What is the SEER-MHOS linked database?

The Surveillance, Epidemiology, and End Results-Medicare Health Outcomes Survey (SEER-MHOS) linked database 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 Institute of Medicine (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.
• A recent NCI report called for more HRQOL measurement in clinical trials and cancer survivorship research to achieve the 2015 goal of eliminating suffering due to cancer.
• 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 US population.

NCI and CMS' partnership in this initiative is modeled on the SEER-Medicare linked database. In both cases, CMS provides the Medicare beneficiary data and NCI provides the SEER data. NCI manages the SEER-MHOS database, 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 SEER-MHOS linkage was completed in 2007 and the final database has data from 14 SEER registries and more than 300 Medicare Advantage managed care plans that annually participate in data collection. The data set currently spans from 1998 through 2003 and includes four cohorts of data representing more than 40,000 survey respondents who are cancer patients and survivors. More than 200,000 survey respondents also are included who have never been diagnosed with cancer. The primary health-related quality of life measure of physical and emotional functioning is the Medical Outcomes Study Short Form-36 (SF-36). 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, and race/ethnicity, and other information in the Medicare Health Outcomes Survey. The linked data set will enable investigators to systematically investigate HRQOL issues in this Medicare population, both for individuals diagnosed with cancer and those who are cancer free.

Currently, the database is unavailable to external investigators outside of the SEER network, but plans are underway to make the data available more widely in 2009.