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February 24, 2017 11:00 PM

Editorial: The medical imperative for data-sharing

Merrill Goozner
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    Goozner

    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.

    His search for clinical trials turned up a small biotech company in Boston developing an inhibitor of one of the mutated genes. He immediately volunteered for its first stage safety trial. The drug failed. Too many volunteers suffered serious side effects. But he had none at all, and his cancer went into remission.

    It remains there today because he still has a supply of the failed drug, which he takes religiously. But his supply runs out in March.

    There are a number of similar inhibitors in development. Some tackle his specific mutation of that gene. Others tackle different mutations or multiple mutations. Because he has been treated with a drug in this group, he doesn't quality for the trials. So he's pursuing compassionate use.

    Olson, who lives in Oregon, is being treated at Oregon Health & Science University where Dr. Brian Druker runs the Knight Cancer Institute.

    Druker is considered one of the fathers of personalized medicine. In the 1990s he helped discover Gleevec, the breakthrough drug that targets the genetic mutation behind chronic myelogenous leukemia.

    Druker also took the stage at HIMSS. “I want a future where I can sit at my computer, figure out how similar patients were treated and learn how it turned out,” he said. “We have enough data in the EHRs to do this research. But every institution has got to figure out how to liberate that data.”

    He's now working with Olson and Intel to build a distributed network of institutions willing to link their records over secure networks—a virtual warehouse that allows remote searching. All it requires is a willingness to share, common standards for transferring data, and adequate patient privacy and data security protections.

    It's all technologically within reach. But most EHR vendors and providers are still putting dams around those records.

    Let's hope the new rules will bust them open and let the data flow

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