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Calling on Data Enthusiasts to Help Advance Cancer Research

data sharing image that asks people to contribute their cancer research ideas to the National Cancer Moonshot Initiative

Warren Kibbe, Ph.D. is the Director of the National Cancer Institute’s (NCI) Center for Biomedical Informatics and Information Technology

Health data enthusiasts of all stripes have arrived in Washington, DC, for an annual event known as Health Datapalooza. Incredibly smart participants from government, academia, companies, startups, and patient groups meet to share ideas and brainstorm about how to share and unleash health information to improve health outcomes for all.

Although the meeting is broader than any single disease, it will explore 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.

Earlier today, 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 guidanceon 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.

Igniting Implementation of Evidence-based Cancer Control Interventions

This is a cross-post from the National Cancer Institute’s (NCI) Research to Reality Community of Practice. Last summer, I had the honor of working with some of my colleagues here in the Division of Cancer Control and Population Science on an exciting project that we submitted to the Department of Health and Human Services (HHS) Ignite Accelerator. The Accelerator is designed to help federal staff improve the way their program, office or agency works. We applied to participate in Ignite because we wanted to find a way to improve how the Research-tested Intervention Programs (RTIPs) works. Our original concept for the Ignite project was to find ways to turn programs that have been posted on the RTIPs website into mobile applications that could be used more easily by practitioners.  It was exciting to think about the possibilities for this type of work. Over three months our concept evolved significantly. Ignite provided us with training on human-centered design principles and entrepreneurial methodologies. Over the next three months, we spoke with thirty-four investigators and thirteen other stakeholders (e.g., industry, government, and small businesses) to better understand the issues related to moving research into practice. Interviews confirmed some of our assumptions and also gave us some ideas for things that NCI could do to help facilitate the process in the coming months and years. We know that investigators are dedicated to public health and want their work to have an impact on public health practice. An overarching message we heard from behavioral scientists was that they are well versed on developing and testing public health interventions but didn’t feel they had the right skillset for marketing their programs or for implementing their program at the end of the research project. Based on the interviews, we decided to shift the focus of our concept from finding a way of turning RTIPs interventions into mobile applications to focusing on helping investigators design their interventions with dissemination and implementation in mind. The result of this effort was the creation of SPRINT (SPeeding Research –tested INTerventions). SPRINT is a new training program that will leverage the experience and impact of the NSF I-Corps™ program, customized specifically for cancer prevention and control scientists to maximally affect behavior change, maintenance, and adherence of their interventions. The program, sponsored by the National Cancer Institute and run by instructors with extensive startup and teaching experience, will provide real-world, hands-on training on how to successfully incorporate cancer control innovations into successful products so they are ready to be put into real-world practice. We plan on conducting a pilot of SPRINT this summer. Once this pilot is underway, we hope to share our experiences and the experiences of investigators participating in the program. The HHS IDEA Lab’s Ignite Accelerator program is currently in the process of selecting the next round of Ignite teams and plans on announcing those teams in mid-March.