After Joe Biden left office in 2017, he pledged to work to lower barriers to care for cancer patients by pressing researchers to share their data. It was a personal mission—in 2015, his son Beau died from an aggressive brain tumor.
The former vice president furthered that mission when his Biden Cancer Initiative—the nonprofit he started with his wife, Dr. Jill Biden—partnered with WeWork to launch Communication Hubs. WeWork provides the physical space for researchers to collaborate on cancer including prevention, detection, diagnosis, research, and care.
Biden spoke about the need for an interconnected approach to fighting cancer to an audience of researchers, patients, caretakers, and survivors at WeWork 85 Broad St in New York City on Tuesday.
“We should be able to say that there’s widespread sharing of research data, and that medical records are easier and cheaper to get in a way that patients can share them for other research, but we can’t say that,” he said. “We should be able to say that your doctor in Missoula, Montana, has all the tools needed to treat whichever cancer you may have just as a doctor at [New York’s] Memorial Sloan Kettering Cancer Center does… but we can’t.”
According to BCI, a lack of open data sharing and aggregation stands in the way of patient access to information and care. Patient-led sharing, in which consumers are able to directly retrieve their medical data from providers, allows them to effectively improve their own care. But it’s not easy. Privacy protection, for one, is a primary concern.
Biden experienced this first-hand when he tried to obtain Beau’s cancer genome sequencing—a view of the unique mutations present in cancer tissue—without success.
“When cancer patients’ data is aggregated, it holds the promise to improve care for more patients so their treatment can be informed by a collective experience of cancer, rather than by just cases that individual doctors have seen,” Biden said. “But patients are forced to jump through hoops on top of fighting for their lives to receive their own medical data records.”
Biden outlined three ways to improve data sharing on which BCI is already at work.
1. Encourage cancer centers to go beyond the bare minimum when providing patients with their data. “Cancer centers need to step up,” he said. “They should provide easy, transparent ways for patients to request and obtain their medical records in whatever form they wish.” Academic science still rewards individual accomplishments over team discoveries, leading to a culture that deters the wider sharing of results.
BCI identifies incentives to support data sharing across academia, cancer centers, and publishers. It has compiled more than 10 working group members nationwide—from industry-leading cancer centers to nonprofit organizations—to develop new standards,.
“To all you cancer center CEOs out there,” he said, “please join us.”
2. Promote patient education and empowerment as it involves their own data. The goal is simple, he said: “Enable cancer patients everywhere to share their information samples with researchers, anywhere and everywhere.”
BCI has partnered with Count Me In, a new research-based nonprofit with a goal to “engage” more than 100,000 patients living with all major cancer types. This engagement, in part, enables patients to share their clinical information to help researchers detect patterns in cancer progression and response to treatment across a large sample of people.
But this is where privacy comes into play: The Health Insurance Portability and Accountability Act (HIPAA) limits information sharing to a degree, even though a reported 74 percent of consumers trust hospitals with health-care data security. Count Me In aims to resolve this discrepancy.
Apple is on board, too: In 2018, the technology company announced a partnership with 13 major health-care systems, including Johns Hopkins, that allows Apple to download patients’ medical data onto its devices with patient permission.
3. Capture patient data more consistently across cancer centers. When Beau was undergoing treatment, he took part in a clinical trial at a cancer center where he was not receiving his regular treatment. The most efficient way to transmit records between centers, said Biden, was to personally take a picture of the documentation and transmit it via cellphone.
The better alternative is to develop a set of cancer-specific data elements that can be incorporated into electronic health records across cancer centers. Such elements could improve what doctors can learn across patient populations.
Intermountain Healthcare—a Utah-based system of 23 hospitals, 170 clinics, and a medical group with close to 2,300 physicians—will be the first cancer center to pilot these standards starting in June. Others are already eager to sign up.
“We believe that we can make progress in these areas because of the incredible response we’ve seen thus far,” said Biden. “We thought it’d be a much harder pull, but it’s not. People feel it. They feel the movement to make progress. They feel the urgency of now. It gives them hope.”
