The data owners (SEER registry PIs and CMS) hold NCI responsible for tracking the use and location of all released SEER-MHOS data. Given that interest in SEER-MHOS 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 maximum number of times data can be obtained for the same project is three: 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 must request a one year extension to the DUA. These extensions may be renewed annually until a maximum data retention period of 10 years. If more than 10 years has lapsed since data were initially received, investigators will need to submit a new application for review and approval. Without an approved extension, all SEER-MHOS data must be destroyed.
Investigators will be allowed to share data for approved projects with colleagues at their institute only if the data:
- pertain to the same cohort (e.g., the same cancer site), and
- were purchased within the previous 2 years.
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.
Data usage agreement amendments
Investigators wishing to make changes, including the addition of a study aim, to an active DUA without requesting additional data must provide written documentation pertaining to such modifications. NCI will review and approve proposed amendments on a case-by-case basis. All potential DUA amendments are subject to the same provisions specified in the SEER-MHOS application, including:
- additional aims and/or content closely relate to aims found in the original proposal, and
- proposal additions are relevant to improving the quality of life of Medicare Advantage Organization cancer patients.
Amended proposals can be submitted for review by e-mail at SEER-MHOS@hcqis.org.
Suggested acknowledgment and disclaimer
NCI would appreciate the inclusion of the following acknowledgment in any publication or presentations using SEER-MHOS linked data:
"This study used data from the SEER-MHOS linked data resource. The interpretation and reporting of these data are the sole responsibility of the authors. The authors acknowledge the efforts of the National Cancer Institute; the Centers for Medicare & Medicaid Services; Information Management Services (IMS), Inc.; and the Surveillance, Epidemiology, and End Results (SEER) Program tumor registries in the creation of the SEER-MHOS database."