Policy Fellow Mary Charlton: Modernizing Iowa Cancer Reporting Requirements

Photo of Mary Charlton, professor in the Department of Epidemiology at the University of Iowa College of Public Health.Mary Charlton is an assistant professor in the Department of Epidemiology at the College of Public Health as well as an investigator with the Iowa Cancer Registry. As one of our policy fellows at the Iowa Institute of Public Health Research and Policy, Charlton is recommending policy changes to modernize Iowa cancer reporting laws.

The Iowa Cancer Registry (ICR) is a population-based cancer registry that has served the State of Iowa since 1973. The registry is funded by the National Cancer Institute (NCI) as part of its Surveillance, Epidemiology, and End Result’s (SEER) Program. The SEER Program registries routinely collect data on patient demographics, primary tumor site, tumor morphology, stage at diagnosis, and first course of treatment. SEER is the authoritative source of information on cancer incidence and survival in the U.S.

Learn more about it

See our one-page handout "Policy Changes Needed to Modernize Iowa Cancer Reporting Requirements."

Cancer is a reportable disease in Iowa. About 25,000 cancer abstracts per year are collected from hospitals, pathology laboratories, cancer treatment centers, and physician practices. Two-thirds of the abstracts are collected by the 14 Iowa hospitals with cancer centers that are accredited by the American College of Surgeons Commission on Cancer.  

Tumor registrars who are employed and trained by the Iowa Cancer Registry currently abstract cancer information from the other 104 hospitals and non-hospital sites of diagnosis.

According to SEER:

“The ICR provides accurate and thorough reporting of cancer disease. The ICR has been consistently recognized for its extremely high quality data. However, Iowa has some of the weakest reporting laws compared to other states.  Iowa also has one of the lowest rates of e-path reporting of all SEER Registries.”

To ensure continued funding from NCI, it is necessary to address the low rate of e-path reporting and Iowa’s weak cancer reporting requirements, which require a disproportionate amount of NCI funds to be spent on cancer case abstraction compared to other SEER Registries. Existing Iowa cancer reporting requirements were developed long before widespread use of electronic record systems and at a time when nearly every cancer patient received treatment in a hospital. Cancer reporting requirements must catch up with technology.