Sharing Cancer Registry Data

Oregon State Cancer Registry

Cancer data can be confusing and easily misinterpreted or misused, even when accurate and current. Researchers, health care providers, survivors, and advocates often seek national sources for cancer data instead of local data because they may not know about the Oregon State Cancer Registry (OSCaR) and other cancer-related data. The most troubling perception is that "the state has data but just won't share it." It is critical to identify and promote opportunities to share cancer registry data with individuals and organizations in a consistent format that is understandable, accurate, current, and adequately cited. While cancer reporting began in 1996 in Oregon, many health care providers, cancer survivors, and others are unaware of the central cancer registry and the wealth of information it can provide.

The partnership between the OSCaR and the Oregon Comprehensive Cancer Control Program (CCCP) provides a forum to introduce the cancer registry and its data to new individuals and organizations. OSCaR staff and activities provide linkages to key organizations and individuals, including accredited cancer centers, the Cancer Registrars Association, hospital cancer registrars and physicians, representatives of local government, tribal organizations, insurance groups, advocacy groups, researchers, and cancer survivors.

Examples of CCCP uses of cancer registry data include defining the burden of cancer at state and local levels; reviewing trends for cancer sites by age, race and ethnicity, stage of diagnosis, county, and mortality; identifying cancer disparities in treatment and survivorship; establishing state and local priorities for action; comparing quality improvement data to national standards; writing grant applications and progress reports; and identifying potential research questions.

Methods for disseminating cancer registry data include written materials (such as cancer fact sheets and reports) and educational events (such as community cancer forums, state and local meetings, conferences, and grand rounds). At community forums and hospital grand rounds, cancer registry data are included in state and community profiles that also include survey data from the Behavioral Risk Factor Surveillance System (BRFSS) and Oregon Healthy Teens, as well as vital statistics and U.S. Census data. These forums provide an opportunity to discuss cancer prevention as well as treatment and survivorship issues in a community.

The state cancer registry is a critical resource and partner in comprehensive cancer control activities. The three key outcomes of the OSCaR and CCCP collaboration are enhanced awareness and use of state, local, and national cancer registry data among diverse partners; consistent use and format for reporting cancer data; and a forum for addressing cancer burden, treatment, survivorship, and quality of care issues. While data can be intimidating, they are the necessary foundation for engaging in meaningful discussions and decision making related to defining the burden of cancer, identifying priorities for action, and evaluating progress. The experience of hearing groups engaged in data-driven problem solving discussions is a reward.