Bryce Olson, a 47-year-old prostate cancer survivor with short spiky hair, dark glasses and the pallor of someone who has spent too many hours staring at computer screens, has become an evangelist for unlocking medical records through data-sharing and interoperability.
The Intel marketing executive wants to link medical records from across the U.S. and the world into a vast virtual warehouse for research. It's key, he says, to achieving research breakthroughs for cancers like his and the other diseases that are characterized by genetic mutations.
But to achieve the dream of personalized medicine, researchers will need to scan millions of records to find people with similar genetic malfunctions, Olson told attendees at the Healthcare Information and Management Systems Society trade show in Orlando, Fla., last week. Those records may also reveal what worked and what didn't after being treated for their diseases.
“Data-sharing isn't the answer for everything, but data-hoarding is the answer to nothing,” he told me after his presentation.
His story is a good example of the huge stakes in the coming battle to transform the past decade's public investment in electronic health records into a useful tool for improving healthcare practice and expediting medical research.
The federal government, which has canceled the final round of “meaningful use” requirements, should heed his story as it moves to establish the new rules for interoperability and data-sharing called for in the 21st Century Cures Act.
In the fall of 2014, Olson was diagnosed with an aggressive form of prostate cancer. Just a few months after surgery, he was informed it had spread to nearby bones. His prognosis was grim.
Undeterred, he had his cancerous tissue's genome sequenced. He discovered he had rare mutations of two genes, one that promoted cell growth and another that kept it in check. It was as if his body had put a brick on the accelerator and drained the braking system of fluid.