Restricted or Special Permission Variables

Restricted Variables

Restricted variables are variables that require additional approval by the SEER registries. These variables are routinely released in encrypted format in the SEER-Medicare data, but with additional permission from the SEER registries can be released in unencrypted format.

Encrypted Physician and Hospital Identifiers

The SEER registries require that the identity of providers (physicians and hospitals) be protected. Therefore, provider identifiers included in the SEER-Medicare claims are encrypted. This includes the Unique Physician Identification Number (UPIN), National Provider Identifier (NPI), the provider Taxpayer ID number (tax_num), and hospital provider number (hospital NPI). These numbers are encrypted in a similar manner across files and years making it possible to track the same hospital or physician in the SEER-Medicare data over time.

Investigators may want information about providers that requires linkage to other data sources by using unencrypted provider numbers; therefore, NCI has identified processes to facilitate such linkages.

Physician Identifiers

Many investigators want to link to data about physicians from the American Medical Association (AMA). However, given NCI no longer releases unencrypted physician identifiers, NCI has established methods to support such linkages. In order to link to the AMA data, investigators should complete the following steps:

1. Identify the encrypted provider numbers from the Medicare data. Physicians' identifiers are the UPINs or NPIs found on the carrier and outpatient files.
2. Send the encrypted provider numbers to NCI's information technology contractor, IMS Inc. Please e-mail the provider numbers to SEER-Medicare. IMS will unencrypt the provider numbers and send them to the AMA.
3. AMA will return to IMS their data linked to the unencrypted provider number.
4. IMS will re-encrypt the file and return to the investigator a file with encrypted provider numbers and the selected AMA variables.

*NOTE: Unencrypted TINs are not available.

Researchers who are seeking AMA data should direct any inquires to AMA's programming contractor, Medical Marketing Services, Inc.:

Kristy Vanderplow
Medical Marketing Services, Inc.
17550 N Perimeter Drive, Suite 110
Scottsdale, AZ 85255
Phone: 630-477-1555
Fax: 630-350-1896
k-vanderplow@mmslists.com

Hospital Identifiers

In order for NCI to release unencrypted hospital numbers, investigators must obtain permission from each of the SEER registries as described below.

Encrypted Geographic Identifiers

The patient's county of residence is available on the SEER Cancer File (FIP codes) and in the Medicare files (SSA codes). To protect patient and provider identification, NCI encrypts other geographic variables including patient's census tract and ZIP code, physician ZIP code, and hospital ZIP code. Separate files that contain geographically-based (ZIP code and census tract level) socioeconomic information (e.g., from the Censuses, the American Community Survey, Centers for Disease Control and Prevention (CDC), and the United States Department of Agriculture (USDA)) are provided and can be matched by the encrypted patient census tract and ZIP code to the claims files. Unencrypted ZIP codes and census tracts can only be released if the investigator obtains permission of each SEER cancer registry, as described below.

Requests for Unencrypted Institutional or Geographic Identifiers

If investigators determine that unencrypted hospital or geographic identifiers are needed for their analysis, they must go through a special approval process. Investigators must submit their completed application form (DOCX, 48 KB) to the SEER-Medicare contact with a detailed justification for access to these unencrypted variable(s). A completed and signed restricted variable request form (DOCX, 23 KB) and a list of people that will have access to these data must be included with the request. When the initial review is complete, the investigators must also obtain permission from each of the registries* prior to release of unencrypted variables for that registry. The SEER-Medicare contact will provide investigators with contact information for the SEER registries. Investigators who are requesting unencrypted variables are encouraged to allow sufficient time to obtain the necessary approvals.

*In order to receive unencrypted census tracts for Texas cases, additional approval is required from the Texas Cancer Registry. After the standard NCI approval process, requestors must also receive approval from the Texas Department of State Health Services Institutional Review Board (DSHS-IRB).

Note: Files with unencrypted variables cannot be stored with regular SEER-Medicare data. In order to combine multiple requests when purchasing data, all requests must have the same permissions for access to any unencrypted variable.

Alaska Native Tumor Registry Data

In addition to needing NCI approval, all requests for Alaska Native Tumor Registry Data, which includes incident cancer among Alaska Natives (Eskimo, Indian, Aleut), must be reviewed by the Alaska registry and may require tribal review. The SEER-Medicare contact will forward proposals, on behalf of the requestor, to the Alaska registry, after receiving NCI approval.

Special Permission Variables

Special permission variables are variables that require an additional level of approval by NCI. Depending on the requested data, approval of release may require sharing information with a third party data owner.

Oncotype Dx

Genomic Health Inc (GHI), which is now part of Exact Sciences Corp., developed the Oncotype DX Breast Recurrence Score® assay (Assay), which is a commercial diagnostic test that predicts 10-year distant recurrence risk based on the expression of 21 genes. The resulting recurrence score is used to better weigh the harms and benefits of chemotherapy, thereby informing treatment decisions. The Assay data are linked to SEER data via a collaboration between NCI and GHI, with IMS acting as the third party, honest broker. The Assay variables that have been linked to SEER data include: Assay, Assay risk group, Assay reason no score, Assay test report date, and Assay months since diagnosis. Note: Per the agreement, NCI will provide GHI with all approved applications requesting Oncotype Dx variables and any manuscripts or reports that result from the analyses of such data. These documents will be shared with GHI for informational purposed only; all approval decisions will be handled by NCI.

*NOTE: variation in multigene signature method have been observed (e.g., by geographic region and calendar year); this variation should be taken into consideration during study design and interpretation.

HRR-encrypted Zip Code Crosswalk

NCI can provide a zip code crosswalk file to facilitate the link to the Dartmouth Atlas of Health Care Hospital Referral Regions (HRRs) with the encrypted zip codes.

More geographic information available at Geographic Area Data.

Area Deprivation Index

The Neighborhood Atlas Area Deprivation Index (ADI) is a scientifically validated measure of the adverse social exposome (i.e., neighborhood disadvantage) that can be used to evaluate and improve factors that impact health across populations. The development of the Neighborhood Atlas ADI was supported by the National Institutes of Health and the University of Wisconsin School and Public Health Center for Health Disparities Research. The Neighborhood Atlas ADI was linked to the SEER-Medicare data to promote assessments of area-level measures related to the cancer care delivery and outcomes. Justification for the ADI data must be provided in the SEER-Medicare application or update/change request form (for previously approved projects). If receipt of the ADI data is approved, SEER-Medicare staff notify the Neighborhood Atlas that the requestors will be receiving the ADI data, which helps the Neighborhood Atlas track the utilization of their index.