Abstract 3369: NCI’s Office of Data Sharing: Promoting broad & equitable policies and processes to improve cancer care
Authors: Pruitt Freddie L. , Gayle Sylvia Shabaya , Ghanem Nina , Mencarelli Anna V. , Kerlavage Anthony R. , Wang Vivian Ota , Auvil Jaime M. Guidry 
Published: August 2019

Data sharing increases our understanding of factors that influence health and diseases by enabling additional research questions from secondary data users, improving statistical power through combining multiple data sources, facilitating reproducibility and validation of research results, and supporting innovation with the development of research tools and methodologies.

The NCI recently established an Office of Data Sharing (ODS), whose goal is to promote broad and equitable data sharing policies and processes to improve cancer knowledge and care. ODS advocates for open-access and broad data sharing policies to enable reproducibility, secondary use, knowledge sharing and innovation. ODS key priorities include: 1) coordinating the interpretation and implementation of the NCI and NIH Data-Sharing policies across the NCI, 2) streamlining data-access and -submission processes for NCI- and/or NIH-supported data repositories, 3) advocating for the proper balance of open-access, open-source, open-data-sharing policies while respecting the needs of research and participant communities.

The NIH and NCI Data Sharing policies facilitate scientific progress by encouraging data access and sharing of genomic, phenotype, environmental, and behavioral data. Data access and sharing management, stewardship, and operating procedures are coordinated through a NIH governance structure of senior leadership and staff across NIH Institutes/Centers (ICs). NIH Data Access Committees (DACs) ensure data access based on shared principles and procedural standards of data management, security, privacy, and research participant protections.

In efforts to improve data access efficiency, the ODS consolidated The Cancer Genome Atlas, intramural and extramural NCI DACs into a centralized operation, the NCI DAC. In comparison to other ICs, the NCI DAC receives the largest volume of data access requests (DARs) for access to controlled-tier level data. Specifically, the NCI DAC received 9214 DARs in 2017, representing 30% of all DARs received by NIH with a mean review time of 53 days, in comparison to the combined average of 35 days for all other NIH DACs. The NCI DAC oversees 216 studies registered in dbGaP, with 93 general research use (GRU) and 22 health, medical, biomedical (HMB) consent groups that allow data to be used for broader research uses. The centralized NCI DAC implemented data access review procedures for all DARs and expedited processes for projects requesting access to datasets with GRU and HMB data use limitations. These expedited procedures have produced a 26.5-fold decrease in time-to-decision from 53 to 2 days for researchers requesting access to NCI datasets.

Additionally, ODS is committed to addressing health disparities ethics and is developing an Ethical, Economic, Legal, and Social Implications program that will address policies, practices, and ethical issues that arise from data sharing.

Citation Format: Freddie L. Pruitt, Sylvia Shabaya Gayle, Nina Ghanem, Anna V. Mencarelli, Anthony R. Kerlavage, Vivian Ota Wang, Jaime M. Guidry Auvil. NCI’s Office of Data Sharing: Promoting broad & equitable policies and processes to improve cancer care [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2019; 2019 Mar 29-Apr 3; Atlanta, GA. Philadelphia (PA): AACR; Cancer Res 2019;79(13 Suppl):Abstract nr 3369.