Vice President Joe Biden implored attendees of the Health Datapalooza on Monday to join in his effort to make cancer data more accessible and usable.
“We really need you,” Biden said. “For the same reasons we opened up all the data we could in the Federal government.”
Six years ago, the White House decide to release large amounts of government data to the public, hoping that citizens would be able to make use of it in ways the government could not. Biden noted that some of the health data allowed hospitals, doctors, and ambulance services to make better decisions on where to send patients.
“Why can’t we do the same thing in the battle against cancer?” Biden said. “Big data captures the big picture, the opportunities, the challenges in fighting cancer.”
He laid out three essential changes that had to happen if the “cancer moon shot” is to succeed.
“First we have to generate enough data to qualify as big data,” Biden said.
This includes standardizing the way the data is collected, processed, and labeled. He noted that when he and President Obama decided to devote $35 billion to health standardization efforts, private interest got in the way.
“We didn’t realize five different companies would come along and create their own silos,” Biden said.
He remembered one of his son Beau Biden’s last cancer treatments, which included injecting his brain tumor with a virus and continuous MRI monitoring. Yet the information gathered from this treatment was not formatted in a way that his son’s primary doctor could use. Biden was forced to use his own influence and that of his son-in-law, a prestigious surgeon, to get results.
“It took all of that and more to get it put on a disk and flown down to [his doctor],” Biden said. He wondered how much more impossible things would have been if he hadn’t been an influential man. (Beau Biden died in May 2015 at age 46.)
“The second thing we have to do is we have to share the data,” Biden continued. “Researchers are not incentivized to share data.”
Biden found that for an oncologist not affiliated with a hospital, it would cost $30,000 to $40,000 to get access to the publications containing pertinent cancer research. With this kind of monetary obstacle in the way, doctors are unable to collaborate on the latest studies and treatments.
“There’s cancer politics, there’s church politics, there’s labor politics, and there’s politics, and they’re difficult in that order,” he joked.
Finally, Biden said, “We have to eliminate the technical roadblocks that patients face to get their own records.”
The vice president said that other countries are already eager to work to collaborate on this issue. He told the story of the most recent Nuclear Security Summit of approximately 50 countries, in which Obama began by saying, “I know a lot of you want to talk to Joe about fighting cancer.”
In fact, Biden was approached by the prime minister of Japan, the president of South Korea, and many others about what they can do to help.
“This is not the work of government alone,” Biden cautioned. “There is a growing recognition that collaboration is a big part.”
He also affirmed the belief that researchers and medical professionals could do a decade’s worth of work on cancer in just five years, and that this work could have made a real difference for his own family.
“If this had been five years earlier or five years later, circumstances would either be more difficult, or, maybe, I would be standing here with my boy,” Biden said.
“You’re the best; you’re really the best, and I desperately need your input,” Biden told the audience. “Please use your talents. Tell us how, tell me how, we can do more.”