Calling on Data Enthusiasts to Help Advance Cancer Research
From HHS Idea Lab (@) Blog
By Warren Kibbe, Ph.D., Director of the National Cancer Institute’s (NCI) Center for Biomedical Informatics and Information Technology
Health data enthusiasts of all stripes arrived in Washington, DC, for an annual event known as Health Datapalooza. Incredibly smart participants from government, academia, companies, startups, and patient groups met to share ideas and brainstorm about how to share and unleash health information to improve health outcomes for all.
Although the meeting was broader than any single disease, it explored a topic that is central to NCI’s efforts against cancer: creating knowledge from data. And the institute is reaching out to the data innovation community to help us do just that.
I heard Vice President Joe Biden speaking at Health Datapalooza about the importance of using data to contribute to advances in health. As part of the National Cancer Moonshot Initiative that he is leading, the Vice President has called on the cancer research community to explore new approaches to cancer research, and one repeated message is that data sharing will be critical if we’re going to accelerate progress against cancer.
Cancer is fundamentally a disease of the genome. Increasing amounts of genomic information have been generated in recent years using new tools and improved instruments for analyzing DNA. We know that sharing the results from genomic studies will be essential for translating them into clinical advances for patients.
To that end, NCI supports the National Institutes of Health Genomic Data Sharing policy, which was issued to promote the broad sharing of genomic research results and to ensure oversight and protections for research involving human data. NCI has developed guidance on the NIH data sharing policy.
In addition, NCI is establishing the Genomic Data Commons (GDC) as a platform for sharing genomic information and associated clinical data broadly with the best scientific minds. The GDC will be an interactive system to store, harmonize, and provide access to data generated by cancer researchers. The Cancer Cloud Pilots Program is another platform we are exploring to enhance access and enable analysis of cloud and genome data for cancer researchers.
From these projects and others, we also have gained insights into many of the challenges of “big data.” Among them is the need for the standardization of results from diverse sources. Another is to establish safeguards to protect patient privacy and to enable secure spaces for working with data. We are making important steps, but the journey is only beginning.
To address these and other challenges, I invite the data innovation community to share their expertise on data sharing and help us accelerate progress against cancer. NCI has provided an online platform, Cancer Research Ideas, to enable the research community and the public to submit ideas for the National Cancer Moonshot efforts.
The submissions we receive will be considered by a panel of scientific experts and patient advocates as it develops the scientific direction for the National Cancer Moonshot Initiative. We welcome your ideas and creativity as we explore new and innovative ways to improve the health of patients with cancer.