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Steven Keating's fight against cancer and his call for Open Data in healthcare

Shared by Gemma Tria on 2024-10-23 10:36

About the solution

Steven Keating's advocacy for open patient data began with his cancer diagnosis. In 2007, during a volunteer brain study at Queen's University, an MRI revealed a small abnormality in his left frontal lobe, initially deemed insignificant. However, in 2014, while at MIT, he started noticing a faint vinegar smell for several seconds each day. Suspecting a link to the earlier abnormality near the brain's smell center, he sought further medical attention. An MRI showed that the abnormality had grown into a baseball-sized tumor—a low-grade glioma—requiring immediate surgery. To safeguard his cognitive functions, the surgery was performed with him awake and engaging with the medical team, and he requested that the entire 10-hour procedure be recorded.
True to his scientific mindset, Keating delved into his diagnosis by studying his MRI scans, watching the surgery footage, and creating a 3D-printed model of his tumor. This model sparked a collaboration between MIT Media Lab and Harvard University to develop advanced 3D-printed medical models, illustrating how his scientific approach not only helped him manage his illness but also inspired innovation in the medical field.
His advocacy for open patient data was rooted in his belief that access to medical information is essential for effective personal health management. He collected over 200 gigabytes of his medical data—including MRI scans, genetic sequencing, and surgery footage—and defended patients' rights to control their health data. He believed this access could facilitate better personal care, enable second opinions, and create valuable opportunities for collaboration in medical research. His story gained widespread attention, especially after being featured in The New York Times and his TEDx Talk, where he emphasized the importance of transparency in healthcare. Keating also served on the Federal Precision Medicine Task Force, advocating for policies that would simplify patients' access to their medical data. His vision was a future where patients could easily share their information with doctors and researchers, facilitating breakthroughs in treatments for conditions like brain cancer.
Keating joined the Open Human Foundation to assist other patients, collaborating with hospitals, researchers, and advocacy groups to promote open and collaborative healthcare systems. Even after being diagnosed with glioblastoma, an aggressive brain cancer, Keating continued to fight for patient data rights. He participated in experimental treatments and advocated for accessible healthcare data until his passing in 2019. His legacy lives on through his advocacy for accessible patient data, exemplifying how curiosity, science, and shared knowledge can transform healthcare.
Adapted from:
https://www.nytimes.com/2015/04/01/technology/the-healing-power-of-your-...
https://news.mit.edu/2019/celebrating-curious-mind-steven-keating-0722

https://www.youtube.com/watch?v=U5SafKJgqPM

This solution shall not include mention to the use of drugs, chemicals or biologicals (including food); invasive devices; offensive, commercial or inherently dangerous content. This solution was not medically validated. Proceed with caution! If you have any doubts, please consult with a health professional.

DISCLAIMER: This story was written by someone who is not the author of the solution, therefore please be advised that, although it was written with the utmost respect for the innovation and the innovator, there can be some incorrect statements. If you find any errors please contact the patient Innovation team via info@patient-innovation.com

About the author

Steven Keating, born in 1988, was a graduate student at MIT when he was diagnosed with a low-grade glioma in 2014. Originally from Canada, he studied mechanical engineering and became a passionate advocate for open patient data. Keating passed away in 2019 and is survived by his family, who created a memorial website to honor his legacy and curiosity-driven life:
https://stevenkeating.ca/

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