Gregory C. Simon, executive director, White House Cancer Task Force, spoke at the National Comprehensive Cancer Network Policy Summit, held just 2 days before the Cancer Moonshot Summit.
Gregory C. Simon, executive director, White House Cancer Task Force, spoke at the National Comprehensive Cancer Network (NCCN) Policy Summit, held just 2 days before the Cancer Moonshot Summit.
Highlighting the difference in life between 10 years back and today, Simon said, “Every field has advanced except for the way research has been done at the [National Institutes of Health]…hardly anything has changed at the NIH since World War II.”
Simon emphasized that there is really no limit on what we could do, “It’s about what we want to do. Changing culture is the most powerful thing on the planet.” Simon argued that science is not hard, its people who make things hard. The moonshot is organized around promoting collaboration between the government and outside players.
The national cancer advisory board has gathered a blue ribbon panel consisting of 29 experts who will create a report for the board, “which reaches the National Cancer Institute and finally to us,” said Simon. The blue ribbon panel will advise on how to spend the money to achieve the objectives of the cancer moonshot.
“Just like the original moonshot, the Cancer Moonshot is about using technology and the resulting information.”
Simon, a cancer survivor himself, cited how removing data silos and access to information had helped with his treatment. “My leukemia treatment was at [Memorial Sloan Kettering Cancer Center], and subsequent care was at [George Washington University],” he said. There were no zip code or any such restrictions, he added.
“We need to know how to get to our data, who can get to it, how they use it, and how do they share it,” Simon said. “Information that I publish should be available instantly —especially if it is government-sponsored—not 2 years later when it might be too late.” Simon believes that both raw and published form of government-sponsored data should be readily accessible to whoever seeks it. “How can a physician find out more about a patient’s disease, not just the research scientist who’s working on the disease? How can the doctor get his hands on this information so he can treat his patient better?” Simon asked.
“We need a blending of disciplines,” Simon said. That’s how ideas that tell us that containing cancer, not necessarily curing it, could evolve. This would require cross-disciplinary collaborations.
Simon also emphasized the importance of patient engagement. “Researchers who do not gain input from patients will stand to lose,” he said. “We need to include patient-reported outcomes, unexpected beneficial events, [adverse events] with researchers,” he said.
“So there is nothing but a role for [health IT] in cancer care,” according to Simon.