Frequently Asked Questions about the SEER-CAHPS Dataset

Is there a limit to the number of cancer sites that a researcher may request?

In order to balance the preferences of our investigators with our charge to be good stewards of the linked data resource, we must limit the number of cancer sites for all data use agreements (DUAs). Written justification (based on study rationale and existing literature) is needed for all cancer sites requested. Furthermore, we are willing to revisit the release of additional cancer sites upon demonstration of publication on a smaller subset of cancer sites.

What criteria are used to review data use agreements and proposals?

We assess proposals in order to ensure data safety and confidentiality, but we also keep in mind the ability of the dataset to meet proposed aims. Investigators are advised to carefully consider each cancer site they are requesting and give a rationale for each one. We also suggest that investigators review previously published manuscripts using SEER-CAHPS data so as not to duplicate previously published work.

Do only the Principal Investigators need to submit a signed DUA?

All personnel with access to the SEER-CAHPS data should provide signatures on the DUA.

In general, how long will it take to receive data once the proposal is completed and approved by the NCI and SEER PIs?

The entire process, including submission, multilevel review, feasibility checks, invoicing, and data delivery usually takes from three to four months.

As part of the approval process, does NCI critique the methodology or merits of the proposed projects?

The purpose of the approval process is to ensure the confidentiality of the patients and providers in the SEER geographic areas. If there are concerns about confidentiality, SEER-CAHPS 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. Reviewers from NCI and SEER may comment, however, on aspects of the research plan that may affect project feasibility and scientific rigor. NCI will work with investigators requesting data files to balance their research needs with those of the individuals and institutions included in the data.

Do the SEER-CAHPS data identify comorbidities that are present before and after cancer diagnosis?

Although the data vary from year to year, some years of SEER-CAHPS data do contain indicators for a limited set of self-reported comorbidities, such as heart attack, angina, COPD, and diabetes. The question asked was: “Has a doctor ever told you that you had any of the following conditions:…” The CAHPS surveys also elicit other self-reported health-related information, such as general and mental health status; limitations in activities of daily living, such as bathing, dressing, eating, and toileting; presence of any chronic condition and related doctors’ visits; and smoking status. The questions asked varied from year to year and survey version to survey version. They may be identified before or after cancer diagnosis, depending upon the timing of the CAHPS survey. Please refer to the CAHPS Details for Researchers file for complete details on the data available for your study period.

The SEER-CAHPS linkage also includes Medicare claims data for enrollees in fee for service (FFS) plans. For those enrollees, researchers can calculate any claims-based measure of morbidity, such as the Charlson comorbidity index, CMS-HCC scores, or other scores produced by risk-adjustment software. See SEER-Medicare: Calculation of Comorbidity Weights for more information.

For the approximately 60% of the sample that is enrolled in Medicare Advantage (and thus do not have any linked claims or encounter data available), the only morbidity and utilization data available are the self-reported CAHPS survey data and SEER-collected clinical data about each beneficiary's cancer.

Can data on restricted variables be requested in a project proposal?

If investigators determine that restricted variables are an essential part of the analysis, data for these variables will be available upon request and evaluated on a case-by-case basis. Investigators intending to include restricted variables in their proposals must include detailed justification for access to the restricted variable(s). For additional information, please contact SEER-CAHPS staff.

Are CAHPS surveys available to researchers?

A number of CAHPS surveys are available to investigators upon request. Data documentation, including question wording, item numbers, and differences across health plan survey type, may be found on the Data Documentation page. For more information on the types and available years of CAHPS surveys and to submit a request, please contact SEER-CAHPS staff.

If I already have applied for and obtained SEER-Medicare data, do I only need to pay the cost of adding the CAHPS data?

The SEER-CAHPS data are a different linkage than SEER-Medicare, and are based upon a different sampling frame, those who complete a CAHPS survey. As a result, a researcher cannot add the CAHPS survey data to previously obtained SEER-Medicare data. The cost of SEER-CAHPS is also separate from the cost that you may have paid for SEER-Medicare data. SEER-CAHPS data files are created by Information Management Services (IMS), and the cost of data reimburses IMS for the cost of producing the data.

One of the required documents is evidence of IRB approval or exemption. Can I submit the DUA application for review and then follow-up with the IRB approval/exemption before the data is released to me?

IRB approval documentation is required for application to obtain the SEER-CAHPS data. A researcher can submit the DUA application for review and then follow-up with the IRB approval or exemption, however no data will be released before we receive the IRB approval/exemption.

How is the grant submission process different from the application process to receive the data?

The grant proposal and DUA proposal are separate processes, as the grant proposal is to apply for funding, and the DUA proposal is the process to obtain the data. We encourage investigators interested in the SEER-CAHPS data resource, however, to reach out to SEER-CAHPS staff prior to submitting a grant proposal for a project requiring SEER-CAHPS data.

Is Medicare Part D data part of the SEER-CAHPS linked data resource?

At this time, Medicare Part D claims data are not available in the SEER-CAHPS linked data resource.

Is SEER-CAHPS the SEER-Medicare linkage with the CAHPS survey added?

The SEER-CAHPS data are a different linkage than SEER-Medicare, and are based upon a different sampling frame, those who complete a CAHPS survey. Please refer to this comparison table for how SEER-CAHPS differs from SEER-Medicare and SEER-MHOS.