History of the SEER-MHOS Linked Data Resource

The Surveillance, Epidemiology, and End Results-Medicare Health Outcomes Survey (SEER-MHOS) linked data resource is a research resource designed to improve our understanding of the health-related quality of life (HRQOL) of cancer patients and survivors enrolled in Medicare health plans. SEER-MHOS is sponsored by the National Cancer Institute (NCI) and the Centers for Medicare & Medicaid Services (CMS).

Several catalysts spurred the creation of the SEER-MHOS linked database:

• In a 1996 report, the Health and Medicine Division (formerly IOM) urged a stronger focus on "outputs" than "inputs" of care in measuring health care quality. IOM called HRQOL a key outcome for older Americans.
• HRQOL is a major reason for offering cancer treatment, yet the current national surveys that collect HRQOL data are not tailored to cancer patients. NCI recognized that other approaches were necessary to capture large samples of cancer patients and survivors.
• A surveillance mechanism was needed to monitor HRQOL in the same manner that other cancer outcomes are tracked in the U.S. population.

NCI and CMS' partnership in this initiative is modeled on the SEER-Medicare Linked Data Resource. In both cases, CMS provides the Medicare beneficiary data and NCI provides the SEER data. NCI manages the SEER-MHOS data resource, but both agencies work together to update and improve the database over time. Both agencies also collaborate in creating and carrying out the research plan that guides the initiative.

The most recent SEER-MHOS linkage was completed in 2023. It contains data from 22 SEER registries. The data resource currently spans from 1998 through 2021. Over 900,000 survey respondents without cancer in the same geographic areas are included as a non-cancer comparisons.

During the years 1998-2005 in the Medicare HOS 1.0, the primary health-related quality of life measure of physical and emotional functioning was the Medical Outcomes Study Short Form-36 (SF-36). Beginning in 2006, with the implementation by CMS of the Medicare HOS 2.0, the Veterans RAND 12-item Health Survey (VR-12) replaced the SF-36 for measuring the physical and mental health status of beneficiaries.

The database contains clinical and initial treatment information for individuals diagnosed with cancer from SEER. The database also contains self-reported socioeconomic, demographic, co-morbidity, race/ethnicity, and other information in the Medicare Health Outcomes Survey. The linked dataset will enable investigators to systematically investigate HRQOL issues in this Medicare population, both for individuals diagnosed with cancer and those who are cancer-free.