Brain Cancer Patient: Can Access to Medical Data Save Lives?

Posted by Brigham and Women's Hospital May 24, 2016

The MRI image above shows a tumor in Steven Keating’s frontal left lobe.

The MRI image above shows a tumor in Steven Keating’s frontal left lobe.

After participating in a brain research study, Steven Keating avidly collected and examined his personal medical data. Steven’s curiosity ultimately helped to identify his own brain tumor, a glioma, which was removed in the Advanced Multimodality Image Guided Operating Suite (AMIGO) at Brigham and Women’s Hospital in 2014.  Based on this experience, Steven is now a vocal advocate of providing patients with open access to their medical information. In this video, Steven shares the incredible story of how his life-long curiosity helped identify his brain tumor – and how curiosity about medical data also can help others.

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Patient Turned Researcher Helps Advance Understanding of Brain Tumors

Posted by Brigham and Women's Hospital April 13, 2015

Steven Keating (right) holds a 3-D printed model of his brain.

Interested in seeing images of his brain, Steven Keating, currently a graduate student at the MIT Media Lab, volunteered for a research study while attending school in Canada in 2007. When researchers returned his brain scans, they delivered some startling news.

“The researchers told me I had an abnormality near the smell center in my brain, but that lots of people have abnormalities and I shouldn’t be alarmed,” says Steven. However, as a precaution, researchers advised Steven to get his brain re-scanned in a few years.

Steven’s next set of brain scans, performed in 2010, showed no changes. But in July 2014, he started smelling a strange vinegar scent for about 30 seconds each day. He immediately had his brain scanned and learned that the strange smell was associated with small seizures due to the presence of a brain tumor called a glioma. Steven’s glioma had grown to the size of a baseball.

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