WASHINGTON — Joe Biden talks a lot about the potential for “big data” to accelerate the fight against cancer. On Friday, he spent time learning about a model of that approach that’s already being put to work in Utah.
The star of the show in Salt Lake City, where the vice president led a panel discussion for his cancer “moonshot” effort at the University of Utah’s Huntsman Cancer Institute, was the Utah Population Database. The database houses genealogical and historical health records for upwards of 8 million people, a one-of-a-kind medical resource.
About 200 active medical research projects are currently using the data stored there, the vice president said.
The information held in the Utah database “can hold the keys to certain therapies,” Biden said. “Tapping this treasure trove seems to be vital to make some exponential progress toward dealing with cancer.”
Biden’s latest panel discussion for his cancer initiative featured some high-profile Republicans, including former Utah Governor Jon Huntsman and Senator Orrin Hatch — highlighting the bipartisan potential that he sees in the effort to speed the pace of cancer research.
Utah researchers explained to Biden how the database had already helped them make breakthroughs in cancer treatments. The family history and genetic data housed in it allowed them to identify a colon cancer gene, which has helped them identify people at risk and screen them, said Mary Beckerle, the institute’s CEO and director.
When some people who adhered to the screening guidance, based on what had been learned from the database, still got cancer, researchers then took a closer look at them.
“We would ask in the clinic, ‘Why?’” Beckerle said.
They found the cancer had festered in parts of the colon that weren’t being properly scrutinized.
“That’s what people have to understand,” Biden said, “about all the data that can be yielded from being able to access this material.”
A quick search yields dozens of studies that used the Utah Population Database at least in part to further their research — probes into testicular, breast, and pediatric cancers, as well as broad studies of cancer risks in extended families.
“What you really want to know is who’s affected and who’s not affected,” said Dr. Vivian Lee, dean of the University of Utah’s medical school. The database “is like a magnifying glass in figuring out the genetics.”
The database has its roots in the Mormon Church, as the New York Times reported in 2004. The church had long kept meticulous records, and many members stayed in Utah for generations after much of the congregation moved there in the mid-19th century and flourished.
In the 1970s, University of Utah researchers started to combine those church records and the family history they contained with other data sources such as medical records. Research using that data was soon underway and has contributed to some of the findings that Beckerle and her colleagues touted.
The database has been on Biden’s radar for some time. Huntsman came to visit him shortly after President Obama announced in his State of the Union address that the vice president would be in charge of a federal cancer task force, and the former Utah governor told Biden about what it had done and could do. Biden has referenced the database several times in the half-dozen public meetings he has held in the last six weeks.
Eventually, Friday’s conversation turned to whether the database could be emulated or expanded.
“It would be wonderful if we had some sort of way of expanding this exponentially,” Hatch said. “These folks are really on the cutting edge of everything.”
There was a bit of a divide among the attendees, the kind of struggle for consensus that Biden often laments when he talks about cancer politics. Some, like Lee, thought the Utah database should be expanded. Others worried that doing that would risk undermining the innovative data efforts being pursued by other institutions.
One attendee, Charles Sorenson, president and CEO of Intermountain Healthcare, said the focus should be on the interoperability between different databases and electronic medical records, which would allow the information to be more easily shared.
Those are challenges and questions that Biden openly acknowledged he doesn’t have the solution to yet. But the one thing he seemed sure of, as he has said throughout the moonshot tour, is that data will be critical to whatever plan the administration ultimately puts forward.
It marks a sea change, the vice president likes to point out. “Four or five years ago, people didn’t want to talk to me about this,” he said.