How to Advance Progress Against Cancer: We Asked and You Delivered - LINK FIXED
This Medium story by Dinah Singer, Ph.D., director of NCI's Division of Cancer Biology, discusses the 1,600+ ideas and comments received from the public and cancer experts when the Cancer Moonshot's Blue Ribbon Panel asked for ideas on priority research areas, along with next steps for the initiative.
How to Advance Progress Against Cancer: We Asked and You Delivered
By Dinah Singer, PhD, Co-chair, Vice President’s Cancer Initiative Blue Ribbon Panel, Acting Deputy Director, National Cancer Institute, and Director, Division of Cancer Biology, NCI
When the Cancer Moonshot’s Blue Ribbon Panel asked the American public and cancer experts for their ideas on priority research areas to fund under this initiative, it was anybody’s guess as to what we would receive. Would people send in personal stories? Or would responses be technical or research related?
Two months later, we were gratified by the breadth and quality of the responses. Through an online portal called CancerResearchIdeas.cancer.gov, and a public email box and phone line, we received more than 1,600 ideas and comments for accelerating progress against cancer — some truly novel, most substantive, sensible, and patient-centric. All were ambitious and sincere.
A Diversity of Views
Vice President Biden has used his passion and energy to appeal for ideas from leading experts and anyone with a solid idea for making the prevention, diagnosis, treatment and survival of cancer easier, faster and more effective.
Through a research-focused crowd-sourcing effort coordinated by the National Cancer Institute (NCI) of the National Institutes of Health, the public submitted ideas in eight categories: cancer prevention and early detection, clinical trials, data sharing, pediatric cancer, tumor evolution and progression, implementation science, immunology and prevention, and other exceptional opportunities. Once a week, members of the Blue Ribbon Panel and its seven working groups reviewed the submissions both to ensure that our priorities aligned with those of the broader community and to see what ideas we might be missing.
Our charge from the Vice President is to identify the top cancer research opportunities that are poised for rapid acceleration, and that with additional focus and funding could accomplish in 5 years what would normally take a decade. Since April, we have been considering initiatives that fill a research void; that have been successful in a small population and could be scaled up to benefit more people; or are promising new areas of research, like immunotherapy, that need intense focus right now to help more patients. In other words, these would be initiatives “ready to enter the HOV lane” where they can take off and go fast.
At the close of the submission period on July 1, the ideas and comments submitted to the portal revealed several broad themes that the research community and public are urging the government to act on with an infusion of funds to speed up progress against cancer:
1. Invest in “on the cusp” breakthroughs. Fund the best science in cancer prevention vaccines, immunotherapy, metastasis research, pediatric cancer treatments, non-invasive liquid biopsies, and new imaging technologies that are proving to be effective and could be pushed to the next level.
2. Share cancer research results broadly. Require that the entire cancer community provide open, free public access to all research findings, particularly research supported by public funds.
3. Make it easier to find and enroll in cancer clinical trials. Strengthen partnerships between the NCI and community oncology practices to make clinical trials available at more community hospitals where the majority of cancer patients are treated.
4. Focus on survivors. With the number of cancer survivors growing, improve their quality of life by improving the management of symptoms and side effects, and reducing the long-term effects of cancer treatment, especially in children.
5. Build on what works. Make prevention and treatment initiatives that have been proven to work much more broadly available in underserved populations, such as HPV vaccination and colorectal cancer screening.
Below is a sampling of some of the ideas submitted:
· Improve the cancer “experience.” Introduce the concept of “cancer concierges,” similar to patient navigators, who are highly trained to help patients find treatment options, navigate their choices, understand complex information, and enroll in clinical trials.
· Prevent cancer through healthier living. Sponsor clinical trials to evaluate multiple lifestyle behavior coaching strategies to reduce the cancer burden, and expand what has been proven to work in larger populations.
· Improve data sharing tools. There is no universal website that hosts or promotes use of existing technologies; introduce a “grand resource in one place… to catalog and direct all storage and query tools, e.g., cancer-scientist.org, LINCS canvas browser, Genomic Data Commons, etc.”
· Create a registry of ALL cancer patients, including their diagnosis, treatments, and outcomes, for researchers to learn from and for oncologists to guide future patient care.
· Require papers to be freely available at the time of publication. Require that the results of any federally-funded cancer research be available to the public for free at publication for all journals, not 12 months later, because “[t]hat year of delay is one we can’t afford.”
· Engage public libraries as health literacy engines. Make libraries “teachers” on how to read about cancer and health, with context, to engage caregivers, patients and the public.
· Engage Obstetricians/Gynecologists to increase HPV vaccination rates.Ob/gyns are uniquely suited to recommend and vaccinate their patients.
· Invest in DNA sequencing and molecular profiling of metastatic cancer. Collect metastatic tumor samples, generate data and knowledge needed to discover all driver mutations associated with metastatic disease regardless of tumor of origin, and use that to drive better therapies for people with metastatic cancer.
Obviously, not every idea can be included in our final list of Blue Ribbon Panel recommendations. However, all of the ideas are being shared with NCI’sadvisory boards for future research planning beyond the Vice President’s initiative. Perhaps most inspiring about the CancerResearchIdeas effort was the realization that the majority of the submissions echoed the discussions taking place within the Blue Ribbon Panel’s working groups. That reassured us that the working groups truly had been listening to the direction the research community and public want our country to go in. It also reaffirmed that soliciting ideas from the community worked for this planning effort and can work with long-term cancer research planning going forward.
You can read all of the ideas on the archived website here.
The Blue Ribbon Panel is now completing its deliberations for high-priority research areas under the Moonshot and expects to release the final report this Fall. Once approved, the NCI intends to begin implementing the recommendations including preparing Funding Opportunity Announcement concepts based on the recommendations, with the goal of funding beginning in summer 2017.