Biden, Burwell call for collaboration on health data

Vice President Joe Biden calls for more open data to fuel big picture public health efforts, including the administration's "moonshot" bid to cure cancer.

Vice President Joseph Biden. White House photo.

Vice President Joe Biden said that better, more coordinated use of health data can help advance a major White House initiative to fight cancer.

Senior officials including Vice President Joe Biden pushed the idea that data is going to help solve pressing public health problems. Biden, Secretary of the Department of Health and Human Services Sylvia Burwell and National Coordinator for Health Information Technology Karen DeSalvo appealed to developers and researchers to collaborate on data initiatives at the seventh annual Health Datapalooza, in Washington, D.C.

"Data and tech, when combined, can have incredible impact on saving people's lives and improving health," said Biden. "You know what this significant access to data has done so far, but I think we've only scratched the surface."

In speaking with national and medical leaders around the world, Biden continued, the potential utility of big data is a point of consensus. He also emphasized the necessity in sharing data, lamenting the disparate, siloed information that leads to "unnecessary duplication of failed efforts and wasted time and money."

He suggested the creation of a privacy-protected, national network accessible to physicians and patients as a possible solution. One of the biggest obstacles, Biden said, is the lack of standardization in "how we collect data, how we process data and how we label data."

"Not to oversimplify it, but in some places, doctors might call it a broken leg, and others might call it a fractured leg," he said. "That makes it hard for even the most powerful computers to search, aggregate and process the data."

He also said that lack of interoperability among different health IT systems  is a major obstacle. He recalled the difficulty his late son, Beau, faced in receiving care in his fight against brain cancer because different clinics' systems hindered data sharing.

"We have to eliminate the technical roadblocks patients face trying to get their own health records," he said. Biden also said he wants to see data unleashed as a tool in his National Cancer Moonshot Initiative.

Burwell and DeSalvo announced new health data challenges on day one of the conference.

Burwell announced that HHS teamed up with AARP and design agency Mad*Pow to create the Bill You Can Understand Challenge, a contest to create a simple, easy-to-understand medical bill.

"Investing in people's health works best when they invest in it themselves," said Burwell. "But one of the biggest concerns I hear when I talk to people [about health insurance] is they feel confused and disconnected from their care… It's difficult for anyone."

The deadline for submissions is August 10, and the winning designs will receive cash prizes of $5,000 and will be announced in September.

DeSalvo announced two cooperative, interoperability awards, the High Impact Pilot and the Standards Exploration Awards, intended to advance the sharing of health care data around the use of national, common standards. 

The goal of the programs is to transition to "where health information becomes ubiquitously and securely available" because health care customers want their data to be shared, said DeSalvo. "We have to work quickly towards a more person-centered system to where access to data is the norm, not the exception."

Up to seven awards for the High Impact Pilot (ranging between $100,000 and $500,000 each) and up to five for the Standards Exploration Awards (ranging between $50,000 and $100,000 each) are expected to be given. The deadline for applications is July 8.DeSalvo also announced the Move Health Data Forward Challenge to create a data-sharing application programming interface and to promote "the development of innovative technology solutions that better enable consumers to authorize the movement of their health data." This challenge offers an overall prize pool of $250,000, and a maximum prize of $75,000 per winning participant.