The White House Cancer Moonshot has placed a large importance on data, and there are many ways in which that data can be improved, according to cancer experts.
“What has been interesting about the Cancer Moonshot is this importance placed upon data and how we can break certain silos and how we can share more information,” said Michael Balint, a presidential innovation fellow.
“Eliminating silos of information and improving data sharing is so central to the moonshot effort,” agreed Anabella Aspiras, director for patient engagement, cancer research, and technology in the Cancer Moonshot Task Force. “I think, as we transition to a culture and a system that supports data sharing, only then will we realize the true benefits of big data, and I think that these benefits will be truly felt by the patient and cancer community.”
Aspiras explained that data affects cancer treatment in three main areas: the art of medicine, the science of medicine, and the technology of medicine.
“The art of medicine is treating the person beyond the patient, treating the person beyond the data, and it takes years to hone that art. The science of medicine is based on data, what a person reports to me on their symptoms, their family history of illness. So the science of medicine is based on data, deriving a diagnosis based on that data and then treating the patient. But the third piece of data for patients is the technology of medicine, and I think that this piece is perhaps the most frustrating,” Aspiras said.
As an example of how frustrating the technology of medicine can be, Aspiras described her attempt to move her electronic health records from her former doctor’s office in New York to her current doctor in Washington, D.C. The process took multiple calls, and she ended up receiving a physical CD of her health records in the mail long after she had needed them.
“When we’re talking about open data, we aren’t talking about a patient’s access to their own clinical information, but I think that we should,” Aspiras said. “Because imagine the kind of delay that I’m describing for a patient who has just been diagnosed with a very aggressive from of cancer.”
“We forget that the health care system should be built around the patient and the data to support the needs of that patient,” said Craig Shriver, director of the Murtha Cancer Center. He added that Aspiras’ experience is incredibly common.
Balint also said that data can be used to connect cancer patients with clinical trials that they would otherwise not have access to.
“Only 4 percent of patients who have cancer actually go through with a clinical trial,” Balint said, explaining that without a family connection or a doctor that is very aware of ongoing trials, it is easy for people to miss out on new treatment that could help them.
“It’s difficult to match up patients to trials, and there’s a very data-intensive element and component to clinical trials,” Balint said.
Where and by whom a person gets treated can also determine the outcome of cancer data produced by research centers.
“The majority of patient data in cancer that is available comes from academic cancer centers,” Aspiras said. “However, the majority of care is taking place out at the community level. So we need to make sure that we’re analyzing big data in order to make the benefits of that analysis applicable to everyone, that our samples are representative of minority and underserved communities as well.”