Health Services and Quality of Care

The Medical Expenditure Panel Survey (MEPS) Experiences with Cancer Supplement provides detailed data on cancer survivorship issues related to financial burden, access to medical care, employment patterns for survivors and their caregivers, and other aspects of productivity losses. The supplement was fielded for the first time in 2011–2013 and will be re-fielded in 2016–2018. The updated supplement will add questions related to access to care and health insurance relevant to the implementation of the Affordable Care Act. The MEPS sample is drawn from a subsample of the prior year NHIS sample.

PROMIS® (Patient-Reported Outcomes Measurement Information System) is a set of person-centered measures that evaluates and monitors physical, mental, and social health in adults and children. It can be used with the general population and with individuals living with chronic conditions.

The NCI Patterns of Care (POC) Studies is a congressionally mandated initiative begun in 1987 to evaluate the dissemination of state-of-the-art cancer therapy and diagnostics into community oncology practice and identify patient-, provider-, and system-level factors that are associated with receipt and utilization of cancer care. Each POC study focuses on two to four different cancer types; detailed information from a random sample of individuals diagnosed with those cancers is collected through medical record abstraction by individuals at participating registries. These data include detailed information on patient sociodemographic characteristics and risk factors; cancer therapies and biomarker tests; participation in clinical trials; comorbidities; and treating hospital characteristics. A subset of POC data are available in aggregate form using an online tool, POC*Explorer.

PROSPR, or Population-based Research to Optimize the Screening Process, is an NCI-funded research network that includes 10 diverse healthcare delivery systems across the United States. The purpose of this network is to better understand how to improve the cancer screening process (recruitment, screening, diagnosis, referral for treatment) in community healthcare settings in the United States. PROSPR DataShare is a web-based system through which non-PROSPR researchers can request PROSPR data and explore ways to collaborate with PROSPR researchers.

The SEER-CAHPS data set is a resource for quality-of-care research based on a linkage between SEER cancer registry data and the Centers for Medicare & Medicaid Services’ (CMS) Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS®) patient surveys. These data provide a rich opportunity for analyses of Medicare beneficiaries’ experiences with their care at various stages of the cancer care continuum.

The SEER-Medicaid database results from the linkage of two large population-based data sources: the SEER cancer registries data and the Medicaid enrollment files for beneficiaries. This site contains information on how to request the data.

The SEER-Medicare database results from the linkage of two large population-based data sources: the Surveillance, Epidemiology, and End Results (SEER) cancer registries data and the Medicare enrollment and claims files for beneficiaries. This site contains information on how to request the data.

The SEER-Medicare Health Outcomes Survey (SEER-MHOS) linked database is designed to improve understanding of the health-related quality of life of cancer patients and survivors enrolled in Medicare Advantage health plans. The database contains clinical, quality-of-life, socioeconomic, demographic, and other information. SEER-MHOS is sponsored by NCI and the Centers for Medicare & Medicaid Services. The SEER-MHOS data files became publicly available to external investigators in December 2010. This site contains information on how to obtain the data.