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 2004 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.