Big dreams need big data. And former Vice President Joe Biden believes his National Cancer Moonshot initiative needs lots of it — shared in ways like never before — to find a cure.
The initiative aims to accelerate research efforts and break down barriers to progress by enhancing data access and facilitating collaborations with researchers, doctors, philanthropies, patients and patient advocates, and biotechnology and pharmaceutical companies.
In response to a call to action from President Barack Obama in his final State of the Union Address, Biden — whose son, former Delaware Attorney General Beau Biden, lost his battle with brain cancer in 2015 at age 46 — stepped up to spearhead head this new, national effort to end cancer. Its mission: to achieve a decades' worth of progress in five years in the prevention, diagnosis and treatment of cancer.
That's quite a lofty goal for a health problem that continues to grow at an alarming rate, primarily due to the growth and aging of the population.
According to the American Cancer Society, it is estimated that in the United States 600,920 people — or 1,650 people per day — will die from cancer in 2017; another 1,688,780 new cases will be diagnosed. Except for heart disease, cancer is the second most common cause of death in the United States, exceeded only by heart disease. Worldwide, cancer accounts for 1 in every 7 deaths, said the ACA, and in 2030 about 21.6 million new cancer cases and 13 million cancer deaths are expected to occur.
But the first big hurdle may be more down to Earth: funding.
In December 2016 Congress passed the 21st Century Cures Act under President Barack Obama. The bill provides for $4.8 billion in new funding for the National Institutes of Health over the next decade. Of that, $1.8 billion is earmarked for Cancer Moonshot. But Trump's proposal in March to cut the National Institutes of Health's budget by 20 percent, from $31.8 billion to $26 billion, would mean a massive $1 billion cut to the National Cancer Institute, which helps fund Cancer Moonshot research as well as the 21st Century Cures Act.
"These cuts are reckless and shocking at a time of incredible scientific opportunities," says Jon Retzlaff, chief policy officer at the American Association for Cancer Research. "The Cancer Moonshot would be cut to the bone."
The silver lining, he adds, is that Congress is strongly criticizing this proposal. "They're saying that it isn't going to happen," says Retzlaff. "And Congress is very supportive of Cancer Moonshot."
Biden's plan to improve data standards and break down the "silos" — the medical community, he claims, is infamous for having silos of data that prevent using it to predict disease causes and progressions — is key. In his 2016 speech at the American Association for Cancer Research's annual conference in New Orleans, the former vice president claimed that siloed data slows a cure. He believes that improved data sharing and collaboration between government, academia, nonprofits and the private sector will accelerate cancer research, and many believe he will bring the right people to the table.
"Previously, we've lacked a leader," says David Agus, a professor at the University of Southern California and author of the End of Illness. "But Biden elevates us."
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In January, Biden outlined his moonshot plan, saying the initiative will focus on improving data standards to help researchers, work with community care organizations to improve access to care, and push pharmaceutical companies, insurance providers and biotech companies to ensure patients can afford treatments.
Inspired by Biden's push for progress, biotech firm Foundation Medicine signed up early on to share a small part of its data. The firm is contributing 18,000 genomic profiles to the National Cancer Institute's Genomic Data Commons portal, a public database for cancer genomics. It shares clinical and genomic data among researchers across many different cancer types, such as brain or kidney cancer.
"Problems can't be solved without banding together," explains Gaurav Singal, M.D., vice president of data strategy and product development at Foundation Medicine in Massachusetts. "Knowledge sharing will lead to better technologies."
Cancer Moonshot is betting on this massive amount of pooled data to move closer to finding a cure, but the road ahead is rocky. For the moonshot to work, institutions, government and industry must share data they've previously held in hammerlock. Also, the medical community is well known for lagging behind the technology curve.
Yet Biden and others in the medical community believe the payoff for pooling this fragmented data will be huge. Cancer was previously lumped into one basket, says Singal. "But it's actually dozens of subdiseases," he says. So a key of cancer moonshot's success is relying on precision medicine, which takes into account individual variability.
Pulling together and analyzing this data can affect prevention by offering better vaccines or diagnosing previously hard-to-diagnose diseases.
Biden's savviness as a bridge builder will be vital. "Researchers haven't wanted to share data, because they use it to advance their careers," says Doug Fridsma, president of the American Medical Informatics Association. "[They think], If I share my data, my competitor will gain insights and outcompete me." There aren't any rewards or incentives, he adds.
The American Association for Cancer Research launched GENIE, another data-sharing project, which links cancer genomic data with clinical outcomes. But bringing together data is no small thing, and progress has been slow.
"We have the merest tip of the iceberg in sequenced data," says Dr. Barrett Rollins, a member of the AACR Project GENIE steering committee. "And we're very far away from having tens of thousands of sequences from cancer patients in the U.S. Somebody has to gather, collate and do quality control. And also, who is going to pay for it?"
Fridsma and Rollins both add, though, that the cancer moonshot is an opportunity to fix a broken system of data sharing. "There's the potential to cure cancer and lots of secondary benefits," Fridsma adds, claiming that other disease can harness it, too.
For now, though, cancer moonshot is struggling with just standardizing data across platforms. And many types of disciplines, from supercomputers to molecular biology, must be brought together to do that. Even electronic medical patient records, which are mostly digitized by now, aren't usable for the Cancer Moonshot and must be recoded, say experts.
"So one hurdle is developing a common language," says Agus. "Now we all use different languages, and our databases don't talk. We need to use the same terminology."
Complying with HIPPA regulations, which protect patient medical privacy, is also essential. Foundation Medicine essentially scrubbed its profiles by de-identifying them, such as removing patient names and dates of birth. "This will be essential to the mission," says Singal.
And then there's the lack of data from drug trials. Less than 5 percent of patients participate in them. But Cancer Moonshot wants to change that by enticing patients to preregister for drug trials. In return, they'll be offered comprehensive tumor profiling.
The more data to be analyzed, the better, says Agus. "With bigger numbers, errors go away," he says.
He observes that medicine is still treating cancer by body part. "Pretty soon we'll have new ways of categorizing data," he concludes.
— By Constance Gustke, special to CNBC.com