You have one week to tell
the government what to do
By Laurie McGinley
June 24, 2016 at 10:00 a.m. EDT
For months, the National Cancer Institute has been gathering research ideas from the public and experts around the country via a special portal, CancerResearchIdeas.cancer.gov. The suggestions are being funneled to seven working groups looking for the best opportunities for speeding up progress against cancer. But the NCI is facing a series of deadlines, so the portal will be shut down at end of the next work week.
So far, the cancer institute has gotten 616 suggestions -- more than 400 through the portal and another 200 by phone and email -- on topics such as expanding clinical trials; enhanced data sharing; pediatric cancer and prevention and early detection. Some of the ideas are highly technical; others are commonsensical and a few are downright wacky.
One writer suggested that the government develop vaccines "that target CD4+ helper T cells;" another pressed for collaboration on data from the white-hot, competitive field of liquid biopsies. Yet
others pushed for an end to all sugar consumption and the promotion of yoga to calm cancer patients. One person suggested creating a database of "healthy elders with their particular toxin loads, environs, and lifestyle choices," adding, "A friend died (103) with no cancer, religiously ate 2 hot dogs, pre-fried chicken, beef patty, canned sausage every week."
The Soulforce Medicine Show, which apparently believes cancer is caused by the lingering souls of dead people and animals, also had several suggestions.
For the most part, NCI officials are pleased with the submissions. Dinah Singer, who is co-chair of the NCI's Blue Ribbon Panel for the moonshot initiative, said she was surprised at the high quality and wide variety of the suggestions, which ranged from health disparities to social media to new approaches to immunotherapy.
She said several of the ideas were in line with officials' thinking about moonshot priorities, including the importance of developing new cancer vaccines and allowing open, public access to research paid for by the government.
The Blue Ribbon Panel's working groups are sifting through ideas, which they will send to the panel, which then makes recommendations to the National Cancer Advisory Board and NCI officials. Vice President Biden is heading the administration's moonshot initiative.
Matthew Katz, a radiation oncologist in Lowell, Mass., submitted 13 research ideas, in part, he said, "to demonstrate to the NCI and research community the value of ideas from outside the ivory tower."
Among his suggestions: Through crowd-sourcing, find better ways for doctors to talk to patients about cancer. "Excessive use of war analogy turns a patient's body into a metaphorical battlefield," he said.
"If people didn't feel like their body was under attack, it might make it easier for people to make decisions that fit better with their values -- and sometimes that might mean less treatment rather than more."
He also suggested that more training be devoted to minimally invasive autopsies. That might make families more likely to agree to autopsies, which he said can provide essential information about the progression of cancer.
As for the quality of the ideas submitted to the NCI, he said all of the proposals have value, even the less- sophisticated ones. "When you ask the public for feedback, you are going to get a range of quality," he said. "Some have an agenda, but they are still relevant to everyday people. It still important because it matters to them."
Increasing numbers of cancers can be treated by immunotherapy Meet the outspoken head of the young-adult cancer movement Hopkins cancer center gets big gift from Bloomberg and others