Biden appeals for open health data help on Cancer Moonshot

Vice President Joe Biden pleaded Monday with the open health data community to lend its expertise to the national fight against cancer he’s heading.

Promoting his Cancer Moonshot initiative — a $1 billion White House effort to identify new ways to prevent, diagnose and treat cancer, launched during February’s State of the Union — Biden implored those gathered at the 2016 Health Datapalooza to drive the same innovation seen in the past five years around the opening and sharing of health data to beat cancer. 

“Using publicly available Medicare data, innovators like you in this room have launched companies that deliver information about hospital and doctor performance. Emergency medicine doctors are using information on ER visits, wait times and outcomes to help create an app to guide ambulances, and even the public, to the best places for emergency care,” Biden said.

“Well folks — why can’t we do the same kind of thing in the battle against cancer?” he questioned. “There’s a load and an enormous amount of data out there, but not readily available. Imagine what you could do to help in the fight against cancer if you had access to the millions of cancer pathologies, genomic sequences, family histories and treatment outcomes.”

Now in its seventh year, the Health Datapalooza — founded by former Department of Health and Human Services and U.S. Chief Technology Officer Todd Park — is an annual gathering of innovators, officials and entrepreneurs from across government, academia, the private sector, the health care world and nonprofits to promote progress around open health data. 

Biden acknowledged that the fight against cancer is making progress — cancer-related deaths are down 23 percent over the last 21 years — and that the world has reached an inflection point in treating the disease. Science and medicine have reached a point never seen before, he said. But with thousands still dying each day, Biden said “we haven’t done nearly enough.”

“We have to ask ourselves, ‘Why are we not progressing more rapidly?'” It’s literally “a matter of life and death,” he said, acknowledging that had it been five years earlier or five years later when his own son Beau, who died of brain cancer in May 2015, was diagnosed, “the circumstance would have either been more difficult — or maybe I’d be standing here with my boy.”  

It takes more than the work of the government to accomplish what the moonshot aims at — a “quantum leap” in the fight against cancer, making 10-years’ progress in just five years’ time. And that’s going to take all of the collaboration and human power, combined with technology, that can be mustered, he said. 

He pondered the power of supercomputers and big data as one way to gain better insight into how cancer works and how it can be defeated.

“Big data captures the big picture — the complexity, the challenges, and the opportunities in treating cancer,” Biden said. 

The sharing of data is perhaps even more critical, Biden said. 

“We have to share it in order to aggregate large amounts of data that can be used to find solutions,” he said. “Today, different technology systems can’t talk to each other. Most major cancer centers don’t have an easy way — and in many cases [lack the] the motivation — to share data, including patients’ records, test results, family history, and treatment responses. 

“We’ve got to change this.”

Sharing is also necessary when it comes to research, Biden said, criticizing institutions for building silos around their scientific insights into cancer with outrageous price tags. It can cost unaffiliated physicians more than $30,000 per year just to get the latest published research, Biden cited.

“Researchers need to share data in order to move discoveries more rapidly,” he said. “Published research is hidden behind paywalls … we need to make the data behind published findings available [to the public] as soon as it’s published.”

Despite the great advances around open data sharing in the medical world, the vice president said “we’re only scratching the surface.”

“You all stepped up. You developed everything, apps to track your blood pressure and how you sleep. We need the same use of your talents and expertise in the fight against cancer,” Biden said.

“Imagine what we can do if we have all of you engaged, even on the periphery, of this Cancer Moonshot.”