The data owners (SEER registry PIs and CMS) hold NCI responsible for tracking the use and location of all released SEER-Medicare data. Given that interest in SEER-Medicare data continues to grow exponentially, there is an ever increasing number of data requests that need to be tracked. In order to ensure that NCI is knowledgeable about how the data are being used, who is using the data and to avoid a change in scope, limitations on the number of data updates, data retention and data sharing are warranted.
The 2020 SEER Medicare linkage is not compatible with any previous release. Therefore, you will not be able to request updated data for any application approved prior to this release. If you want data from the 2020 SEER-Medicare linkage, you will need to submit a new application. All previously released data must be destroyed.
For applications that are approved for the 2020 Linkage, you will be able to request data up to three times: the initial data request and then updated data from the next two subsequent linkages. If additional updates are desired, investigators will need to submit a new application for review and approval.
The Data Use Agreement (DUA) states the data retention time period is 5 years. If additional time is necessary to complete the approved project, investigators can request an extension to the DUA. However, any DUA established prior to December 2020 will not be extended. Investigators will need to submit a new application for review and approval. Without an approved extension, all previously released SEER-Medicare data must be destroyed.
With the release of the SEER-Medicare 2020 Linkage, investigators will not be able to submit new applications to re-use/share data from previous linkages. Investigators will be allowed to submit new applications to re-use/share data for projects approved for the 2020 release with colleagues at their institute only if the data pertain to the same cancer site and Medicare claims.
Please note that the data retention period for the shared data will commence from when the data for the initial project was received not when the request to share the data was submitted.
Combining Data Released Before and After 2020
As a result of new agreements with the Centers for Medicare and Medicaid Services (CMS), all Medicare data released via SEER-Medicare in 2020 and moving forward will come from CMS’s Chronic Conditions Warehouse (CCW). These files are in a different format from files that were released in prior years. Researchers who have open SEER-Medicare projects and are using data released prior to 2020 will be able to complete their studies using the data files that they currently have for as long as their DUAs are valid. However, to not prolong the complete switch to the CCW files, researchers will not be allowed to request new CCW files to combine with older files that they previously received. If additional data are required to complete an open project, an entirely new request can be made via usual processes.