Transcript Data Sources-Cancer - Rutgers University

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
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Data collection on all
cancer cases
Supported by State, CDC
(NPCR) and NCI (SEER)
Award-winning,worldclass registry
Nearly 25 years of
continuous data
collection, over one
million cases
Cancer Surveillance
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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”
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USDHS, Principles of Epidemiology, 1992
Use of Public Health
Surveillance DataSurveillance data can be used for public
health action, program planning and
evaluation, and formulating research
hypotheses
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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
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Stroup, et al
Evaluation-Cancer Surveillance
as Public Health Surveillance
System
Strengths
Weaknesses
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PH Importance
Usefulness
Flexibility
Data Quality
Acceptability
Consistent Case
Definition
Stability
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Simplicity
Flexibility
Timeliness
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
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Medical Data
Primary site (where did the cancer originate)
Type of cancer (histology)
Date of Diagnosis
Stage at Diagnosis ( how far it has spread)
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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
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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
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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
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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
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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 http://cancercontrolplanet.gov
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
www.naaccr.org
Cancer Registry Statistics
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www.state.nj.us/health/cancer/statistics
http://web.facs.org/ncdbbmr/ncdbbench
marks.cfm
For all major cancer control sites—
Treatment data
Other Web Resources
NCI
www.cancer.gov/cancer_information
http://seer.cancer.gov
CDC
www.cdc.gov/cancer
ACS
www.cancer.org