A Case for Open Patient Records

After a voluntary MRI reveals an abnormality in his brain, one MIT grad student becomes an advocate for open medical records — a critical element to engaging patients as partners in care.


November 2015

When Steven Keating walked on stage carrying a 3D-printed model of his skull and brain tumor, everyone was eager to hear what the advocate for open-sourced medical records had to say.

A graduate student at Massachusetts Institute of Technology, Keating was the keynote speaker at the ONC Consumer Health Summit 2015, held in October in Washington, D.C. He was there to talk about his experience navigating the notoriously cumbersome medical records system as a brain cancer patient.

Research Scan

Keating found out he had brain cancer rather serendipitously.

In 2007, the self-proclaimed science geek volunteered for an academic brain MRI, you know, for fun. Always curious, Keating asked the researchers for the raw data of the scan so he could see his brain for himself.

When the researchers gave Keating the images, they informed him that he had a small abnormality on his left frontal lobe, near his brain’s olfactory bulb, but said it wasn’t anything to worry about — many people have abnormalities.
A bit anxious about the finding, Keating asked the researchers what he should do about it. They suggested he have a follow-up MRI in a few years, which he did in 2010. The scan showed that the abnormality remained unchanged, and doctors reiterated that the spot probably wasn’t a concern.

Phantom Scent

Then in July 2014, Keating began smelling a faint vinegar scent for a few seconds every day. While most people would have shrugged it off, Keating grew worried because he knew he had an abnormality near his brain’s smell center. He pushed his doctors to conduct another MRI, which they scheduled about a month out.

When the scan was finally completed, it revealed that Keating’s abnormality had ballooned to consume 10 percent of his brain.

Soon, Keating was in the operating room for 10 hours of awake brain surgery to remove the baseball-sized tumor. Surgeons kept Keating awake for the surgery to ensure they didn’t accidently disrupt his brain’s language center.

The surgery was successful, and Keating was back to MIT within a week.

Record Collection

Keating attributes his successful diagnosis and treatment in part to his own curiosity.

In addition to obtaining his initial MRI, Keating collected as much of his personal health data as possible, including lab results, radiology reports and images, a video of his surgery, and even microscopic shavings of his tumor tissue.
Unlike most patients, Keating has the background to understand medical terminology and knows which records to request from his physicians. Still, accessing his medical data wasn’t easy. He had to dig through hundreds of pages of reports and stacks of CDs to find the information.

“The most interesting thing that I learned [from this experience was] that I had the least access to my information,” Keating said during the conference.

Life Saver

Keating contends that having access to his health data not only saved his life but also made him a better patient. The information helped him understand his condition better and make more informed decisions about his care.

Keating advocates that all patients should have direct access to their medical records and should be able to share their data easily with others, including friends, family, and other physicians. Keating himself has published much of his own health data, including his MRIs, on his website for the world to see.

“We need patients as partners in health care,” Keating said. And that requires giving patients control of their medical data.

By Jenny Jones, Imaging 3.0 Content Specialist

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