Curiosity may have killed the cat, but it saved an engineer. Steven Keating is a PhD candidate studying mechanical engineering and synthetic biology at MIT who discovered his own brain tumor. His work focuses on 3-D printing, but his innate curiosity and love of data have extended beyond the lab and into his personal life. Back in 2007, he volunteered to participate in a research study that involved a brain scan, and he asked for the raw data back just for fun. The scan revealed a small abnormality in the smell center of his brain. He was told that it was probably benign, and was especially told not to worry when a scan three years later showed no growth. However, last July he started to experience a strange phantom vinegar smell, so he requested an MRI scan. The new scan revealed that the abnormality had grown into a baseball-sized tumor that had to be removed as soon as possible.
Keating had brain surgery a month later and is now undergoing proton radiation and chemotherapy treatment. He says that life is a wild ride that can either be scary or exciting. He sees his brain cancer as a scientific problem, and he is personally collecting the data to solve it. His experience has led him to become a strong advocate for open health data. He had the surgery videotaped, asked for his genomes sequenced, and studied microscopy slides of the tumor tissue and raw data from his scans. He even printed 3D copies of his tumor. His brain scans and tumor model are publicly available on his personal website, and he has been meeting with government and hospital officials and leaders to push to enable patients to collect, understand, and share their personal health data.
We need standards, low barriers, and a right to access.