History of SEER-MHOS

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)External Web Site Policy.

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

  • In a 1996 report, the Health and Medicine Division (formerly IOM)External Web Site Policy 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 SEERExternal Web Site Policy. The database also contains self-reported socioeconomic, demographic, co-morbidity, race/ethnicity, and other information in the Medicare Health Outcomes SurveyExternal Web Site Policy. 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.

SEER-MHOS Historical Timeline

 

2025

Over 85 publications to date.

 

2023

SEER linkage expanded to include Texas registries. To date there are 21 SEER registries reflected in the linked data.

 

2022*

Cohort 23 Follow Up completed surveys n=86,614.

 

2021

Linkage to date includes n=1,270,895 with one or more completed survey(s) within a SEER Region.

 

2021*

A question about osteoporosis testing was removed from the HOS instrument and the numeric pain rating item was re-scaled to coincide with clinical practice.

 

2021*

Over 60 publications in the first 10 years.

 

2016

Over 20 publications in the first five years of availability beyond the Federal Government.

 

2015

HOS 3.0 Survey Instrument implemented with the addition of questions about sleep duration and quality and revisions to a question about language spoken at home.

 

2013

HOS 2.5 Survey Instrument implemented, with updated questions on race, ethnicity, sex, primary language, and disability status; the addition of IADLs and pain rating; and replacement of depression screening questions.

 

2011

First Data Use Agreement (DUA) for SEER-MHOS linkage released to researchers.

 

2008

Five publications by Federal Government scientists and collaborators using linkages of SEER registry data and the HOS patient reported outcomes.

 

2006

HOS 2.0 Survey Instrument implemented with VR-12 replacing SF-36 items**

 

2000

Cohort 1 Follow Up survey of baseline respondents. Completed Surveys n=75,593.

1998

Medicare Health Outcome Survey (HOS) Cohort 1 Baseline survey of members using the HOS 1.0 Instrument. Completed Surveys n=167,096.

 

1973

1973 the National Cancer Institute (NCI) began collecting Surveillance, Epidemiology and End Results (SEER) data about cancer cases.

*In addition to the survey revisions noted, other items were revised in selected years, including 2003, 2005, and 2014. A full crosswalk listing of items and revisions is found in the data dictionary.
**A technical report on bridging between SF-36 and VR-12 is available on request to SEER-MHOS@hsag.com. SEER-MHOS data released after 2016 include fields containing the rescored (bridged) data values.

Last Updated: 21 May, 2025