In a moving speech to the Health Datapalooza conference in Washington, D.C., Vice President Joe Biden tied the health data liberation movement to both the cancer moonshot effort he is charged with leading as well as his own son’s battle with cancer. “Today most cancer centers don’t have an easy way or motivation to share data,” he said. “We have to change this.”
Biden welled up when speaking about his son, Beau Biden, who died in 2015 from brain cancer. He spoke passionately about both the current roadblocks to sharing data and the great potential to have significant breakthroughs in cancer research in the next few years.
He used some details from the experience of Beau Biden’s treatment to express disappointment with the state of interoperability the industry has achieved after the government spent $35 billion to incentivize the digitization of health record systems.
He said it was extremely frustrating that the imaging data couldn’t be sent from Walter Reed Hospital in Washington, D.C., to MD Anderson electronically because they were on different systems, and disks had to be sent back and forth. When the administration authorized that funding, Biden said, “we didn’t realize five companies would create their own silos. What the heck are we doing?”
Biden spoke about the administration’s effort to open up 2,100 Medicare data sets, which have been downloaded by researchers and others 4 million times. That effort, he said, is “based on the simple proposition that data and technology can have an incredible impact on saving people’s lives. We should open up more of the data held by federal government to drive progress.”
Biden also drew applause when he made a strong argument that access to scientific literature and data that is paid for by public funds must be freely available to the public.
Cancer research has reached an inflection point, he said. Big data captures the complexities, the challenges and possibilities of curing cancer. There is an enormous amount of data being created, but it is not readily available, he said. Imagine if pathologies, family history, and treatment outcomes information was accessible, he said, while noting that he has found the politics of cancer more challenging than the politics of the Catholic church, unions or regular politics.
He asked the audience of app developers and data scientists to apply their expertise to the fight against cancer. He said we need an open national network to safely access de-identified data and turn data into knowledge. “I desperately need your input. I promise you I’ll do everything in my power to make sure we are working together to share more of this data.”