Cancer registrars are data information specialists that capture a complete history, diagnosis, treatment and health status for every cancer patient in the U.S. The data provides essential information to researchers, healthcare providers and public health officials to better monitor and advance cancer treatments, conduct research and improve prevention and screening programs.
Registrars collect the data on a daily basis to submit to state cancer registries. States supported by the National Program of Cancer Registries (NPCR) share their data with this national program. The CDC’s Cancer Surveillance Branch is home to NPCR, which was established by the Cancer Registries Amendment Act, a law Congress enacted in 1992. As a result of this law, cancer is the only reportable chronic disease, allowing the CDC to disseminate accurate national incidence data.
The CDC uses data from NPCR to respond to various cancer inquiries from the public, government agencies, researchers and Congress. By understanding the burden of cancer, public health organizations, including the CDC, can create programs and interventions for prevention and early detection. CDC highlights the difference this data is making at the state level through the Success Stories program. These stories highlight how the data collected through the NPCR is used in research to improve public health.
Massachusetts Cancer Registry
Initiative: Disparities in Cervical Cancer Mortality among Black, Non-Hispanic Women in Massachusetts
Despite high rates of screening, in Massachusetts, black, non-Hispanic women are more likely to be diagnosed late for cervical cancer and have the highest mortality rates compared with women of other racial or ethnic groups.
The Massachusetts Cancer Registry (MCR) provided incidence rates for cervical cancer by race. For the years 2005-2009, the incidence rate for black, non-Hispanic women was 2.5 per 100,000-versus a rate for white, non-Hispanic women of 1.4 per 100,000. The Massachusetts Department of Public Health established the goal of reducing the proportion of black, non-Hispanic women with late stage (regional and distant) cervical cancer to 2 per 100,000 by 2016.
The MCR, the Behavioral Risk Factor Surveillance System, the Office of Clinical Prevention Services and the Comprehensive Cancer Control Program all collaborated to prepare presentations on incidence, mortality and screening to illustrate cervical cancer disparities in Massachusetts. The Massachusetts Department of Public Health also contracted with the JSI Research and Training Institute to conduct a series of focus groups with consumers, providers and community leaders to explore and identify factors contributing to a late stage cervical cancer diagnosis.
Summaries of each focus group were written and analyzed from three unique perspectives: consumer, community leader, and provider.
1) Follow-up of medical care after an abnormal Pap test results is a significant challenge.
2) Inadequate or no insurance coverage is a barrier to screening and follow-up.
3) Constant changing of both treatment and screening guidelines causes confusion among patients and providers.
The final recommendations included:
1) Development and implementing a cervical cancer education and awareness campaign.
2) Re-examining and assessing cervical cancer screening guidelines.
3) Improving patient-provider relationships.
As a result, a media campaign focused on breast and cervical cancer to emphasize the benefits and importance of early detection and follow- up of abnormal results with a doctor. Media included newspapers, buses/billboards and posters at local YMCAs; nail salons, gas pumps and social media. In addition, a campaign for providers offered online Continuing Medical Education credits through the Massachusetts Medical Society.
New Hampshire State Cancer Registry
Initiative: WISDOM: An Interactive Tool for Accessing Cancer Data in New Hampshire
More than 75% of all cancers are diagnosed in people aged 55 and older, and New Hampshire’s population has the fourth highest median age in the U.S. As the population ages, cancer is becoming a more visible public health problem. As a result, the New Hampshire Department of Health and Human Service is receiving increasing numbers of data requests and queries from researchers, hospitals, physicians, public health organizations and concerned citizens. The New Hampshire State Cancer Registry and NH Department of Health and Human Services (DHHS) encouraged cancer data use.
SEE ALSO: Cancer Registry Automation Update
How Cancer Registry Data Were Used: Many of the data requests received by NH DHHS require simple analyses. The New Hampshire State Cancer Registry decided to create a web-based mechanism through which stakeholders could easily obtain simple aggregate cancer registry data summaries.
The NH Web-based Interactive System for Direction and Outcome Measures (WISDOM) website was developed at the NH Division of Public Health Services (DPHS). This web-based portal provided information related to health risks, outcomes and DPHS performance metrics to staff, public health partners and the public. The DPHS Management Team approved 14 dashboards across six public health topic content areas: Cancer, Cardiovascular, Injury Prevention, Diabetes, Asthma and Tobacco.
The Public Health Topics Module of WISDOM contains interactive and customizable “dashboards” to provide easy access to health data in NH. The Data Reports Module of WISDOM can generate tables and figures from state cancer registry aggregated data for some cancers, including counts or rates stratified by age-group, sex, year, county and public health region, where those can be safely provided without jeopardizing patient confidentiality.
Oregon State Cancer Registry (OSCaR)
Initiative: Oregon State Cancer Registry Data Used to Support Passage of Law to Ban Underage Tanning Bed Usage
Oregon consistently ranks among states with the highest incidence and mortality rates for melanoma. In 2008, Oregon had the highest incidence rate in the nation (29.1 per 100,000 compared to 19.4 per 100,000, nationally).
Looking at more than 10 years of cancer registry data, melanoma rates among females under age 45 were higher than those among males of the same age. Studies indicated that indoor tanning was associated with risk of several types of skin cancer, including melanoma. It was also observed that tanning bed exposure before age 35 can significantly increase the risk of developing melanoma.
According to the 2011 Youth Risk Behavior Surveillance System (YRBSS) report, the prevalence of indoor tanning bed use among 12th grade girls was around 32%. According to the National Conference of State Legislatures, 33 states currently have some type of regulations for tanning bed use by minors, and California and Vermont recently banned underage tanning bed use. Unfortunately, Oregon children under age 18 could use tanning beds with just one-time parental consent.
Considering the higher risk of melanoma among Oregonians — especially among those under age 18 — a bill was proposed for the 2013 legislative session. The bill established a state statute for the development of administrative rules not allowing persons younger under 18 to be able to use tanning devices as defined in ORS 453.726. The ORS defined tanning facilities as any entity operating a tanning device.
The legislative concept was initiated by researchers at the OHSU Knight Cancer Institute. House Bill 2896 was introduced and sponsored by both Democrats and Republicans. The state cancer registry staff collaborated with the public health Radiation Protection Services to prepare bill analysis. The bill was supported by the Public Health Division at the Oregon Health Authority.
Oregon state cancer registry data was used throughout the legislative session to provide evidence against arguments posed by the tanning industry. The cancer registry and YRBSS data were referenced in testimony provided by OHSU Knight Cancer Institute, cancer survivors and the Oregon Medical Association. Despite testimony from multiple national and Oregon-based tanning facilities, there was support from the House and Senate for the bill to protect Oregon’s youth from a known cancer-causing practice. Eight proposed bill amendments, which would have allowed parental consent for use of tanning devices by youth age 17 and weakened parental consent procedures, were ultimately rejected. Oregon’s Governor John Kitzhaber signed the bill in its original form on May 16, 2013.
Linda Corrigan, MHE, RHIT, CTR, is a representative with the National Cancer Registrars Association (NCRA).