Telling the National Cancer Story: Nearly 50 Years of the SEER Program

The National Cancer Institute (NCI) is commemorating the 50th anniversary of the National Cancer Act of 1971. Its passage created programs like the Surveillance, Epidemiology, and End Results (SEER) Program, which provides robust statistical data to help reduce the burden of cancer among the U.S. population. In this guest post, NCI takes a look at the historical roots of the Act and the impact of data from the SEER program.

The National Cancer Act of 1971 opened the door to 50 years of progress in cancer research. Prior to its passage, some research on cancer prevention and control had been conducted and there were efforts to educate the public about scientific findings. Films like “The Reward of Courage,” produced by the American Society for the Control of Cancer in 1921, encouraged people to visit the doctor at the first sign of disease, pushing for early screening and clarifying that cancer is neither contagious nor hereditary.

Another film called “Drugs Against Cancer,” produced by National Education Television (NET) Science in 1968, dives into the search for anti-cancer properties in plants and animals, and was designed to build trust in cancer research. It provides a glimpse into where this research stood shortly before the passing of the National Cancer Act. Other attempts to keep the public informed involved pamphlets, posters, articles in newspapers and periodicals, radio lectures, and more.

Despite the increase in public health education leading up to the 1970s, cancer gradually became the second leading cause of death in the United States. Emerging from this public health concern and through the efforts of health activists like Mary Lasker, a medical philanthropist, political strategist, and health activist who pushed for more public funding for cancer research, President Nixon signed the National Cancer Act of 1971. This act represented a national commitment to making progress against cancer. A 1978 report notes how it also aided growth in genetics, immunology, cell biology, and virology—“all areas relevant not only for cancer but all of the life sciences and medicine”—in addition to ramping up public education and research in ways not seen in previous decades.

Additionally, the act created programs that addressed critical research needs, most notably the Surveillance, Epidemiology, and End Results (SEER) program. To conduct accurate research and develop stronger cancer prevention, treatment, and care benefitting all Americans, researchers needed a comprehensive and centralized database of cancer incidence across the United States. In 1973, SEER became that tool, filling the data gaps of two earlier NCI programs—the End Results Program and the Third National Cancer Survey—by expanding the number of states and cities surveyed. This created a national map of cancer that provided valuable population-based statistics on aspects like the number of cancer cases and mortality rates. In the nearly five decades since, the SEER program has collected, preserved, and provided access to reliable and detailed data like patient demographics, tumor morphology, and follow-up vital status.

Data from the SEER program has contributed much to cancer research over the years. Early applications of SEER data include its use in developing surgeon general reports in 1979 as well as 600 studies published from 1978–1999. That number has only continued to grow. To date, SEER has supported the primary analysis of over 17,000 publications and has served as a benchmark or reference point in over 188,000 publications. SEER data can alert scientists to new or changing trends in populations, such as a type of cancer affecting a certain ethnic group or a cancer with a high mortality rate affecting people who live in a certain geographic area, which can also aid in cancer health disparities research. Insights from these data can then be translated to patient settings to encourage practices like timely screening, early prevention behaviors, and appropriate education.

Today, SEER is helping researchers make sense of the story of cancer in this country through its collection of cancer registry data on thousands of cases each year. By analyzing cancer trends in SEER, scientists can see, for example, whether control strategies are working and if cancer survival rates are improving. This in turn informs efforts to improve cancer screening, diagnosis, and prevention programs across the United States.

One recent example of SEER data in action can be seen in the public health research of Rebecca Siegel, MPH. Looking at data from 1995–2016 in SEER and similar registries, she discovered that there was an increase in the number of people under 50 being diagnosed with colorectal cancer (CRC). With these findings, she was able to change screening guidelines for CRC, so that screenings are now recommended to begin at age 45 instead of 50, which, she stated, “will save countless lives over the long term.”

It should be noted, however, that while the collection of data is regularly being improved upon, SEER data is still somewhat limited in geographic scope, representing about 50% of the country, with some overrepresentation of urban areas and foreign-born individuals, since clinics in more rural areas often underreport data. SEER also only collects certain types of patient and mortality data. The program recognizes these challenges and is actively working on plans to collect more clinically relevant data such as treatment outcomes over time, cancer reoccurrence, and relevant biomarkers in order to build a clearer picture of cancer trends and outcomes. The program also plans to automate data collection and distribution at cancer registrars to reduce the time that data is made available.

Thanks to the National Cancer Act of 1971 and the resulting creation of SEER, researchers and medical professionals have decades of cancer statistical data at their disposal through a comprehensive, publicly accessible tool. Given the robustness of data it contains, NCI Director Dr. Ned Sharpless credits SEER as being “the most important set of cancer data and statistics in the world.” And by piecing together thousands of individual medical records into a clearer picture of cancer, SEER has and will continue to catalyze advances for millions who are impacted by this disease.

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