Data Sources-Cancer Betsy A. Kohler, MPH, CTR Director, Cancer Epidemiology Services New Jersey Department of Health and Senior Services

Cancer Epidemiology Services Cancer Registry Data collection on all cancer cases Supported by State, CDC (NPCR) and NCI (SEER) Award-winning,world- class registry Nearly 25 years of continuous data collection, over one million cases Cancer Surveillance Serves as data support and report generation for Registry Supported by State, Federal, Private Funds Cancer Epidemiology Research Projects (15) (HIPAA) Over 100 peer reviewed research studies Cancer cluster evaluation

Cancer Surveillance and Response to Community Cancer Concerns “Public Health Surveillance is the mechanism that public health agencies use to monitor the health of their communities. Its purpose is to provide a factual basis from which agencies can appropriately set priorities, plan programs, and take actions to promote and protect the public health” USDHS, Principles of Epidemiology, 1992

Use of Public Health Surveillance Data- Surveillance data can be used for public health action, program planning and evaluation, and formulating research hypotheses Measure burden of disease (incidence, mortality) Monitor trends (stage) Guide planning and evaluation of programs (screening) Detect changes in health practices (treatment) Prioritize health resource allocation Describe clinical course (survival) Provide basis for epidemiologic research

Timeliness of Surveillance Systems Immediate- BT, SARS, Controlling Outbreaks Annual-evaluating magnitude of problems, assessing effectiveness of control measures, setting research priorities, facilitating planning, monitoring risk factors Archival-monitoring natural history of disease, trends Stroup, et al

Evaluation-Cancer Surveillance as Public Health Surveillance System Strengths PH Importance Usefulness Flexibility Data Quality Acceptability Consistent Case Definition Stability Weaknesses Simplicity Flexibility Timeliness Source: MMWR 7/01 German,, et. al Source: MMWR 7/01 German,, et. al

New Jersey State Cancer Registry Continuous data collection since 10/1/78 Over one million cases on file Largest cancer resource for the State Reporting is required by law Reciprocal reporting agreements National awards for timeliness, accuracy and completeness of data

What type of data are collected? Demographics Age Race (White, Black, API, others) Ethnicity Gender Residence at Diagnosis Annual vital status is monitored

Medical Data Primary site (where did the cancer originate) Type of cancer (histology) Date of Diagnosis Stage at Diagnosis ( how far it has spread) Indicator variable for screening practice New cancer primaries (not metastatic sites)

Treatment Information First course of treatment for each primary cancer is recorded Surgery, radiation, hormone, other First few months, or planned course of therapy Does NOT include ALL therapy Would require extra work to evaluate for access to care issues

County Level Data Data not generally released on geographic level lower than county Specificity of address data not always sufficient Reliability Confidentiality Not always relevant

Cancer Registry Data Help identify the cancer burden How many cases? What types of cancer are most common in our county? What are the disparities in our county? Comparison to other counties, state(s), nation possible when using age-adjusted rates with common standard

Assess and Evaluate Cancer Programs What percentage of patients are diagnosed at early stages? (Surrogate for screening) Differences by race? Age? Use in conjunction with other data Behavioral Risk Factor Surveillance System Census data Others

Set Priorities, Plan Programs Evaluate Data driven decisions are essential to setting priorities! Tailor programs to the needs of your county Use data to support your conclusions Future data will be used to measure the effectiveness of programs instituted today.

Obtaining Data Meeting to develop set of standard data reports for each county Will provide information in standard way to facilitate interpretation. Will be distributed by Dr. Sass/Dr. Weiss They will address questions and assist in interpretation.

But I want it NOW! Go to Most recent county data for New Jersey for major cancer control sites Mortality data available here too Graphics, interpretation, comparisons IT’S GREAT

Web Resources Cancer Registry Statistics marks.cfm For all major cancer control sites— Treatment data

Other Web Resources NCI CDC ACS