By: Vivian Ota Wang, Ph.D.
Deputy Director, Office of Data Sharing
Center for Biomedical Informatics and Information Technology
National Cancer Institute
Broad and equitable data sharing can be interpreted many ways. For NCI’s Office of Data Sharing, this means balancing the support of exciting science and innovation and the needs of research and participant communities with privacy and realistic expectations. This balance is possible when the policies we create acknowledge the benefits and challenges the public, research, and participant communities experience as they share their information to advance disease knowledge and improve healthcare. As we continue in this era of big data and data sharing, we want to ensure everyone’s voice is heard. There are many ways you can make a difference! Here are a couple of opportunities where your comments can help shape the landscape for making data sharing broad and equitable.
At a Federal government level, you can share your perspectives on the Federal Data Strategy by Friday, November 16. The strategy will outline an approach to Federal data stewardship, access, and use. All data generated by Federal funds, including scientific and genomic data, would be governed by this Federal Data Strategy. The proposed draft practices encompass five objectives:
- Governing and managing data as a strategic asset including practices regarding the regular assessment of data maturity, documenting existing data in a digital repository, and establishing data governance committees.
- Protecting and securing data with goals to define the responsibilities for protecting the confidentiality of data and the review of data releases for disclosure risks.
- Promoting efficient use of data assets including incentives to share data, goals to facilitate data sharing across agencies, and promotion of fair and equitable access to Federal data.
- Building a culture that values data as an asset with practices to focus on the end use of data to ensure data collected will meet internal and external stakeholder expectations.
- Honoring stakeholder input and leveraging partners with the goals of monitoring and assessing the needs of those who access and use the data and the public.
Additionally, the National Institutes of Health (NIH) has released a request for information (RFI) to gather comments to update the NIH Data Management and Sharing policy. This RFI calls for researchers, organizations, and the public to provide input by Monday, December 10, on the:
- Definition of scientific data (e.g. what kinds of data should be considered)
- Requirements for data sharing and management plans (e.g. should formal plans be part of funding applications and if so, should they be reviewed and considered for funding decisions)
- Considerations for how the policy will be implemented (e.g. appropriate timelines or phasing and how they relate to needed improvements in data infrastructure, resources, and standards)
The NIH Office of Science Policy already has shared proposed provisions for this policy regarding the scope, compliance and enforcement, data sharing plan requirements, data preservation and access timelines, data sharing agreements, licensing, and intellectual property.
Broad and equitable data sharing isn’t possible without you. To build an equitable, representative, and inclusive landscape that properly balances people with the science, it is essential to hear your views about opportunities, challenges, and expectations regarding data access and sharing. Please take a moment to share your thoughts about the Federal Data Strategy and the NIH Data Management and Sharing Policy. Your voice is important!
To contact the NCI Office of Data Sharing, email firstname.lastname@example.org.