Using Cancer Registry Data for Comprehensive Cancer Control Christie Eheman, PhD, National Program of Cancer Registries, Division of Cancer Prevention and Control Passport for the Future- A Cancer Free Tennessee April 24, 2009

Overview: Cancer Surveillance Cancer is a reportable disease Collect standardized data on all cancers diagnosed not a sample or a survey Cancer is the only chronic disease for which we have population based incidence data in each state

National Program of Cancer Registries

Scope of CDC Cancer Surveillance Cancer Surveillance System Data on approximately 1.2 million new invasive cancer cases are submitted to CDC each year Includes data on approximately 13 million invasive cancer cases diagnosed during 1995– % coverage of U.S. population with NPCR 100% NPCR and NCI-SEER combined

How is central cancer registry data used? Surveillance reports: national, state and local incidence data for cancer by age, race, gender, geographic regions National and regional data can be used to describe cancer patterns in special populations and investigate rare cancers Guide planning, implementation, and evaluation of cancer control programs at a national, state, and local level Identify and document disparities Advance clinical, epidemiologic, and health services research

Annual Report to the Nation Update of death and incidence cancer rates 2008 report First time report documented decline in cancer incidence Special focus on tobacco-related cancers State and regional differences in lung cancer trends Collaboration between CDC, NCI, North American Association of Central Cancer Registries (NAACCR), ACS

MMWR Surveillance Summary Collaboration with OSH First time that CDC has reported on tobacco-related cancers on more than 90% of the population Findings emphasize need for ongoing surveillance Identify populations at greatest risk Evaluate effectiveness of targeted tobacco control programs and policies

State Cancer Profiles Comprehensive Cancer Control Plans Dynamic views of cancer statistics for prioritizing cancer control efforts Nation State County Collaboration between NCI and CDC

United States Cancer Statistics National cancer statistics Collaboration, CDC, NCI, NAACCR State, regional, and national data Rates for whites, blacks, Asians/Pacific Islanders (A/PI), American Indians/Alaska Natives (AI/AN), Hispanics, and children

State and County data State cancer incidence reports Respond to state-level inquiries and requests Comprehensive Cancer Control Planning Identifying state and local disparities Evaluate success of public health programs

State of Tennessee Comprehensive Cancer Control Plan 2009 – 2012 How is Comprehensive Cancer Control Accomplished? Determine the cancer burden; Identify the needs of communities and/or population-based groups Develop interventions and infrastructure to address the needs; and Evaluate the impact of these interventions on the health of the community/population Data on cancer incidence provides valuable data each step of the way

What type of factors can be evaluated? Incidence rates Comparison to other states and National rates Rural versus urban differences Differences between counties – percent of population below poverty level Risk factors – tobacco use; screening Stage at diagnosis Screening effectiveness Disparities in diagnosis Treatment

USCS: State vs. National Comparisons Incidence Rates for Males, All Races Combined, Comparison of incidence rates in Tennessee with U.S. incidence rates Top 10 cancers Rates are age- adjusted Similar comparisons could be made between county and state rates

USCS: State vs. National Comparisons Incidence Rates for Females, All Races Combined, Comparison of incidence rates in Tennessee with U.S. incidence rates Top 10 cancers Rates are age- adjusted Similar comparisons could be made between county and state rates

USCS: State Rankings Incidence Rates for Female Breast Cancer, Ranking of incidence rates (including U.S.) from highest to lowest Available for 27 cancer sites by sex All races combined Rates are age- adjusted Similar comparisons could be made for TN counties

State Cancer Facts Condensed version of USCS State and national data only State versus national comparisons for top 10 cancer rates By sex By race and ethnicity

State Cancer Facts Incidence Rates for Prostate Cancer by Race and Ethnicity, 2005 Comparison of incidence rates by race and ethnicity in Tennessee Suppress data if rates not stable Rates are age- adjusted Similar comparisons could be made at the county level

State Cancer Facts Incidence Rates for Female Breast Cancer by Race and Ethnicity, 2005 Comparison of incidence rates by race and ethnicity in Tennessee Suppress data if rates not stable Rates are age- adjusted Similar comparisons could be made at the county level

Overall Cancer Incidence Rates by County, Tennessee, Source: Tennessee Comprehensive Cancer Control Program. Burden of Cancer in Tennessee. Available at:

Overall Cancer Mortality Rates by County, Tennessee, Source: Tennessee Comprehensive Cancer Control Program. Burden of Cancer in Tennessee. Available at:

Example: State of Tennessee Comprehensive Cancer Control Plan 2009 – 2012 Goal: Reduce colorectal cancer mortality through screening and early detection How do you monitor progress? Mortality Incidence – stage at diagnosis

Colorectal cancer: Tennessee, Burden of Cancer in Tennessee

Evaluating Effectiveness of Screening: Female Breast Cancer Cases Diagnosed at Early Stage before Mammography Widely Accepted Michigan, 1985–1987 Percentage of Cases < – – & over

Percentage of Cases < – – & over Female Breast Cancer Cases Diagnosed at Early Stage - Mammography Widely Accepted Michigan, 2000–2002

Enhancement of registry data Examples of possible linkages National Death Index Survival Disparities Differences in stage at diagnosis Treatment differences Insurance claims Treatment data Other Programs and Agencies Indian Health Service administrative data

Voti L, Richardson LC, Reis I, Fleming LE, MacKinnon J, Coebergh JWW. The effect of race/ethnicity and insurance in the administration of standard therapy for local breast cancer in Florida. Breast Cancer Res Treatment 2006; 95: Florida Registry data were linked to Healthcare Administration inpatient and outpatient data – Elderly, Hispanic and Black women, uninsured, and women on Medicaid were less likely to receive standard treatment Proposed next steps - Enhance and expand breast cancer preventive and treatment services for patients and providers Examples: Identification of disparities

Summary Cancer registry data is a valuable resource Quantify cancer burden Particular populations Geographic areas Monitor changes in incidence or stage at diagnosis Success of interventions Changes in environmental or behavioral factors

Christie Eheman The findings and conclusions in this presentation have not been formally disseminated by Centers for Disease Control and Prevention/the Agency for Toxic Substances and Disease Registry and should not be construed to represent any agency determination or policy.