPRqAX #50MillionFaces
— Steven Keating (@stevenkeating) April 28, 2015
"I believe full patient data access to clinical records, in simple, standardised, 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."
Mr Keating who finished combined proton radiation and first round chemotherapy in January, is still continuing with chemotherapy rounds.
He has said his data experiment has made the difficult time 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.
He added it would be a huge positive for patients to understand the science behind a brain tumour and to be able to see what it looked like.
News break - May 4
