Secondary data sharing: What is it, why is it important, and how is NAACCR involved?

Secondary data sharing (SDS) occurs when a primary researcher shares data with a secondary researcher to advance science. Sometimes the shared data may contain information obtained from the cancer registry (e.g., through approved linkage requests). The NIH Data Management and Sharing Policy, published in 2003 and updated in 2023, requires that NIH-funded studies participate in SDS to maximize use of the data. According to this policy, “Sharing scientific data accelerates biomedical research discovery, in part, by enabling validation of research results, providing accessibility to high-value datasets, and promoting data reuse for future research studies.”

Current Policies

In the past, cancer registries had varying policies on SDS and many had Data Usage Agreements (DUA) that did not allow SDS or did not address the topic. This impacted the secondary researcher’s ability to meet the requirements of the NIH Data Management and Sharing Policy. As part of the Virtual Pooled Registry (VPR) initiative, a VPR Templated DUA was developed and includes a term that allows the primary researcher to share data under certain conditions. Specifically, the shared data must be de-identified according to HIPAA Safe Harbor and there must be a DUA between the primary and secondary researcher that prohibits any further sharing. To date, 26 of the 47 VPR-participating registries have adopted the VPR Templated DUA and a few other registries have added allowances for SDS to their state-specific DUA. This is a great success; however, in the absence of all registries allowing SDS:

• The shared data is limited to the registries that allow sharing.
• Effort is required to create the subset of data that is allowed to be shared.
• Primary study replicability and secondary study power are impacted.

Next Steps

To address some of these challenges, the NAACCR SDS Task Force (TF) was charged with providing recommendations, resources, and education that improve consistency and compliance with NIH data sharing requirements through the adoption of best practices among state cancer registries and primary researchers. The SDS-TF, made up of representatives from registries, research institutions, NAACCR, and programmatic and legal experts from NCI, have reviewed NIH data sharing requirements, discussed the associated challenges and opportunities, and developed fact sheets (https://www.naaccr.org/vpr-fact-sheets/). The SDS-TF is now focused on learning more about SDS mechanisms (e.g., controlled access repositories and enclaves) and gaining a better understanding of registry current policies and requirements for SDS to proceed. NAACCR recently distributed a survey to US registries to inform SDS-TF activities and key results will be shared in the future.