Frequently Asked Questions about the SEER-MHOS Data Set

1. Is there someone I can speak with to help me to understand the overview of the process for obtaining data and guidance for my data selection?
   1. We understand that the SEER-MHOS database is large and complex. Investigators are encouraged to contact SEER-MHOS@azqio.sdps.org for guidance about the intricacies of the data before making requests and undertaking any analyses.
   2. Health Services Advisory Group (HSAG) and IMS will work with investigators requesting data files to balance their research needs with the proprietary standards pertaining to the beneficiaries and institutions included in the data.
2. Does the researcher need to link the SEER data with the data from MHOS?
   1. The linkage of persons in the SEER data to their MHOS data is performed by the National Cancer Institute (NCI) and the Centers for Medicare and Medicaid Services (CMS) and is not the responsibility of investigators seeking to use the data.
3. Is there any training available for investigators to understand how to use the SEER-MHOS data?
   1. A PowerPoint training session entitled “Uses of the SEER-MHOS Data Set” is available for viewing on this SEER-MHOS website. The training program provides an overview of the SEER-MHOS collaboration and information about how to obtain and use the SEER-MHOS data.
4. If I have a grant application completed, may I just submit that in place of my application form?
   1. A grant application cannot be substituted for the required application form. An incomplete application will delay your request.
   2. If you prefer, you could cut and paste the grant application and use it to form the basis of your SEER-MHOS data application.
5. As part of the approval process, does NCI critique the methodology or merits of the proposed projects?
   1. The purpose of the approval process is to ensure the confidentiality of the patients and providers in the SEER geographic areas, not to critique the methodology or merits of the proposed project.
   2. If there are ongoing concerns about confidentiality, SEER-MHOS data will not be released, regardless of whether a researcher has already been funded by another agency or organization to conduct an analysis using the data.
6. When is the SEER-MHOS data expected to be updated?
   1. NCI and IMS plan to update the SEER-MHOS linkage every two years. At that time additional cohorts of data will be available.
7. Is there a fee to obtain the SEER-MHOS data?
   1. Yes, there is a fee, but because NCI subsidizes requests for the SEER-MHOS data, the programming costs to the researcher do not reflect the total costs of producing the SEER-MHOS data.
   2. The cost of acquiring SEER-MHOS data varies to cover the expenses of creating the data files.
   3. IMS, the programming contractor for NCI, will begin processing a data request upon receipt of payment.
8. How long should we expect the review process to take?
   1. The review and approval process generally takes 4-6 weeks from receipt of the completed proposal.
   2. The purpose of the approval process is to ensure the confidentiality of the patients and providers in the SEER geographic areas.
9. How long will the processing of the data request take?
   1. All requests for SEER-MHOS data must be reviewed and approved before any data can be purchased.
   2. IMS, the programming contractor for NCI, will begin processing a data request upon receipt of payment.
   3. Preparing the data usually requires 4-6 weeks.
10. Can investigators link variables from the SEER-MHOS files to files other than SEER-MHOS without the written consent from the applicable SEER registries?
    1. The SEER-MHOS data cannot be linked to other data sources.
11. Can investigators who have the data share the files with other investigators?
    1. Investigators who are contacted by colleagues who wish to use their data should ask their colleagues to contact SEER-MHOS.
12. I’m moving to another institution. May I take the SEER-MHOS data with me?
    1. Investigators cannot take any files with them when moving to another institution. You must contact Health Services Advisory Group (HSAG) before you move for specific instructions.
    2. If the SEER-MHOS data will remain at the old institution, a new PI must be designated and sign the DUA.
13. What does the basic SEER-MHOS analytic file contain?
    1. The file includes MHOS data for persons who have responded to at least one MHOS survey. It also contains cancer data for the MHOS responders who are in the SEER data set.
    2. Up to twelve records per person may be available in this file, for individuals who were included in the MHOS sample every year and responded to all six baseline and follow-up surveys.
    3. The file contains demographic information obtained from sources including the Enrollment Database (EDB) maintained by CMS, SEER files, and self-reported information.
    4. For beneficiaries with cancer, the file includes date of diagnosis and clinical information for up to 10 cancers, vital status, and some information at the census tract and ZIP code levels (income, education, and race/ethnicity).
14. In what format will the SEER-MHOS analytic file be provided?
    1. The file will be provided in SAS transport format.