SEER 50th Anniversary

September 18, 2023 Subscribe

2023 marks the 50th anniversary of the Surveillance, Epidemiology, and End Results (SEER) Program. SEER began collecting data on January 1, 1973 in the states of Connecticut, Iowa, New Mexico, Utah, and Hawaii, as well as the Detroit and San Francisco-Oakland metropolitan areas. The population coverage of SEER has grown over time and the Program now comprises 22 registries (now known as "SEER 22"). SEER 22 expanded coverage to include almost 50% of the U.S. population. Since the turn of the 21st century, SEER's demographic coverage and data collection capabilities grew more sophisticated with advances in research and technology. SEER focused its growth priorities on five key areas: 1. data collection and methods development to expand the scope of surveillance research, 2. improve representation in cancer burden estimates, 3. train individuals in cancer surveillance, 4. produce an annual report to the nation on the status of cancer, and 5. support molecular and genetics surveillance research.

I. Data Collection and Methods Development to Expand the Scope of Surveillance Research

Until relatively recently, cancer registrars had to manually enter cancer data into a patient record. Nowadays patients have electronic health records that require registrars to consolidate information from multiple sources and review it for accuracy. SEER is also moving toward more automation where possible—such as structured data extraction from pathology and radiology reports—to reduce manual effort while simultaneously improving consistency and reducing the delay in cancer reporting. These new methods further enhanced the strict quality standards that already existed for SEER.

The SEER Program now works with many health care provider data sources, such as pharmacies and genomic testing laboratories, to enable centralized linkages to cancer registries. Linkages efficiently enhance completeness of the data with clinical information like drug type, dosage, and genetic mutations often not accessible through traditional reporting mechanisms. Some of these linkages include SEER-Medicare, which can give researchers more information about elderly cancer patients, SEER-Medicaid, which may provide more insight into economic cancer inequalities, and more.

II. Improve Representation in Cancer Burden Estimates

The data from cancer registries can reveal information about the number of cancer cases in the United States and how cancer affects people of different groups. To see the complete picture of how cancer affects people differently, the cancer registries and researchers need to have accurate representation in their data. SEER 8, the set of cancer registries that began collecting data in 1973, covered about 8% of the U.S. population. SEER 8 represented about 8 to 9% of Whites, Blacks, and Hispanics, 12% of American Indians and Alaska Natives, 17% of Asians, and 42% of Native Hawaiian and Pacific Islanders in the US. Current SEER coverage (SEER 22), which includes about 48% of the U.S. population, improved racial and ethnic representation in cancer data. SEER representation increased to 42.0% for Whites, 44.7% for Blacks, 59.9% for American Indians and Alaska Natives, 70.7% for Asians, 70.3% for Native Hawaiian and Pacific Islanders, and 66.3% for Hispanics. And, based on 2020 census data, SEER also covers over 50% of people who self-reported another race and 38% of people who reported two or more races.

III. Train Individuals in Cancer Surveillance

Throughout its history, the SEER Program adapted to the changing needs of the cancer research community and facilitated cancer surveillance. Along with supporting cancer registrars in data collection, SEER also supports researchers in analyzing the data. The utility of the SEER data continues to grow, but some of its main uses by researchers include: identifying emerging cancer trends; investigating health disparities by race/ethnicity, sex, geography, and other variables; understanding patterns and quality of care; analyzing the impact of public health interventions, early detection and treatment advances; and guiding the translation of research into health policy and practice. SEER*Stat is the main portal for researchers to access databases and analysis tools. There are two databases: SEER Research and SEER Research Plus, which requires a stricter process for accessing more detailed data. Between April 2021 and April 2022, there were 13,733 requests for access to SEER Research and 4,195 requests for SEER Research Plus. Making the data available has always been a main priority; even decades ago, anyone could request the public use file on a complimentary CD-ROM. Presently, SRP provides free technical assistance for SEER*Stat. Due to its long-term prominence in the field, SEER is well-known among researchers; as of 2022 more than 21,000 publications included SEER data for the primary analysis, and more than 105,000 referenced SEER data.

IV. Produce an Annual Report to the Nation on the Status of Cancer

Fulfilling one of its core goals to periodically report on the cancer burden, SEER contributes to several reports on cancer. The Annual Report to the Nation on the Status of Cancer (ARN) is a collaboration between NCI, the American Cancer Society, CDC, and NAACCR. This report provides an update of incidence and mortality rates and features an emerging cancer surveillance topic. Following the Cancer Surveillance Research Implementation Plan of 1999, which identified priority areas to enhance SRP, the Program began producing and disseminating a national report card on the cancer burden. The first report, which would evolve into the ARN, was published in October 2000 and presented a "report card" on cancer in the U.S. The archive of ARN publications is available on the Archive of the Annual Reports to the Nation page. SEER continued publishing more reports on cancer, like the Cancer Trends Progress Report, in 2001; that report summarizes our nation's advances against cancer based on Healthy People targets from the Department of Health and Human Services. These reports, intended for policymakers, researchers, and public health professionals, include key measures of progress along the cancer control continuum and use national trend data to illustrate improvements and areas of concern.

V. Support Molecular and Genetic Research

As genetic testing becomes more available, SEER data continue to support advances in cancer research and treatment. In a 2017 publication in The American Journal of Surgical Pathology, NCI researchers presented a PubMed literature review of recent SEER publications that incorporated biospecimens, biomarkers, and other clinical and pathological data into the study. From 2012 to 2017, the researchers found 191 papers with "SEER" and "Biomarkers" terms in PubMed, with 41 papers published within the previous year. Now, from 2019 to 2023, 199 papers have been published related to these topics. From 2019 to 2021, there were an average of 60 papers published each year, which is a 50% increase from the roughly 40 publications per year noted in the 2017 study. The disruptions of the COVID-19 pandemic likely slowed down the rate of publications in 2022. Regardless, the studies captured with these PubMed search terms involve studies such as how genetic patterns can help doctors predict, stage, and treat certain types of common cancers.

The advancements in these five areas of cancer surveillance will enable future innovations and improvements in cancer data and research that will lead to better and longer patient quality of life. While it is important to look towards the future of cancer research, it is also important to recall that the data come from the experiences of millions of Americans diagnosed with cancer. As a record of these life-changing diagnoses, it is SEER's solemn duty to tell the story of cancer in the United States and support research that will reduce the cancer burden.